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FAQ Frequently Asked Questions
We are suspending the 'Ask a Doc' section for the time being. We hope to have it back up and running again in the near future. We want to take this time to thank the doctor's at Anne Arundel Gastroenterology Associates for volunteering their time and expertise with us. The past questions and answers are still posted so if you have a question, you made find the answer among these posts.
Question Hello - I am the Mother of two celiac children ages 3 and 6. My question is concerning oats. Is there a consensus yet on whether they can be included in their diet? Dr. Fasano mentioned at a recent lecture that"... if using oats would change your life, then go ahead and use them." Of course it would make a huge difference if oats could be incorporated into their diet, however, it is not my body and I feel too responsible to make that decision until the medical profession can conclusively say they are safe. If and when do you see that happening? Thanks for your time. Sincerely, Nancy Annapolis, MD Answer Wheat, barley, and rye are definite gluten sources. Oats are often contaminated by wheat, barley, and rye and therefore should be minimized if gluten avoidance is necessary, especially if the children have been documented to have celiac disease. Whole Foods supermarket offers a number of flavorful choices for children on a gluten free diet. If there is doubt as to the diagnosis however, in lieu of endoscopic biopsies, a Prometheus gluten serum panel can be drawn for confirmation. If negative, the diet can be liberalized. CHARLIE CATTANO, MD, FACP, FACG, AGAF ANNE ARUNDEL GASTROENTEROLOGY ASSOCIATES Question My Celiac daughter had her blood work done, to check to see how she is doing(to see if she has been getting any gluten, she still has allot of stomach aches) Not sure how to read the results! cel Free T3(gluten ev) 3.7 -- 2.3-4.2 pg/mL antigliadin IGG 2 -- 0-9 U/ml negative -- 0-9 U/mL positive -- >9 U/mL antigliadin,IgA <1 -- 0-4 U/ml negative -- 0-4 U/mL positive -- >4 U/mL t-transglut.Iga <1 -- 0-4 U/ml negative -- <20 weak positive -- 20-30 mod to high pos -->30 t-transglut igg <1 -- 0-3 U/ml negative -- <20 weak positive -- 20-30 mod to high pos -- >30 Endomysial iga iga, quant negative 186 -- Negative 61-348 mg/dl Thanks for you help Mary Answer Dear Mary, The antibody tests appear reassuring that there's no current response to gluten. The T3 is a thyroid test which also appears normal. Celiac disease does not protect one from other GI conditions such as Irritable Bowel or Inflammatory Bowel Disease. These other possibilities should be investigated with the patient's gastroenterologist in view of the symptoms. Anthony J. Calabrese, MD FACG Anne Arundel Gastroenterology Associates Question I was diagnosed with gluten antibodies about two years ago.I have the typical abdominal symptoms of classic celiac disease, but I don't have celiac disease. I have had terrible neuropathy in my legs, and we explored every test in the world to find etiology. The only thing we found was very high anti-gliadin antibodies, and elevated lipase enzymes. No one paid too much attention to the lipase elevations until now. Here is my situation and my questions. I would appreciate any feedback any one might be able to share. I am not celiac, but gluten intolerant. I also have severe dairy intolerance. My diet is very narrow. When I went on the gf diet, and also eliminated all dairy and oils from my diet, I did feel much better, although the neuropathy was still there. The intensity goes up and down with what I eat. If I eat only rice and bananas for several days it almost goes away entirely. After I went to one of the major centers for Celiac Disease, and was told that I don't have the genes for Celiac Disease (I was told I have an intolerance and that I could cut out gluten if it made me feel better, but that I didn't have to) I came home and splugered on gluten and dairy, just for a couple of days. I got really sick. It has been 7 weeks of feeling really sick. I have been gf and dairy free for about 4 weeks, but seem to be more sensitive to everything else now that I went off my diet for only one week. I have gotten really discouraged and now I can't seem to get myself back on the strict diet I was on, despite the return of all my symptoms. #1.Has anyone had this experience? I am wondering how long it takes to recover from a splurge or indulgence? #2. Also, before I splurged, my anti-bodies had come down to just slightly above normal. My lipase was also normal for the first time in three years. I am wondering about correlations. Does any one know if these two things go up and down together? #3. Last, I am having a CT scan done. Since iodine allergy is in my family, and since I sometimes get hives from shell fish, I am doing the desentization (prednisone and benadryl) before the scan is done. I am fearful of doing the scan without the preparation, but I am just as fearful of the effects of the prednisone (even though it is only three doses.) Does any one have experience with this routine? Has anyone here ever gotten sick from the limited dosing of the prednisone? I would be interested in hearing what others experience with this procedure might have been. I do feel I should have the CT scan done, since it might help to identify if there is something else going on besides gluten and dairy intolerance. #4. I am hearing a lot about "leaky gut' syndrome. Does anyone relate to this? I know these are a lot of questions, but I am really feeling pretty nasty and lost for what direction to go. First would be to get back on my strict diet, but I really think I should be able to eat more than these few foods. So, if anyone has shared my experiences, or has experienced any of the above, I would appreciate to hear from you. Regards, Denise Chicago area Answer Dear Denise, The answers to your questions cannot be definitive because there are so many possible reasons for your problems. But several thoughts come to mind. First, you state that you do not have celiac disease. The diagnosis of this condition depends primarily upon the presence of certain antibodies and typical small bowel biopsy findings. Genetic attributes have also been used to support the diagnosis and to better understand inheritance patterns, but not every population study has shown the same genetic attributes. Therefore, negative genetics may not be a definitive vote against the diagnosis. Your devastating experience with the gluten "splurge" reinforces the diagnosis of celiac disease, as does the subsequent increased antibody levels. Lipase is contained in small intestinal mucosa and the parallel changes with your symptoms strongly suggest that the elevated levels are due to intestinal inflammation. Recovery from the gluten exposure certainly will take weeks and full restitution of the small bowel appearance may never occur. But sufficient functional recovery is very likely with a gluten-free diet, and I strongly suggest that you pursue that sort of diet. Your neuralgic deficits have been described in other persons with celiac disease and may be due to vitamin deficiencies or to immune mechanisms. Like many neurological conditions, unfortunately, recovery may never be fully achieved or may take years to occur. Finally, as for CT scan, it has limited applicability here, but reassured that the prednisone will not harm you. The leaky gut syndrome you allude to is pertinent primarily to the potential absorption of bacterial products which can cause inflammation and does not pertain to celiac disease. Thank you your questions. Michael N. Peters, M.D., FACG Anne Arundel Gastroenterology Associates Question What blood tests should be done, periodically, to show that we are maintaining our gluten-free diet properly and how often? When should you take the first of these tests (i.e. One year after being GF?) Pat Gambrills, MD Answer Dear Pat, The Prometheus Celiac panel is sensitive to diet indiscretion, and we can arrange it thru office if there is some question about diagnosis or diet compliance. Typically however, once celiac changes have been endoscopically documented to have healed (usually 6 months after initial diagnosis) with gluten restriction and the patient is remaining symptom free, there is no consensus to "resurveillance" these patients by bloodtesting. Charlie Cattano, MD, FACP,FACG Question Hello, My son is 11 years old and was diagnosed with celiac disease in October of 2004. He has been on a gluten free diet and has improved. In the last few months my son has been saying he's always tired and has experienced what his pediatrician and I believe are hypoglycemic episodes. (His pediatrician, concerned he may have diabetes, tested his urine for sugar -it was negative). Is there a connection between celiac disease and hypoglycemia? When I look at online message boards, I do see some messages regarding hypoglycemia. Could the hypoglycemia be related to the gf diet? Is there something else I should have him tested for? (Although, I am loathe to put him through anymore testing.) Thank you for your time, Beverly Maryland Answer Dear Beverly, There is an increased association of juvenile diabetes and Celiac disease. Hypoglycemia is the condition where the blood sugar is lower than normal. Testing the urine for sugar would not detect low blood sugar. Sugar in the urine may be present if the blood sugar gets high enough to spill over into the urine. Sometimes a low blood sugar can result from early diabetic conditions when insulin secretion does not coordinate well with the body's need and a "rebound" hypoglycemia can occur. The Gluten free diet is not a reason for low blood sugar assuming as you state that your son has improved and is getting adequate nutrition from gluten free sources. I'd first question whether or not hypogylemia is really occurring. Blood testing is necessary to diagnose this. A formal Glucose tolerance test would