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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About karenlynn

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  1. My blood work is finally back and I am not positive for celiac disease, however I'm wondering if there's any indication of possible sensitivity. tTG IgA <2 (reference 0-3) Gliadin Peptide IgA 16 (reference 0-19) Gliadin Peptide IgG 2 (reference 0-19) Obviously none of my tests are positive and they didn't my total IgA levels like I had requested. I'm not sure whether or not the elevated IgA levels mean anything or if I'm just plain old good to go. Thank you!
  2. Thanks, everyone. The biopsy results are finally beginning to roll in and I'm feeling tremendously discouraged :-( Thus far all we have are the results of the Lactase Tissue and Sucrase Tissue tests. Surcase, Tissue: 37.0 (>=25.0) Lactase, Tissue: 18.5 (>=15.0) So from what I gather the tests are both normal. From what I can find, children usually have very high lactase levels and as we grow the number begins to decrease. It seems to me that for her to be close to the cutoff for lactase when she's only 2 years old is interesting, but I know it won't mean anything. From what I understand of villous atrophy (and I'm not a doctor so I may not be understanding this correctly at all) you are pretty much guaranteed to have lactase deficiency when villous atrophy is present because the lactase enzyme is found at the tip of the villi. If the lactase levels are normal then I assume her villi are in tact or only very very minimally damaged (certainly not damaged enough to warrant a celiac diagnosis). Is it possible to have celiac disease and not have lactase deficiency? I truly believed we were on the right track. Just the other day she had PB&J on whole wheat bread for lunch and for dinner she had whole wheat macaroni and cheese and I watched her belly grow more and more distended with each meal. She sat at dinner and just cried. That night I thought "tomorrow we're in for a nasty poop!" She woke up the next morning with greasy looses stool (tremendous amounts of it) that smelled so strong and foul that I could smell it before I entered her bedroom (she's in diapers). I really hoped for a solid diagnosis for her. At this point we'll likely have to just remove gluten and settle for no diagnosis.
  3. My 2 year old underwent an endoscopy and sigmoidoscopy on Wednesday. The doctor said everything looked good, nothing to be concerned about, and we'll have to see what the pathology report says in 2 weeks. I'm curious how likely it is that she could have celiac disease with there being no visible concerns to the doctor. I'm assuming that because of her age there's a strong likelihood that the damage wouldn't be extensive enough to be visible to the naked eye? Her blood tests were all negative (I wasn't given exact numbers, just says "negative"), but we were told that is common in young children. Between the blood results and the doctors visual assessment of her intestines I'm beginning to think it's very unlikely that she has celiac disease. If she doesn't then I don't know where else to turn to explain her "failure to thrive", distended abdomen, pain, excessive gas, constipation, diarrhea, irritability, etc :-(
  4. My primary care doctor ordered a tTG IgA and a DGP IgG upon my request. I specifically requested a total IgA (technically I requested a FULL panel and specified a total IgA) , but it appears it wasn't ordered. After 2 weeks I have finally received the tTG IgA results and am still waiting on the DGP IgG results. The tTG IgA says this: Tissue Transglutaminase Ab. IgA, Serum Quantitative Result <2 U/mL Reference Range 0-3 Obviously the result is negative, but without the total IgA count how much weight should I give to this result? I know there is some possibility that I could be IgA deficient, but what's the likelihood that this is a false negative without knowing my total IgA status? The doctor seemed very dismissive of my request for a celiac panel. I'm concerned that if my DGP is positive that she'll dismiss it due to the negative tTG IgA (I'm having this problem with my 5 year old who tested negative DGP IgA and weak positive DGP IgG). Thoughts? Thank you!
