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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 mom2J

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  1. Hi,   My daughter was diagnosed with Celiac disease about 4 months ago.  At the time of diagnosis, her Tissue transglutenase antibody was 120.  Her small bowel biopsy came back very + for celiac disease.  Fast forward 4 months later and adherence to a strict gluten free diet, and her antibody level has only dropped to 100. So 20 "points" so to speak.  When the nurse called, I was under the impression that meant she was still in contact with gluten and that if she is adhering to a strict gluten free diet, we need to double check some more where this might be coming from.  I'm racking my brain unsure where this mystery gluten is getting into her system.  And I feel horrible that after 4 months of her completely changing everything about her diet, this only dropped 20 points. My question is, is it unusual to have only dropped this much in four months, or is it possible that it could just take some time?  I will be going over all ingredient lists again in all the food she consumes as well as soap and hair products etc... but we have been so very careful about this. And I do want to add that she has felt so much better since going gluten free.  She has gained 10 pounds already since diagnosis (in her case this was needed) which tells me something is going well.   Thanks in advance for any advice/help with this.    
  2. So today we met with a nutritionist that works in the Pediatric GI clinic where my daughter is being treated.  That was a very informative and a helpful resource.  We both came home with a thick Celiac disease and gluten free diet booklet.  They also sent her home with a huge bag of Pediasure samples due to her being extremely low weight for her height.  Also, I was able to obtain a copy of the pathology report, and I had thought the Dr. had said she was a Marsh 3b, but I must of misunderstood because the pathology report says 3C.  Does that mean complete villous atrophy? I also thought it was interesting that they measured her digestive enzymes in her tissue samples.  I didn't know they did that.  She was severely deficient in all but one of those. 
  3. This is good to hear, and thank you for warning me about the possibility of it not being immediate.   It is so interesting that you mention the heat intolerance.  My daughter has that as well.  She has been intolerant to heat for as long as I can remember actually.  I wonder if that is somehow related. 
  4. Hi all!   So her pediatric GI called with the biopsy results.  They confirm Celiac disease. The pathology report said it was graded Marsh 3b.  Poor girl.  Well now we know why she has been feeling so awful and have an answer. She also had gastric inflammation, but no presence of H. pylori or other microbes.  So he is prescribing some meds for that.  Anyone else have this in addition to Celiac at diagnosis?   Another question…has anyone else had or has their child had anxiety associated with celiacs that improved after going gluten free?  She has a lot of anxiety and is severe enough to require visits with a psychologist.  This started about a year ago, about the same time all her other symptoms started.     Thanks again!
  5. Thanks again to all of you who have replied.  All very good information to be aware of.    As far as why the Dr. gave permission to go gluten free, was because previously they asked us to keep her on her normal, gluten containing diet so as to not affect the test/biopsy results.  It was the day of the biopsy he said we could do gluten free now. And yes, he also did inform us that we all need screening for celiacs if she is positive for it. 
  6. Thank you for the replies.  I appreciate it.  No she has not had any blood work to check for nutrient levels.  She has had a couple of complete blood count tests the last few weeks to follow an abnormally low WBC count as well as a high lymphocyte count.  In doing these tests, we do know that she does not have anemia. Her lymphocyte count came back down to normal on the second test, but WBC is still low.  I am not sure why they only did the one celiac blood test.  It was her endocrinologist who follows her thyroid that ordered the test, not the GI dr.  I guess the GI Dr didn't feel it was necessary to do more blood work ….?  He just recommended getting the biopsy at that point.  If it comes back pos. for celiac, should I still ask for nutrient blood tests?  We were given permission to remove gluten from her diet after the biopsy was done, and the GI Dr said he recommends she meet with their nutritionist if the biopsy comes back positive for celiac.
  7. Hi,   So this is my very first post on this forum.  I am anxiously awaiting the results of my daughters biopsy.  Here's a little history, and I do have one question.  She became "sick" with vague, non specific symptoms almost a year ago.  Episodes of feeling awful (fatigue, dizzy, nausea, headache and a couple of times throwing up with no clear understanding why).  We took her to Dr, and she had blood work done that revealed she has autoimmune Hashimoto's thyroiditis.  (she is 12 years old)  It took a good 8 months to find the right dose of medication for her, as she kept swinging back and forth from hypo to hyperthyroid.  After blood tests consistently revealed that her thyroid was under control, but she was still feeling miserable with almost daily episodes of similar symptoms listed above…we took her back for further testing.  She had a celiac panel done about two months ago that revealed  high levels of tTG-IgA (her # was over 120). They didn't do any of the other tests.  She had her biopsy on Monday.  Path report won't be back for a week or so.  My question is that the doctor showed us pictures of the area where he saw some abnormalities. In the duodenal bulb and duodenum.  The abnormality was numerous nodules.  He said sometimes they see this in celiac patients but won't know for sure until path report comes back.  I was wondering if any of you had similar initial findings from the endoscopy, and if this is a clue that she has celiac.  I know I only have a few days to wait, but its killing me… Other symptoms she has are: difficulty gaining weight (has been around 80 lbs for over  year now), no exercise tolerance, anxiety, severe eczema on her hands, bloating after eating…will eat just a small amount and feel full too soon, etc..  She doesn't have any classic symptoms of abdominal cramping, diarrhea etc..the only gastrointestinal symptoms are the nausea and bloating…  Her doctor has said that he has seen some cases of patients with other auto-immune disorders show high levels of the tTG-IgA with no evidence of celiac on biopsy, and due to her "non-specific" symptoms and the absence of abdominal pain/cramping and diarrhea, he won't say that this is likely Celiac until after path report comes back.  We hope she doesn't have it, but it would be nice to have a solid answer.  Anyway, I guess I am mostly just sharing our story, but would love any feedback if anyone has anything to share.     Thanks in Advance,