be the most accurate way to assess your son for the possibilities of both diabetes and hypoglycemia. General lab testing and thyroid tests may also been indicated. Anthony J. Calabrese, MD, FACG Anne Arundel Gastroenterology Associates Question Once diagnosed with celiac disease and adhering to a gluten-free diet, how long until GI symptoms improve in an adult (40s)? Thank you, Karen L. Answer Dear Karen, Most persons with celiac disease will respond to gluten withdrawal within three weeks and, if no improvement is seen within a month, should be re-evaluated, especially for hidden gluten in the diet. Such hidden gluten may be in a pill, in a dietary supplement, or some other source. Michael N. Peters, M.D.,FACG Anne Arundel Gastroenterology Associates Question Hi. Last November I started having sypmtoms of fatigue, body aches, stomache pains, and frequent diarhea. After losing about 40lbs in 3 months (which was a 1/6 of my total body weight before weight loss) I decided to see a GI doctor. Since I had chronic pain in my lower right side, I first had an upper GI and a small intestines series, followed by a colonoscopy a week later. At first, it was thought that I could have Crohn's disease. Initially I had a stool sample and blood work which apparently didn't indicate anything specific. After my colonoscopy, my doctor told me that I had acute colitis and that I should contine on my regiment of Carafate tabs TID and Robinul Forte BID. Temporarily, my condition seemed to improve with these meds and also by avoiding certain foods in my diet such as very acidic foods- spaghetti sauce and OJ, and also dairy products because I seem to be lactose intolerant as well. Just recently, I feel like I am starting all over with sypmtoms and resorting to my old methods of Immodium so that I can function at work. My younger sister (early 20's) was just diagnosed with gluten intolerance (by same GI doctor). I just followed up with my doctor who went back to research results from my celiac sprue (sp?) panel blood work to find out it had never been done by the lab (even though she had ordered it way back when). So, I went for the blood work and am currently awaiting results. In the meantime, I am to discontinue Carafate and am taking the standard dose of WelChol to help "dry" up some of the intestinal fluids. Almost a year later, I am starting to get discouraged. My body seems to be heading back to the point in which I started at. Can you recommend any tests or information so that I can possibly reach a diagnosis? Especially with my sister's diagnosis of gluten intolerance (btw- she has only had blood work done), is it possible that I have the same problem? In your opinion, am I currently on the right course, or perhaps are there other methods or meds I should be trying? Thank you for taking the time to answer my questions. I appreciate it. -Donna Baltimore, MD Answer Dear Donna, I would recommend having transglutaminase Ab checked to assess personal risk of celiac disease. Thank you, Charlie Cattano, MD, FACP, FACG, AGAF Anne Arundel Gastroenterology Associates Question HI, THANK YOU FOR THIS WONDERFUL SITE! MY 13 YEAR OLD DAUGHTER WAS RECENTLY DIAGNOSED WITH CELIAC. A FEW YEARS AGO I COMPLAINED TO ANYONE WHO WOULD LISTEN THAT HER GROWTH HAD FALLEN FROM THE 75TH% TO THE 25TH. EVERYONE GAVE ME REASSURANCES (INCLUDING THE PED ENDO) THAT THIS WAS SIMPLY CONSTITUTIONAL DELAY. THEN A FEW MONTHS AGO SHE RANDOMLY STARTED TO COMPLAIN OF STOMACH ACHES AND CONSTIPATION. I WAS TOLD SHE HAD STRESS, BAD DIET ETC. FINALLY, A NEW DR., TOOK THE CELIAC TEST AT QUEST AND HER TISSUE RESULT WAS SLIGHTLY ELEVATED. THE NEXT BLOOD WORK WAS DONE AT PROMETHEUS AND THAT TISSUE TEST WAS ALSO POSITIVE (17). BIOPSY THEN CONFIRMED CELIAC. NOW, THE CHILD HAS BEEN GLUTEN FREE FOR ABOUT 2 MONTHS. A QUEST BLOOD TEST LAST WEEK SHOWED HER TISSUE TEST AT 13. HOWEVER, SHE IS MISERABLE. THE CONSTIPATION IS SO RELENTLESS. WE HAVE TRIED EVERYTHING. SHE NOW RELIES ON A MILK AND MOLASSES ENEMA NIGHTLY TO GIVE HER SOME RELIEF. SHE HAS NO ENERGY AND IS LOSING HER GREAT SPIRIT. SHE HAS BEEN TOLD TO EAT THIS AND THAT AND IF SHE COMPLIES WITH BEING GLUTEN FREE, SHE WILL FEEL BETTER. THE REALITY IS SHE FEELS WORSE! I AM LOSING MY MIND. ALL OTHER BLOOD WORK IS NORMAL, ABDOMINAL AND PELVIC CAT SCAN NORMAL, STOMACH X RAYS NORMAL (BOTH SHOWED CONSTIPATION). WHAT DO I DO NOW? THANK YOU SO VERY MUCH. D.S. Answer If the "tissue test" referred to is the tissue transglutaminaseantibody, the result of 13 is still high and suggests gluten exposure. Has a thorough dietary review with a trained dietician been done? Blood tests should include thyroid testing and adrenal function testing(cortisol) and may not have been included in the blood testing done to date. A detailed review of her situation by another GI expert may be in order if these do not give any additional insight into her difficulties. Anthony Calabrese,M.D.,F.A.C.G. Anne Arundel Gastroenterology Associates Question Hi - My name is Caroline and my Daughter was just Diagnoised with Type 1 Diabetes. Her Initial blood work cam back with the following: Anti Thyroid Antibodies Anti- Microsomal Results 1:40 Anti-Thyroglobul results 1:16 Tissue Transglut, AB Results 253.0 GAD-65 AB Results 9.5 H Glycohemoglobin results 10.5H Immunoglobulin A Results 117 I am being told that she may have Celiac Disease but she has no Symtoms. I will be making an appointment with the Peds GI but am unsure if she definitely has Celiac Disease. Does She? Caroline Nee Jersey Answer Dear Caroline, The results are suggestive of Celiac Disease, but not diagnostic. She should see a Gastroenterologist, and a Small Bowel Biopsy is probably needed. Thank you, Douglas D. Dykman, MD, FACG Anne Arundel Gastroenterology Assoc. Question Good Afternoon, I am confused about gluten sensitivity and Celiac Disease. We finally decided to have our 20 month old son's stool tested with Enterolabs for gluten sensitivity because his celiac lab test came back negative, but we were still suspicious of a gluten sensitivity. I just received the results and he has a score of 52, and the normal range is <10. I understand this to mean that he should go on a gluten free diet, but would this mean that he does have celiac, or could he outgrow the gluten sensitivity as he gets older? I have posted his results below. Gluten Sensitivity Stool Test Fecal Antigliadin IgA 52 (Normal Range <10) One of the reasons we finally went ahead and did the gluten sensitivity testing with Enterolabs is because the many doctors we have seen, including two GI doctors, could not come up with any conclusive answers for us. Our son is labeled Failure to Thrive because he is way below the charts for weight. He is only 20.12 pounds and 31 inches at 20 months old. He has also had low iron, reflux, previously had diarrhea, constipation, elevated liver function, low CO2 levels and a few more I can't remember off the top of my head. One said she suspects Celiac, but the lab panel came back negative. The other one said it is unlikely that it is Celiac. Our son did have an endoscopy done, which showed " "mild focal blunting of the villi, but generally well preserved." I was told by one GI that it MIGHT indicate Celiac and to put him on a gluten free diet and then told by another that it wasn't Celiac and a gluten free diet is not necessary. So, you see my dilemma. I did not want to put my son on a gluten free diet without being sure, but now we are going to go ahead and see how he responds to it. We did not have the genetic testing done because it was too expensive and we could barely afford to pay for the gluten sensitivity testing. Hopefully, our son will respond well to the gluten free diet. I know that testing a child under 2 is sometimes difficult, but isn't there a way to find out if he has Celiac Disease? Also, should I really trust the results to the stool testing? We need some answers for our little boy. Thank you, Karen Answer Dear Karen, A diagnosis based only on stool IgA testing is suspect. She does not tell us what "lab tests" were done. The best would be Prometheus Celiac panel, but it will run about $400 dollars (or more). She loses nothing by restricting gluten now and assessing response over a month or two. As the child ages retesting is recommended, after a rechallenge of wheat (two slices of whole wheat bread x 2 weeks). Charlie Cattano, MD, FACG Anne Arundel Gastroenterology Associates Question My 6-year old daughter just had a celiac test panel done and here are the results: TTG AB (IGA) 14 (ref. range 0-19 units) Antigliadin AB (IGA) 1 (ref. range 1-19 units) Antigliadin AB (IGG) 59 (ref. range 1-19 units) I have been reading about people with a Total (or partial) IGA deficiency. Because her IGA antibodies were within normal limits but her IGG antibody was high, should I suspect possible celiac disease with an IGA deficiency? Why else would the IGA's be within normal limits but the IGG be positive? (Just a note, I have hashimoto's thyroiditis and have had GI problems but have been fully tested for celiac disease but am 'negative' but I still follow a gluten-free diet. Because my tests showed negative but have an autoimmune disease, I am wondering if I could be IGA deficient too). Brenda Answer Dear Brenda, The TTG AB is most accurate and the others are much less reliable for Celiac diagnosis. Labs vary, however, in their accuracy. A partial Ig A deficiency is possible to explain these readings in a patient with celiac. I'd check a quantitative IG A level to see if that's present. If clinically indicated, "fully testing" for celiac disease would require a small bowel biopsy to resolve whether or not celiac disease is present. Referring her for Prometheus Celiac panel will address genetic predisposition too, versus gluten "sensitivity" alone. Anthony Calabrese, MD, FACG Anne Arundel Gastroenterology Associates Question I just had blood work done ordered by Stillpoint Center in Temecula. I was wanting to check my hormones and