  5. Thank you so much, Nicole! I'm sorry I didn't see this sooner! I really appreciate all of the articles! I'm going to begin a new thread, like you suggested. I have a few updates and other questions as well :-)
  6. The primary care doctor said that a DGP IgG of 20 is nothing. He said that with celiacs they see numbers much higher than that. I asked him why her numbers were in the positive range if it isn't celiacs and he said he doesn't know. He out in a referral for the GI anyway, but he doesn't think anything will come of it. I do understand where he's coming from (it is a very weak positive), but I cannot find any literature anywhere that explains what else could be attributed to elevated DGP IgG. Any ideas? Everything seems to say that the DGP IgG levels do not in anyway indicate gluten sensitivity so why are the numbers above normal?
  7. I definitely don't expect a diagnosis based solely on the results of the blood tests they ran. The doctor that ran the tests is her primary care so I'm not certain how well versed he is in celiac testing. We plan to go gluten free regardless of everyone's test results because I believe it's absolutely worth seeing what may or may not change on the gluten-free diet, but we're obviously staying "glutened" until we get through all the testing. I had blood drawn today by my primary care doctor and should have the results at the end of the week. My 5 year old (who we've been discussing) is from my first marriage and her dad won't even discuss any of this with me. This is another reason why if she does have celiac disease it's crucial for her to be diagnosed. It will be nearly impossible to get her father to enforce the gluten-free diet during his visitation even with a firn diagnosis. If she's gluten sensitive and not celiac, he will not agree to her following the diet when she is with him. My 2 year old is from my current marriage and her dad (my husband) has a cousin who had celiac disease. My husband plans to get tested when we move this summer. He is in the military and if he is found to have celiac disease it's going to have a major impact on his career. It will be easier to wait until we finish this move before he opens that can of worms.
  8. Thank you for your response! I agree that the literature seems to indicate that the likelihood is high that a positive DGP IgG is pretty reliable. I'm just anxious that the doctor won't agree to investigate any further because it was a weak positive, the other test was negative, and some of her symptoms aren't "classic" (such as the constipation instead of diarrhea). I'm going to bring a copy of that report with me when we speak with the doctor tomorrow. I wish they had done a total IgA so I knew whether or not to put much stock in the results of the DGP IgA.
  9. I'm completely overwhelmed trying to understand all of these tests/results and what the doctors are telling me. I really appreciate any help you can offer! Two of my daughters are currently undergoing testing for celiacs. My 2 year old is "failure to thrive". She's below the 3rd percentile in weight (she was 8lbs 12oz at birth), greasy and mucousy stools, alternating constipation and diarrhea, extremely distended abdomen with the skinniest little arms and legs, speech delay, extreme irritability, etc. Her celiac blood panel came back negative (actual numbers aren't listed on the lab work), her vitamin levels are all the lowest possible levels within the normal range (in other words, none are in the low range but they're JUST within normal), her alkaline phosphatase and white blood count were high (not extremely). She tested negative for cystic fibrosis. She is scheduled for an endoscopy and sigmoidoscopy in 2 weeks. Her GI said that the blood work is very unreliable in a child who has just recently turned 2 years old. My 5 year old has been struggling with chronic constipation and UTIs. Over the last 2 years she has developed a rash that comes and goes (circles of what the doctor has diagnosed as eczema on the trunk of her body, arms, and knees). Over the last month she has begun complaining of severe abdominal pain. She will randomly begin to scream and clench her belly. The doctor said she was constipated and put her on miralax. After a month on miralax and her stools coming soft and regularly she is still complaining of abdominal pain. Now that she is no longer constipated we have noticed that her stools are a pale sort of yellow orange and they float. Her primary care doctor drew her blood last week and her DGP IgA was 4 (0-19 normal), her DGP IgG was 20 (0-19 normal), the endomysium titer was negative <1:10. I am still waiting (over a week) for the doctor to call me and explain the results, but the nurse said everything looks normal. Everything I can find makes me think that the 5 year old's DGP IgG being high should warrant further investigation. I want to be prepared when the doctor calls in case he also tells me everything is normal. Is it likely that either of my children could have celiacs based on the results we've gotten thus far or does it seem unlikely? I appreciate your thoughts and advice!