other things. I am 63 years old. The results showed IgA 17.65 (normal is 0.01-20.00 and IgG was 23.44 in the same range. Transglutaminase, IgA was 8.19 with range of 0.00-20.00 and Immunolglobulin IgA is 128 in a 70-300 range. This indicates that 20-30 is considered a weak positive reaction to gluten. The doctor suggested I pursue a gluten free diet for the rest of my life. I have no symptoms of celiac at all-at least no apparent symptoms with digestion, bowels, etc. I have psorasis which demonstates as some flaking on my forehead and around hairline and dryness and flaking skin in the outside corners of my nose. It is not chronic and I use some lotion prescribed by my dermatologist when necessary. In my early 20's I suffered multiple canker sores in my mouth but have not had canker sores for 40 years or more now. They either considered a series of small pox shots or I may have had them but I do not recall. Do you think the reaction warrants going on a gluten free diet on a permanent basis? Maureen Jones Answer Ms. Jones, The data supplied indicates no clear evidence that this you have Celiac disease. The normal IgA transglutaminase in the setting of normal Ig A levels is the more reliable of the tests. In the complete absence of symptoms or laboratory studies suggestive of malabsorption, I personally would not prescribe a Gluten free diet for you. Anthony J. Calabrese, MD , FACG Anne Arundel Gastroenterology Associates Question In researching skin care products, I've discovered that many have Triticum Vulgare (wheat) germ oil or a barley derivative or other constituents which I know if taken internally have the potential of causing damage to my intestine. I have been scouring the internet to find medical community commentary about whether or not we can safely put what appears to be gluten containing products on our skin. Has the celiac disease medical community taken a definitive position about gluten in skin care products? Thank you, Linda Salt Lake City Answer Linda, Dermatitis herpetiformis is a skin manifestation of celiac disease, therefore I would suggest you avoid topical exposure to gluten (although I can't say with certainty it should really matter to your enteropathy). Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Assoc. Question Hi Doc, I am 30yrs old and just had a celiac panel done because my mother has the disease and I have always had bowel problems, low weight and just found out I have osteopenia. My results are in but my doctor is on vacation. Could you explain these results for me? results IgA 6 range(0-4) tTG -1 range(0-3) Iga serum 182 range (70-400) Thanks, Nicole Pekin, Illinois Answer Dear Nicole, The patient with these results probably does not have classic celiac disease but is likely gluten sensitive and should have either a Prometheus celiac panel to assess "genetic risk" or small bowel biopsy by UE to be sure. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Assoc. Question My daughter just received her results of her upper GI biopsy that was done by a gastroenterologist who doesn't seem to know very much aboutceliac. Her results said "biopsy not normal. Results are indicativeof, but not diagnostic of celiac." When she called the doctor to get clarification, she was told that the doctor wasn't available and to make an appointment to see him in three weeks. I say that any damage means celiac, but my daughter doesn't want to go GF unless she truly has celiac. Her blood tests all came back positive. Many people in our extended family have celiac including her brother and I. Clare Arlington, WA Answer Dear Clare, Often, the biopsy report you describe is the terminology that pathologists report. The fact that the biopsy is abnormal and "indicative " of celiac disease is strong evidence that your daughter does indeed have celiac disease especially when the positive blood tests and strong family history are also known. Most biopsies taken from patients with untreated celiac disease are in fact not "diagnostic" but suggestive of the disorder. "Diagnostic" proof that a patient has celiac disease has traditionally required that a repeat biopsy be taken several weeks after following a gluten free diet. If the repeat biopsy shows correction of the previous microscopic abnormalities, the diagnosis would be confirmed. A rechallenge with gluten to show recurrance of the microscopic abnormalities has been utilized in the past but is not currently recommended in most patients. In my experience, more often than not, celiac patients who go on the gluten free diet are not interested in followup biopsies because they have noted such an improvement in symptoms that they are convinced of the diagnosis and are committed to following the gluten free diet. I'd suggest that your daughter start the gluten free diet now and discuss with your gastroenterologist her desirability of a followup biopsy to confirm the diagnosis. Anthony J. Calabrese, MD FACG Anne Arundel Gastroenterology Assoc. Question My three year old daughter has Type I diabetes, hypothyrodisim and apancreatic enzyme insufficiency. Her GI doctor called yesterday to tell me that her tTg level was high and this could mean she has celiac disease. What is normal range for this test. The only signs she has is greasy stools and this relates to the pancreatic insufficiency. Her GI doctor wants to repeat this test. She was tested two years ago for celiac disease and tested negative. What is the chance that she does or does not have CD. Thank you so much for your help and time. Dana Answer Dear Dana, You should have the test repeated. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Assoc. Question Hello, My 12 year old son is having acute symptoms that continue to increase in frequency/pain. He is on Nexium 40mg in addition to hycoscyamine. Prior to his endoscopy he was on Carafate 2 to 3 times daily. His endoscopy biopsies came back negative. My only remaining concern is that he was still on carafate at the time of the procedure. The understanding I have of the drug is that it coats the stomach to allow it to heal. If my son was on carafate and the stomach had time to heal would it be possible that the negative on the biopsy did not accurately reflect the chance that he did have Celiac disease? I am finding that as I watch his food intake (not removing wheat yet), that he seems to show symptoms more frequently when he eats gluten products. To this point I have not restricted gluten because I plan to take him to an allergist to check for food allergies (just in case). It would help me greatly if you could let me know if my concern about Carafate having possibly resulting in a negative biopsy result for Celiac Disease. Thank you in advance for your time. Lynn Answer Dear Lynn, Carafate should not effect the duodenal biopsies for Celiac. Assuming that he was NOT on a gluten free diet when the biopsies were done, if the biopsies were correctly read as negative, it is highly unlikely that he would have celiac. Thank you, Douglas Dykman, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question Please help and advise. After three rounds of antibiotics, I became very ill, was hospitalized and thwo months later am not yet well. My GI ran the following and gave me these results: IGA ab 6 IGG ab 2.1 Enterolab sent the following results: Fecal Antigladin IGA 36 Fecal Antitissue Transglutaminase 16 My GI assures me I do not have Celiac or gluten sensitivity. Enterolab insists I have gluten sensitivity. My GI did say that I might be gluten sensitive and would remain so until the intestines completely heal from damage done by antibiotics. What is your opinion. Both test were run within 10 days of each other and I was consuming a small amount of gluten. Please help as this is driving me crazy. Patty Smith Answer Dear Patty, Your test results indicate gluten sensitivity but not celiac disease. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates, PA Question Hi I Have been diagnosed with dermatitis herpetiformis a few months ago . Had small intestional biopsy done twice and both came back negative for celiac disease . I have also had two blood tests done for Ttg (transglutaminase antibodies). The values for these tests were both positive 14 and 13 (above 7 considered positive) . I have heard that when these tests are positive they are 93% accurate. I have also been taking 100mg of dapsone a day for a couple of months now and getting blood tests done every two or three weeks . The rash completly cleared up after a couple of weeks . Of course I want to get off the dapsone and have started to reduce dose to 50mg/day . I tried a gluten free diet about a month ago but started up on the gluten again when GI guy wanted to do second small intestional biopsy . I did feel a lot better avoiding the beer and pizza (darn) so I am in the process of going gluten free again . This is a wonderful site and I have learned a great deal about celiac disease/dermatitis herpetiformis , but a few things are still somewhat unclear to me and I would greatly appreciate your answer to the following questions. 1. DH the skin version of celiac disease . Is this really true? 2. Can high levels (Ttg) in blood tests be caused by DH (without any gut involvement)? 3. If I have DH only and not Celiac disease ,This is so confusing because a lot of the information I have read refers to DH and celiac disease going hand in hand , Do I have to completely avoid gluten or can I just get the bulk of it out of my diet? 4. Dapsone alone (without gluten free diet ) may put DH into remission and that I should be able to reduce the level that I take and then eventually go off the dapsone. Then later if and when the rash flares up again , take small amounts of dapsone to keep it under control . Is this true? Thanks for your help. Dave Answer Dear Dave, DH is felt to be universally associated with gluten sensitivity. Although the GI manifestations of celiac disease are often minimal in patients with DH, most patients will at least demonstrate increased lymphoid tissue (immunological cells) on their SB biopsies. Skin biopsies in DH show a characteristic deposition of IgA antibody. This finding resolves with avoidance of dietary gluten. Gluten free diets are effective treatment for DH although a full response is often much more delayed (months or more) than the typical celiac patient's GI response (weeks). Dapsone has been effective treatment to bridge the gap until skin lesions respond to the gluten free diet. Celiac disease refers to the GI disease that results from a sensitivity to gluten. DH is the skin disease associated with gluten sensitivity. Your positive tissue transglutaminase testing strongly supports the diagnosis of gluten sensitivity (and DH) even if your small bowel biopsies have not been interpreted as abnormal. Regardless, the treatment is the same. A strict life long gluten free diet is recommended and should be expected to eventually eliminate the need for Dapsone and reduce long term risks for lymphoma and auto-immune disorders. Thank you, Anthony J. Calabrese, MD, FACG Anne Arundel Gastroenterology Assoc. Question I was diagnosed with Celiac's about 4 years ago because I had severe anemia. I have since been given iron transfusions and have overcome the anemia. I have never followed the diet well and have since been instructed by my physician that I need to take this disease more seriously. My question is this: My father was diagnosed with Mylodesplasia (spelling) and eventually died from it in 2002. Could there be a correlation with him getting Mylodesplaisa from originally having Celiac's disease? I understand it can affect the platelets in the blood. I also understand that Celiac's is a genetically inherited disease and could affect my children. Do you suggest they be screened for this? Jo Ann Olsen EbixLife Inc. - Marketing and Sales Coordinator Ph - (435) 649 5300 ex 100 - Fx - (435) 649 5333 Answer Dear Jo Ann, You need to take the disease seriously. You should follow up with your doctor and follow the diet. To answer your second question, I know of no correlation of myelodysplasia and celiac. All of your first degree relatives should be screened for celiac. You certainly should screen your children. Thank you, Douglas D. Dykman, MD, FACG Anne Arundel Gastroenterology Associates Question I've had a "bad" stomach for years. I've had a colonoscopy and upper endoscopy with normal results. I have problems with gas and diarrhea which can be altered depending on what I eat/drink. I have trouble with caffeine, fatty foods, spicy foods and greasy foods. My doctor just tested me for Celiac and said the results were negative. The transglutaminase AB IGA result was 13 with a range from 0-19. The IGA result was 205 with range from 81-463. I don't know where to go from here. I'm sick of feeling sick! Answer I don't know if Small Bowel biopsies were done when you had your gastroscopy exam. Your blood tests do not suggest celiac disease. Detailed review with your gastroenterologist for other possible diagnoses such as pancraetic problems seems appropriate. Thank you, Anthony J. Calabrese, MD, FACG Anne Arundel Gastroenterology Associates, PA Question I am a 54 year old male. I recently had an IgA reading of 22 which I am reading to mean is weak positive. Should I go on a strictly gluten free diet or simply limit the amount of gluten intake? Thanks, Mick Answer Dear Mick, If that is the only lab test you had that was positive, you needs a confirmatory Prometheus panel or small bowel biopsy before committing to a restricted diet. Thank you, Charlie Cattano, MD,FACG, FACP Anne Arundel Gastroenterology Associates Question Hi, my 5 year old son has been presenting with belly pain on and off for a year. The pain is between the belly button and the breast bone. He feels nausea with it and loses his appetite for days. It has affected his desire to go to school and play sports because he fears not being home when the pain strikes. We have done a Cat scan,liver function test and h pylori. All of which were negative. I was recently diagnosed with celiac and decided to have him tested. All was negative except for IGG which was 16(above 9 being positive) He is not anemic and is growing fine. He just had an endoscopy and we are anxiously awaiting the results of the biopsies. My question is this. If he does not have celiac, what else does an elevated IGG level indicate? I can not seem to find an answer on the net or from my docs. Thank You! Kathy from New York Answer Dear Kathy, Gluten sensitivity is possible, but the biopsy will rule in or out celiac disease. Thank you, Charlie Cattano, MD,FACG,FACP Anne arundel Gastroenterology Associates Question Hello, My 9 year old daughter's blood test for TTG for Celiac disease came back with the following result: 10 and said that negative or normal would be <5. I am confused. Why do some labs say normal is <5 while I see in this forum numbers such as <20 and < 7 as being normal. Do her test results mean she definitely has celiac disease? Your help is most appreciated. Michael Answer Dear Michael, Lab "normals" vary by assay and lab technique, and are specific to the lab performing the test. An elevated TTG suggests a diagnosis of celiac disease. Endoscopic biopsy is recommended when the diagnosis is so considered. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question Hi, I had a celiacs test about 18 months ago and it came back within normal range, does that mean that I am not a celiac only I am still suffering with the same complaints and they seem to be getting worse. Just lately my abdomen has swollen considerably and I can feel the pressure as if there is a football in there. My stomach also swells from the duodenum and causes alot of pain and tha diarhorrea is still present. Many thanks, Jacqui Answer Dear Jacqui, The blood tests are only about 90-95% accurate. You should follow up with your GI for further evaluation. Thank you, Douglas D. Dykman, MD, FACG Anne Arunedl Gastroenterology Associates, PA Question I have had intestinal problems since I was 2 years old and have had chronic diarrhea since I can remember. I guess I was hoping for an answer even if it was Celiac. I'm confused. I just had an endoscopy and colonoscopy and they came back negative for Celiac, however, the doctor said I have gastritis and colitis. My blood work was: (tTG) IgA 4 weak positive 4-10 IgG 21 Positive over 9 IgA 7 Positive over 4 The doctor said to take Pepto Bismo 2 tablets 3 times a day and come back in 6 weeks with the next step being swallowing a camera in a capsule to look at the small intestine. He did not seem concerned about the gluten in my diet. Does this mean I don't have Celiac and do I need to be gluten free? I thought the gluten free diet was helping at least with the fatigue and mind fog, but maybe it was just placebo. Answer I do not understand the serologies as presented. However, it is true that the biopsy evidence in favor of celiac disease can sometimes be spotty and warrant additional biopsies if a question still exists. The capsule may disclose an alternative diagnosis. Thank you, Michael N.Peters, MD, FACG Question Please help, I have had concerns about my persistent elevated lipase. I have had CT Enhanced, Ultrasounds you name it and nothing shows pancreatitis 6 months ago December 1st 2006. It first started in 2002 with feeling of Nausea etc, no Pain though, my labs were 454> 300 normal high. In September of last year I got really sick, all the sign of CD but the only tests that were high was lipase, 426 > 300 normal high. Since then I went downhill, Neuropathies, Diarrhea, Arthritis, DH, Anxiety, Depression and the complete feeling that I was losing my mind. The docs told me I had mild Pancreatitis, and the rest was in my head. Anyways after the scans and constant elevation of lipase, however never more than 50% of normal high I found Med help, they suggested I be tested since the labs were normal. Since then I was tested, Blood results negative, and Enterolab was Positive for many, 30 units above the normal, SOY, and I was high on the fecal fat and I carried both genes, for intolerance and CD SPRUE gene. It's been 6 months of GF and feeling SO MUCH BETTER, although I have been tested here and there and my lipase is still up and down, and it truly scares me. I know that CD can raise it alone, BUT HOW. I worry about the worst and I know I should, but so many Docs, are still not up to date about the mechanism of CD and how it works. My last labs were 2 weeks ago after getting food poisoning, and my lipase was 65 of a normal high of 59, and then a week later it was 75 of a normal high of 59 and yesterday was 85 of a normal high. I have no pain feel pretty good, but since 2002 I have had elevated lipase off and on, I now know that back then is when it all started cause I went from 200 pounds to 162 of when I was finally GF and now gaining back my weight. Can you give me some answers of why the lipase does this?? Is it possible my normal is just higher?? Or just related to the CD and maybe I am still getting Gluten in some things? Sincerely, David VanKomen Web Payment Systems CEO/President 1111 East Draper Parkway Suite 300 Draper, Utah 84020 Phone 801-942-0557 Fax 801-942-0698 Answer Dear Mr. VanKomen, Minor elevations in lipase generally do not mean much. Elevated fecal fats are worrisome. If done in the face of an acute illness, or untreated sprue, they need to be repeated after the acute illness, or are an indication to confirm the diagnosis of Sprue. I am not familiar with the literature on fecal antibodies. Most literature has been done on serum studies. If it has not been already done, you should have a small bowel biopsy while on a normal or high gluten diet. You should see a gastroenterologist. Thank you, Douglas D. Dykman, MD, FACG Anne Arundel Gastroenterology Assoc. Question I recently had a test done for Celiac, I have the lab results but no conversation with the Doctor yet. Can you translate the results for me. According to what I find they show negative for Celiac, but a biopsy showed Celiac suggested. IgA <4 Negative 0-4 Positive >4 IgG <9 Negative 0-9 Positive >9 IgA <4 Negative 0-3 Weak positive 4-10 Positive >10 TTG IgG <6 Negative 0-5 Weak positive 6-9 Positive >9 Endomysial Antibody Negative Immunoglobulin A, Qn, serum 126 Negative 70-400 Thanks for your help. JH Answer Dear JH, The format of the results is unfamiliar to me. Your doctor will interpret the results for you. Thank you, Michael N. Peters, MD, FACG Anne Arundel Gastroenterology Associates Question My five-year-old son has been diagnosed with Crohn's Disease and has gone through two colonoscopies and upper endoscopies to first help diagnose and then monitor his progress on his medication. This January his colonoscopy indicated no improvement and his gastroenterologist wants to start steroids and immunosuppressants. We consulted a "naturopathic" doctor, and on his advice sent my son's stool to Enterolab. Both tests we had done came back positive: fecal antigliadin IgA of 90 (normal <10) and fecal anti-casein IgA 98 units (normal <10). He's been celiac tested (serum) before and it was negative, and also his biopsies from his upper and lower GI series do not indicate celiac. Our gastroenterologist does not think the stool tests are worth their salt, and he believes that we are unnecessarily limiting our son's diet. Our son has no diarrhea problems, but he has had recurring mouth sores, malformed tooth enamel, joint pain, eye pain, and anal ulcers. However, he has had almost no external symptoms for over six months other than poor weight gain and growth. He now has been off gluten and milk (and corn because it seems to bother him) for four months, and he has had good growth and weight gain. Being as he seems to have more internal damage (inflammation and ulcerations on his colon, changes in the mucosa, and evidence of reflux damage) than external symptoms, we are unsure as to whether we will be able to tell if the reintroduction of gluten and casein have a negative effect. He is followed locally and by a doctor at Children's Hospital Boston, and neither of them will consider that he may have sensitivities that are aggravating his Crohn's, and obviously it is hard to keep him well-nourished on such a restricted diet. It seems traditional medicine and alternative medicine don't really meet on the IBD issue. I'd appreciate any insight you have about the validity of his IgA results, or about his case in general. Thank you. Answer The gastroenterologist is right--the fecal test is probably useless, particularly in a child with an already immunologically impaired GI tract from Crohn's. If however a Prometheus Celiac panel has not been done, that may allay the parent's concern regarding a missed diagnosis of gluten-sensitive enteropathy. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question Hello, I have four daughters, three of whom have Celiac Sprue, confirmed through biopsies. They never experienced the classic symptoms, but we take the diet very seriously. They have been gluten free for almost three years and their last antibody results came back negative for all three. We are doing an awesome job! I would love to introduce "gluten free" oats but am very concerned about their safety. While our gastroenterologist feels there is no risk, I have found that the few studies performed indicate that about 1/3 of the subjects who consumed "gluten free" oats had some villi damage. The conclusion seems to be that the protein found in oats may cause damage in some individuals with Celiac. How do I find out if my girls are the 1/3? Is there a way to introduce GF oats and monitor their effects without performing biopsies? Unfortunately my girls never feel any discomfort when consuming gluten so I do not feel we can use their bodies as indicators. Thank you so much! Kelly Gast Answer Dear Ms Gast, Congratulations on doing such a fine job! I agree with your gastroenterologist that cautious introduction of gluten free oats can be done. In the past, most of the confusion with oats was due to contamination of the oats by gluten in the grain processing plants. Since you indicate that your daughters antibody tests have completely normalized on the gluten free diet, it would be reasonable to monitor those antibodies and other lab tests when they're exposed to the oats. If they develop no adverse symptoms and the labs still look good, I'd feel comfortable with them continuing to use it and not resort to a biopsy. Anthony J. Calabrese, MD FACG AGAF Anne Arundel Gastroenterology Associates Question Thank you so much for your reply. If oats do cause a problem, will antibodies show up on the standard blood tests? Kelly Answer Dear Kelly, I don't know for sure as the intolerance occasionally seen to oats may be from oat proteins other than gluten. If there are no adverse clinical or lab test deterioration, I'd feel comfortable with modest oat exposure. Anthony J. Calabrese, MD FACG AGAF Anne Arundel Gastroenterology Associates Question I was recently tested for celiac and had the panel done. Then nurse called and said my number was 247 and that is all she said. I don't know it that is positive or negative or what that means. She didn't know either and said I would have to talk to a doctor. Can you tell me what that means? Thanks, Sterling Answer Dear Sterling, The "number" is meaningless unless we know what test was rendered. You should revisit your ordering physician please. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question Hi, I have a 14 year old daughter who has been sick with various things for several years. I've taken her to lots of doctors and she's been on lots of different medications. It's been incredibly frustrating and she missed many days of school last year. In February a visiting doctor happened to be at her pediatricians and mentioned that it looks like my daughter might have celiac or a gluten problem at the bottom of it all. We got a recommendation for a gastroenterologist and saw her end of February. Eliminating gluten was something that I had been suggesting to her for a long time but it had to come from someone else for her to consider it. At the gastrointerologist's office, the first thing she says is.... Well she's not skinny and doesn't have diarrhea so it doesn't look like celiacs but I'll run the tests anyway. That night my daughter started the gluten free diet. She had just been waiting until the test was done so as not to mess it up. The gastroenterologist had given her prevacid ? I think it was.... for constant nausea. My daughter only had two, and the nausea she had had for weeks disappeared. It was the gluten free diet. Within a short period of time she started sleeping more normally, and had no more stomachaches or headaches. Her need for her inhaler was also reduced. A few weeks later I spoke to the doctor who said all her tests were negative, so she could eat normally and not worry about it. I told her about my daughter's diet change already and what a difference it has made to her. My daughter will not go back to eating gluten products for anything, the change for her was so dramatic. But the doctor was not supportive of this at all. She said several times that with her already being a vegetarian, going gluten free when all tests were negative was putting an undue hardship on oneself. This was very frustrating to hear. I want to find a doctor that is not so old school, but who can recognize that she has a problem with gluten even if it doesn't show up on their tests. That doctor had also done an blood allergy screen and she said nothing showed up. Yet on Easter morning, this would be over a month since she was gluten free, she got very sick, and needed her inhaler, nauseated, stomachache, headache. She had only had a couple pieces of chocolate so far when she got sick at first. I re-checked the ingredients on everything and the Lindt chocolate had barley malt in it. She broke out in some kind of a rash that she is calling hives, but she wouldn't allow me to see it. She gave the rest of her, 99% untouched, Easter basket to her siblings. She never got rid of the rash until she realized that the rice milk she had been drinking had barley malt in it too. I didn't even know she had been drinking rice milk. For about the last month she has been free of the rash until she ate something last week. I am so careful about everything I make for her (I am gluten free too even though all my tests, even the endoscopy were negative (except a blood allergy test showed a 'slight' wheat allergy) - I had been mostly gluten free as much as I knew how to be at the time for a couple years before my test though. Anyway, for my daughter, we have no idea where the allergen came from in what she ate last week, but she had an asthma attack again, bad headache, and the rash. Again she won't let me see it, but she says it hurts more than it itches. Anyway. So, I am in Maryland close to Annapolis. Is there a doctor who recognizes some component in these grains that makes people have a problem even though their tests don't show it? I think the tests must not recognize all the things in those grains that show a problem for some people, because clearly my daughter is reacting. I don't know what type of doctor to send her to for her rash. Does a doctor exist that will recognize she has a problem? She has cut out dairy now also in hopes to lose some weight and also because she wants to be vegan. I don't have a problem with her food choices, but I would like a doctor also who would understand these things with her and help her understand about getting all the nutrients she needs within her choices. Can't someone test her periodically for the B vitamins and anemia and stuff like that? I would like to find someone who can handle the whole picture with her instead of one doctor for this and another for that where I have to explain each time why we are asking for such and such, and there is no real help for my daughter. If there is not one such doctor, at least having a gastroenterologist who understands the whole picture and can give her an official dx would be helpful because then it doesn't look like we are making things up or self diagnosing you know? Thank you for any recommendations. Darcy Annapolis, Maryland Answer Dear Darcy, Your daughter may be "gluten sensitive" even if not "gluten intolerant" by testing. As to choice of "specialist", there are many good options in the Annapolis area to whom your pediatrician can direct you. Charlie Cattano, MD, FACG, FACP, AGAF Anne Arundel Gastroenterology Associates Question Based on my blood work, my primary care doctor says I have "mild sprue" and should eat a gluten-free diet. My GI specialist says the blood work does NOT show a gluten problem. I have a colonoscopy scheduled in two months, so it would be a perfect time to do the biopsy, but the GI doctor says it isn't needed. My tissue transglutaminase Ab, IgA is 2.7 AU ( ref. range for neg. is less than 7.0 AU); the mmunoglobulin A, Serum is 418 (ref. range 68-378). Should I ask the GI specialist to reconsider the biopsy? Jane, North Carolina Answer Dear Jane, No, from the test results that you cite, there is no reason to do a small bowel biopsy. Your primary care physician may have other data that are pertinent, but the tTG Ab is very sensitive and specific for gluten-sensitive enteropathy and should be abnormal if the condition is present. Your results are normal. Thank you, Micheal N. Peters, MD, FACG Anne Arundel Gastroenterology Associates Question Hi, Received bloodwork back for gluten sensitivity in my 5-year old daughter – she has seizures, is developmentally delayed, and experiences constipation, so I wanted her tested for possible Celiac. Here are the results: Gliadin IgG 32.5 Unit: EU Equivocal (25.1-49.9) --Expected values--25.0 Gliadin IgA 10.4 Unit: EU --Expected values-- <=25.0 Reticulin Antibodies Negative *All tests performed by Mayo Clinic Dpt of Lab Med and Pathology The pediatrician told me to follow-up with a Ped GI - I did, and he said he never uses these tests for Celiac and throws them away - because all of us could test "sensitive" to gluten. A celiac support group said this GI is wrong. Should my daughter be on a gluten-free diet?? Answer Not until confirmatory testing is accomplished with a more sensitive measure like t-transglutaminase or anti-endomysial antibodies. These tests are falsely low if gluten is restricted in the diet beforehand. Thank you, Charlie Cattano,MD,FACG,FACP Anne Arundel Gastroenterology Associates Question Hi: I was hoping you might be able to give me some information about the results of a DQ2 and DQ8 blood test that I was recently given. My local Gastroenterologist ordered the test in June. I've called her office several times and they say that the Doctor is still researching the results since they felt there might be some conflicting information. I'm not sure if she is not familiar with this type of testing or if there truly is a conflict in the results. Here were the findings: HLA DR DR Locus: 7,103 DRW Locus: 53 DQ Locus: 2, 5 Method: PCR Note: HLA typing defined by moleular techniques. Serologic equivalents of defined alleles are reported. Test performed by Mayo Medical Laboratories Would you happen to have any insight on these results? I really appreciate any input you might have. Sincerely, Teresa Lehner Answer Dear Teresa, I would suggest that you set up an appointment to review this with the local GI. In general, HLA testing has a statistical correlation with Celiac disease, but it is not diagnostic. You will need a small bowel biopsy and /or Celiac antibodies, if clinically indicated. Thank you, Douglas D. Dyman, MD, FACG Anne Arundel Gastroenterology Associates Question HI MY NAME IS JOANNE AND I AM FROM THE UK. I HAVE HAD RECURRENT ABDO PROBLEMS FOR OVER A YEAR NOW AND LAST YEAR EVEN HAD MY APPENDIX OUT. TWO MONTHS AGO MY DOC ASKED ME IF I HAD EVER BEEN TESTED FOR CELIAC DISEASE, WHICH I HADN'T. HE DID THE PANEL AND THE TTG ( SPECIFITY) CAME BACK WEAK POSITIVE. 2 WEEKS AGO I UNDERWENT A BIOPSY. UNFORTUNATELY THEY ONLY MANAGED TO GET TWO SAMPLES AND NEEDED 6 , DUE TO MY ANXIETY. I CALLED THEM YESTERDAY AND THEY SAID NO INDICATION OF CELIAC YET BUT STILL LOOKING. I WAS ALSO TOLD AFTER IT THAT I MAY HAVE TO HAVE IT DONE AGAIN BUT UNDER GA. THE FINDINGS WERE MODERATE GASTRITIS ( ANTRAL) AND OESOPHAGITIS (GRADE 1). THEY HAVE NOT RETURNED MY FULL RESULTS YET AS THEY ARE STILL LOOKING AT THEM. MY SYMPTOMS ARE AS FOLLOWS : EXTREMELY BLOATED ABDOMEN ( TO THE POINT WHERE I CAN'T EVEN GET MY NORMAL CLOTHES ON, 2 SIZES BIGGER NEEDED)DULL ACHE AND CAN GET QUITE PAINFUL IN ABDO TINGLING IN FINGERS AND SOMETIMES NUMBNESS NO DIARRHOEA BUT HARD STOOLS GREASY BUT NOT CONSTIPATED ( CAN GO UP TO 3 TIMES DAILY SOMETIMES)GUM BLEEDING ( RECENTLY) TIRED AND VERY IRRITABLE, MOODY I AM ALSO DEHYDRATED ( MY LAST BLOOD TEST SHOWED) ALSO IF THE BIOPSY COMES BACK NEGATIVE IS MY DOC LIKELY TO TRY ME ON A GF DIET AND IF IT HELPED WOULD THIS BE A DIAGNOSIS? I HAVE READ AND HEARD THAT THE BIOPSY CANNOT ALWAYS SHOW THINGS UP. COULD YOU PLEASE SHED SOME LIGHT ON THIS FOR ME , MANY THANKS ~JOANNE Answer Dear Joanne, You should await final review of the biopsy. If repeat EGD is recommended with general anesthesia or MAC, monitored anesthsia care, I would recommend to do so. Other work up as per your physician may include colonoscopy or CT. Thank you, Douglas D. Dykman, MD, FACG Anne Arundel Gastroenterology Associates Question My son is 8 years old and has celiac disease. is there any reason he can't play sports such as football? Answer Celiac does not require restriction in any activity other than avoiding dietary gluten. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question Please help! My son who is 33 months has been having stomach issues since February of this year. His pediatrician kept taking stool samples thinking it was a parasite but all came back negative. After allot of persuading from me, he finally did blood work and following the results sent us to a pediatric GI specialist. Here were the results: Antigliadin Abs, IgG 12 H U/mL t-Transglutaminase (LTG..I think..the fax is a little blurry) IGG <1 U/mL Immunoglobulin A, Qn (?) Serum 123 H mg/dL (?) I know the numbers are correct but can't make out all the letters, so hopefully it makes sense to you. Our pediatrician said that there were some "low positives" but our specialist says the "most important" factor for Celiac Disease is negative according to these results. The problem is, my son is still having issues. The specialist said (from an abdominal x-ray) that his rectum was enlarged and he was very backed up with stool. We had to give him medicine to help clean out his system over the weekend but the following 2 weeks he continued to be either constipated (for 2-3 days) or having diarrhea (he was also on Miralax 1/2 cap 2 x a day). After speaking with the doctor he wanted to do another x-ray and my son was still full of stool. So this past weekend we did Miralax 1/2 cap 4 times a day for 3 days to try and clean him out again and are supposed to keep him on the Miralax 1/2 cap 2 x day for 3 to 6 months so that he will void regularly and his rectum will shrink back down to normal size. My question of what caused all this in the first place still has not been answered and from all the reading, I'm not convinced that my son's lab values aren't conducive of celiac disease. Our family eats very healthy including a lot of veggie meats, which I've learned are full of gluten and I don't want to be causing him further problems as it's already been 7 months. We also eat plenty of fruits and veggies and my 2 year old will tell you his favorite food is spinach, so I know fiber isn't an issue. Can you tell me if the lab values are negative for Celiac Disease and if so, what could be the other underlying causes of his problem? Thank you Angela Nashville, TN Answer Dear Angela, The negative transglutaminase Ab is not consistent with celiac disease. The list of possible diagnoses is too broad to cover here. Please discuss this with the GI specialist your child is seeing. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Associates Question I have been suffering for almost 15 years with stomach problems. I was diagnosed with hypothyroidism around the same time. I have a 31 year old son who was diagnosed Type 1 diabetes at the age of 11. I was always concerned about his growth pattern, he was always very low on the charts. He is now considered a "brittle" diabetic based on the fact that he cannot maintain good control of his bs levels even though he tries very hard. He has never been tested for celiac disease and neither have I but am wondering if there could be a connection since it is a hereditary disease. I have had a colonoscopy, upper and lower GIs with no negative results. I have been told that I most likely have IBS but my symptoms are not totally consistent with what I read for the disease. I cannot eat anything without extreme bloating and almost instant feeling of fullness and being extremely uncomfortable. Most of the time after using the bathroom, I will feel somewhat better and the bloating is relieved, however sometimes I feel worse. I do not have traditional "diarrhea" but have the feeling of urgency to go to the bathroom often. My questions are, should I be tested for celiac and also have my son tested. He has a terrible time with his diabetes and wants to just give up. I know these issues may be difficult to answer based on what I have written but I would appreciate your professional opinion. Thank you, Sandra Answer Dear Sandra, There are studies that suggest about 1 in 100 type I diabetics also have celiac disease. It would be reasonable to screen both you and your son with serologic testing. Thank you, Douglas D. Dykman, MD, FACG Anne Arundel Gastroenterology Associates Question To Whom it May Concern: I am 46 years old Mom. I was diagnosed with celiac disease 6 months ago. My first cousins all have it which is my Dad's sister and her children and grandchildren. I also believe that my Dad may have died from it he had autoimmune Kidney disease. I have both the genes for it. I just had my 18 year old son tested the celiac panel was negative but the gene test was positive for the DQ8 gene. What does this mean? Thank you Ellen Gaffney thegcats@comcast.net Answer Dear Ellen, It means that you are at some risk for the disease, but currently appear not to have it. The “celiac panel†is 90-95% accurate. If you develop symptoms, you should have GI consultation and possible an upper endoscopy or small bowel biopsy. Thank you, Douglas D. Dykman, MD, FACG, AGAF, FACP Anne Arundel Gastroenterology Associates Question My 2 1/2 daughter weighs 28 pounds and is about 33 -34 inches tall (weight is current, height was measured at last well child checkup and I can't really remember it!) My own first cousin on my father's side has celiac. My paternal aunt had lupus (dead over 30 years). my daughter stools about 3 to 5 times a day and sometimes they are mushy and bulky. I have done the dump down the toilet to see if they float "test" and they sink. They range in color from dark brown to green. Never black, grey, white, or red. She doesn't stool at night. She is a very picky eater to begin with so that may have something to do with the weight. Her ped did a celiac disease comp panel and here are the results - IGA, Serum result - 51 (normal range 24-121) Gliadin AB (IGA) result - <3 (normal range <11) Tissue Transglutaminase AB IGA result <3 (normal <5) This is thru Quest Diagnostics Lab. I already have an appt with a gastro ped. later this month and will take a copy of this lab report with. A CBC and CMP were done as well; the only concerns were that her platlets were slightly elevated (which they said could be due to the blood draw itself and we had it repeated and are awaiting results) and her creatinine was 0.4- slightly low - and the bun/creatinine ratio was 35.0 - high. Does she present as celiac based on this data? Thanks for your time! Christina Answer Dear Christina, Based on serology, she does not present as Celiac. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Question Dr. Cattano, Thanks for your message. The following results arrived today from Enterolabs (stool testing) - how can serology and stool tests be so different?? According to below, she sounds like she has celiac! Please advise! :-( Thanks, Christina ************************ Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value Fecal Antigliadin IgA 222 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 163 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal anti-casein (cow’s milk) IgA antibody 155 Units (Normal Range <10 Units) HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0301 Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7) Christina Ramirez Answer She may be gluten sensitive, but question of celiac disease may ultimately require duodenal biopsy. Please discuss this with gastro ped with whom you have your appointment. Do not restrict gluten if biopsy is planned (or sensitivity of testing will be diminished. Thank you, Charlie Cattano, MD,FACG,FACP Anne Arundel Gastroenterology Question Dear Doctors: This is to thank you for valuable information provided by your staff and experiences shared by other patients. It is reasuring to learn that I have not been alone in my struggle to get competent, quality, compassionate accurate diagnosis and followup treatment plan. The search has been equally physically exhausting, emotionally draining and demoralizing due to the endless "round-a-round" and often rude, berating responses from some doctors, nurses and office staff. I have experienced what some of your contributors have shared about lack of professional answers and followup. My GI problems started abruptly over ten years ago manifesting with copious muscus production both from nose, mouth, abdominal-gut and in stool and rectum with 30 pound weight loss, no appetite for over two months, loss of taste and smell that persisted for years. over a period of time the symtoms and signs became broader. 1999-2000 an allergist ordered some immune tests. some results were abnormally high in some areas and extremely low in others. Also showed AB to pneumonia and "off the chart" high to tetanus. My quest has been downhill since then. My question to your medical staff although broad, is what conditions are manifested with an abundant mucoid production? Also, Do you value the findings of Henry Kunkel and if so, how can I locate doctors who concure with his studies? Thank you kindly for your time and response. Sincerely, Colette in New Jersey Answer Dear Colette, I would suggest you schedule a consultation with a local GI to fully discuss. Thank you, Douglas D. Dykman, MD,FACG Anne Arundel Gastroenterology Alternate Answer With regards to Colette's question, "what conditions are manifested with an abundant mucoid production", there are 3 main categories. But before going there, the question that needs to be addressed is WHY is the body producing mucous? This patients immune system is operating on "High Alert" status-the question is why. Heavy metal poisonong, poor lifestyle and dietary choices, toxic chemical exposures and accumulation in her body,... the list is extensive as to why her immune system is on high alert. One of the manifestations of a 'high alert' immune system is excessive mucous production. This is ALWAYS associated with the body's response to some toxic exposure. And there are at least 3 main categories where that toxic exposure may be coming from and must be ruled out. The first category is poor digestive function. This may be some degree of sinus congestion/recurrent infections due to a localized colonization (fungal or bacterial)-could be an airborne continual exposure (i.e. moldy house), atrophic gastritis, intestinal permeability (Leaky Gut), or bacterial contamination in the stomach (Heliobacter Pylori). The second category is an imbalance in the intestinal millieu. This could be parasitic infections (bacterial or fungal), and/or a lack of protective flora. This is very common-must check for mucoid E. coli and Klebsiella Pneumoniae in the gut. The third category (and most common) is that of food allergies. We all know that if we eat too much pizza, we get 'plugged up' afterwards-it's mucous production from an excessive amount of dairy exposure. And what most Celiac patients don't realize is that their allergy to gluten is not isolated. We will be publishing later this year a paper that demonstrates that an allergy to gluten is rarely isolated. the most common ancillary allergens commonly identified in celiac patients are dairy, soy and egg-there may be others, but those are the most common. Hope this helps. Thanks again for your efforts. Tom O'Bryan, DC, CCN, DACBN 28379 Davis Parkway Suite 801 Warrenville, Illinois 60555 (630) 836-9900 Question Hello- My son is 9 years old and has trouble with constipation for 3 years. He saw a pediatric gastroeoligist who ran a celiac panel. The resuls are listed below. His doctor is not sure if he is celiac, but she wanted him to do an elimination diet for 3 months and she will do blood work and another endoscope when we go back to see the doctor.She said she may do the gluten challenge. positive - HLA DQ8 (DQB1*0302) Reticulin IgA Autoantibodies <1:10 titer Endomysial IgA Autoantibodies <1:10 titer Gliadin IgG Antibodies 72.3 U/ml Gliadin IgA Antibodies 14.2 U/ml Transglutaminase IgG Autoantibodies <6.0 Uml Transglutaminase IgA Autoantibodies <4.0 U/ml Darrell Rose Answer Your son may be gluten sensitive, but probably does not have Celiac disease. Thank you, Charlie Cattano, MD, FACG, FACP Anne Arundel Gastroenterology Question My 7 year old daughter has had abnormal liver function tests for the past 9 months, after a bought of vomiting resulted in lab work at a New York Hospital. The ALT and AST have come down from 212 and 183 in February to 122 and 99 in September. A CK test was also run this month and was found to be 1154. Her GI specialists have now passed us along to the Neurology department. All other lab work has been normal (bilirubin, ALK, GGT, Amylase, Lipase). Liver ultrasound is normal. She has a history of asthma/pneumonia and sporadic vomiting during the night (a handful of occasions during her life..) She is otherwise a healthy and very active 2nd grader and has no symptoms. Height and weight are 50th and 75th percentile. Could the abnormal blood work be due to celiac disease or gluten sensitivity, or could they also be due to asthma? Nia, Mill Valley, CA Answer Dear Nia, The short answer is yes. Additional testing is suggested by your GI specialist. Thank you, Charlie Cattano, MD,FACG,FACP Anne Arundel Gastroenterology Associates Question I'm a 53 year old female with no symptoms of celiac disease, but my health professional suggested I have a stool test for gluten intolerance because my mother had ulcerative colitis and then colon cancer, which took her life at 49. My EnteroLab results were: Fecal Antitissue Transglutaminase IgA at 31, Fecal Antigliadin IgA at 20, and Fecal Fat Score of less than 300. I'm very confused whether or not to go on a gluten free diet, restrict gluten in my diet, or ignore the results. Having no symptoms and being in good health, it seems ridiculous to go gluten free, although restricting processed foods is a good idea in general. Please HELP! What should I do? Thank you, Nicky Answer Dear Nicky, I doubt that this testing was ordered by a gastroenterologist. These tests are currently not accepted as "standard of care" testing for celiac disease. A brief look on the internet reveals a lot of confusion about this labs testing results. I'd suggest that you consult with a gastroenterologist to review your particular situation. Thank you, Anthony J. Calabrese, MD, FACG, FACP, AGAF Anne Arundel Gastroenterology Question Hello, I was hoping you could clarify some things for me! I am a 31 year old female. My medical history includes autoimmune hypothyroidism, psoriasis/eczema, mild asthma. About a year ago, my pcp ordered a celiac blood panel because of my chronic low ferritin levels (fluctuate between 3 and 15). The blood work was all negative, and I did not really think much more about it, just coninued with iron supplements. My ferritin levels would jump around, occasionally being in the low normal range, but more often around 8-10. The lowest it has been is 2. A few weeks ago, my pcp asked if I ever experienced excess gas/bloating. When I said yes, he decided I should see a gi doc for an egd to completely rule out celiac disease. At the time, my ferritin was 5, and my hemoglobin was 12.5. The results of the EGD were "increased intraepithelial lymphocytes without crypt destructionand villi atrophy, suggestive of but not specific to Celiac disease; clinical correlation required". The gi doctor then ordered a repeat CBC, ferritin, and celaic panel, including an IgA level. My ferritin had risen to 11, my hgb was 13, and everything on the celiac panel was negative. My IgA level was 100, which was low normal. I go back for a follow up on wednesday 10/3. Here are my questions: Do you think I have celiac Disease? Although I know gluten free is a big change, I am willing to do it - I worry about the increased risk of cancer. Is is possible to have negative blood work, including a normal IgA but an abnormal biopsy? What besides celiac could cause the increased lymphocytes? Would the fact that it would be an early stage of celiac cause the bloodwork to be negative? Would you recommend trying the diet, and if my feritin levels improve, would you suggest that to be diagnostic? Will my autoimmune thryoid factor in the diagnosis? I know that having this puts me at higher risk for developing Celiac. I guess I am worried that since all my bloodwork is negative and my only signs/symptoms are the low ferritin and bloating, the doctor will automatically say it is not Celiac. Its not that I want a diagnosis of celiac, but at the same time, do not want to conitinue to eat something that is harming me. Thanks so much Erin Answer Sorry for the delay. Here are the answers. 1. Gas and bloating are nonspecific complaints and not diagnostic for celiac disease 2. Iron deficiency anemia is common in celiac disease but more diagnostic for non-responders to supplements. You have responded to supplements, and there is no mention of your iron level. Ferritin levels can also be decreased in menstruating women, like yourself. 3. No, I do not think you have celiac disease or an early stage especially with negative serology. It would be positive if the low ferritin was secondary to celiac disease. 4. The increased risk of cancer is equivocal from the studies that have been done. 5. Peptic duodenitis (increased acid production) can cause those changes seen on your small bowel biopsy. Would suggest you be treated with proton pump inhibitors and maybe repeat EGD. 6. No, I would not start a gluten free diet 7. Ferritin levels are not diagnostic, iron deficiency anemia (low iron and ferritin, and high TIBC) is common. Especially if you do not respond to supplements, it is more diagnostic. Again, monthly menses cause also cause this picture. 8. Yes, autoimmune disorders such as type 1 diabetes and autoimmune thyroiditis is associated with celiac disease. -You had very good questions! Good Luck! Melanie L. Jackson, MD Anne Arundel Gastroenterology Assoc. Question Dear Doctor- In the past 3 years I have been diagnosed with Leaky Gut syndrome. It started with lactose intolerance. A year later I had sensitivity to gluten, oats, most beans, broccoli, corn and nuts. Presently it looks like I may have to cut out milk protein and pumpkin. I have never been tested. I just have been eliminating foods from my diet that make my stomach hurt and bloat. Should I be tested ? Do you treat Leaky Gut? thank you mary Answer Dear Mary, I would suggest you consult a GI and have a formal evaluation. Thank you, Douglas Dykman, MD, FACG, FACP Anne Arundel Gastroenterology Question If you have just finished a course of prednisone could it affect the test for celiac? Patricia Answer Dear Patricia, It probably would not, but I am not aware of any definitive data on the subject. Prednisone is not an accepted treatment for the condition, however, so the diagnostic serologic findings are likely to persist through the course of prednisone. Thank you, Michael N. Peters, MD, FACG Anne Arundel Gastroenterology Question Hello, I have a few questions that I can't seem to find the answers for, hopefully you can answer some for me. Celiac runs in my family, my mother has it and was diagnosed by biopsy. I am 31 and hadn't had any symptoms until July of this year. In July I had a sudden onset of the typical celiac digestive symptoms and after about a week decided to cut out gluten to see if I got any better and also got a blood test within a day or two of cutting out gluten. At that point the blood tests were all positive and my Dr said that I had celiac, she said I did not need a biopsy. Since cutting out gluten I felt much better. A few months later I presumably got glutened at a restaurant and got sick right away. Two weeks later I had the blood tests again which came back negative. A week after the those blood tests I finally got a endoscopy/biopsy which came back negative. The GI drs are reluctant to call it celiac since my biopsy was negative. I would have expected this as I was on the gluten free diet for so long and also only had symptoms for a short time in July. Aside from the accidental gluten ingestion in October, the digestive problems seemed to go away since the end of July. I've scoured the literature and cannot determine what other types of things could cause these positive blood tests in July besides Celiac. I am also under the impression that most cases of celiac had not been diagnosed for a long time leading to more severe intestinal damage and therefore positive biopsy. I feel as though if I do have Celiac, I caught the onset of it early since I knew what to look for. Did I therefore minimize the damage and therefore diagnosis? Is it possible to have ttg levels that high and respond favorably to gluten free diet and not have celiac? Can gluten intolerance cause that? I feel as though my only option now is to go back to eating gluten and get another biopsy done. If I do decide to do that, how long does it take to mount an immune response after eating gluten and also how long would it take to result in a positive biopsy. Thanks for any information you can give me. -Ezra Schildkraut Answer Dear Ezra, It is certainly within precedent to have a normal (or at least "non-diagnostic") biopsy after a gluten-free diet is initiated, especially if the duration of symptoms had been very brief, as in this situation. The initial antibody panel results are probably diagnostic of celiac disease and the favorable response to the gluten-free diet clinically confirms the diagnosis. I would advise you stay on the diet indefinitely. If future accidental exposures to gluten occur, a ttg level done within about 48 hours may be of interest. Thank you, Michael Peters, MD, FACG Anne Arundel Gastroenterology Associates Question Dear Doctor; I saw my PCP yesterday to discuss the terrible symptoms I have been experiencing (i.e. ataxia, dizziness, tinnitus, brain fog, etc). He reviewed some of the blood test that were done and did notice that I tested positve for the gluten sensitivity. The results were: Gliadin AB IGA-Result =26 (Reference Range 0-19) Gliadin AB IGG-REsult =61 (Reference Range 0-19) Transglut IGA-Result = 18 (Reference Range 0-19) My doctor advised that I see a "G.I." doctor to discuss and mentioned that a biopsy might be an option, but the G.i. doctor would know more. He is making an appointment for this. I was wondering if these numbers could possibly mean I have celiac disease. Any comment is much appreciated. Thanks doctor. Regards; Ed S. Answer Dear Ed, Yes, these results suggest you may have celiac disease. An upper endoscopy with biopsy of the small intestine is imperative to confirm the diagnosis. Good Luck! Melanie L. Jackson, MD Anne Arundel Gastroenterology Associates Question Thank you Dr. Jackson for your response. I will see the G.I. doctor next week. I was wondering, can Celiac disease cause my symptoms I am experiencing (i.e.ataxia, dizziness, tinnitus, brain fog, etc.). If possible, any comment is much appreciated. Thanks Doctor. Regards; Ed Skwirz Answer Dear Ed, No, those symptoms are unlikely to be caused by celiac disease. It sounds like a neurological problem or inner ear. Should see your PCP in regards to those symptoms. Thank you, Melanie L. Jackson, MD Anne Arundel Gastroenterology Associates Question My 31 year old son was just tested for celiac disease. His Gliadin AB IGG level was 15, which is elevated. Other tests on the celiac panel were within normal range. He very often suffers from diarrhea, excessive gas and stomach cramps. He has been diagosed with IBS, but I am concerned that he might have a gluten sensitivity. Is the Gliadin AB IGG test definitive for Celiac disease? Any information or additional testing you might recommend would be greatly appreciated. Robin Answer Robin, The tests are not 100% sensitive or specific. With this scenario, your son should see a GI and most likely should have a small bowel biopsy. Thank you, Douglas D. Dykman MD, FACG, FACP Anne Arundel Gastroenterology Associates Question My husband is a physician (OB/GYN). What tests should he order to see if our son has celiac disease. He is unfamiliar with which blood panel would be best. Thanks. Robin Answer Robin, Tissue transglutaminase Ab (IgG and IgA) are easily accessible and have good sensitivity. Thank you, Charlie Cattano, MD, FACG, FACP, AGAF Anne Arundel Gastroenterology Assoc. |
