• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Mamatomy8

  • Rank
    New Community Member

Profile Information

  • Gender
  1. When my son first started having really severe symptoms, about July- his bloodwork showed a low hemoglobin of 9. In Early Sept. he was tested again and it dropped to 7! Now he was retested last week and it went up to 11. The dr. has no explanation for this, as he has tested negative for all his celiac tests.. but I put him on a gluten-free diet in mid Sept. Is it possible the change in diet improved his anemia in that short a time? He has not been on any iron supplements except through his tube feeding formula, nothing has changed in that period of time except for taking out the gluten.
  2. when my son was on gluten and horrible horrible gas pain/ abd. bloating (belly looked like a 9 month pregnant belly) he would start holding his urine for long periods of time,and he was not potty trained yet. Once when he was hospitalized he didn't urinate for 24 hours, until they placed a catheter-and it wasn't dehydration because he was getting IV fluids. Strangely, nobody seemed concerned about this, except me!? For weeks following his episodes of bloating, he would got 8-9 hours without urinating. Now that he is off gluten, he urinates much more regularly - like every 3-4 hours. Is there a link related to gluten , or maybe just because the bloating was blocking his bladder?
  3. Thank you for your response. My son was also found to be lactose intolerant with the biopsy- but he never had dairy much before that either. Interestingly when I took a celiac class at childrens hospital every parent in there with a celiac child also was lactose intolerant .
  4. hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling stools.at his last hoapital discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy. And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?
  5. Got results of my celiac blood test and they were negative. Also today I had the endo/colonoscopy (trying to rule out cause of severe anemia). Nothing abnormal found,and biopsy was taken. Anyone know how long that takes to come back? I'm frustrated that there was nothing abnormal found (yet thankful no cancer, ulcers,etc) but I really would like to know why I was so anemic. It would just be nice to know if I need to be completely gluten free.
  6. just curious. What first led to me being tested for celiac was that I was very fatigued, went to the dr. and found out my hemoglobin level was 5 !! Went for procedures today and none of the nurses could believe I was functioning at all at that level. I'm guessing my body just compensated for it, and it happened so slowly it wasn't obvious how sick I really was. I had a blood transfusion and have been on iron for a month and post transfusion, my level has stayed at a steady 10. Still low, but acceptable. I was hoping it would get at least into normal range by now.
  7. Well my blood test was negative... feeling discouraged. Endo /colonoscopy tomorrow. I'll be glad when that is over with, but I really need some answers! Had my hemoglobin retested and it hasn't gone up since my blood transfusion a month ago- still a bit low and I've been taking iron faithfully. hmmmm
  8. Thanks for the reply. I don't know what ITP is, but they didn't mention my platelets being low. Only hemoglobin, iron and Vit. D.
  9. HI, I recently got the blood test drawn to test for celiac and am waiting for the results to come back. Next week I'll have an endo done. I have questions though, about it because I've read different things online. I have been on a somewhat low carb diet for a year or so. I'm not strictly gluten free, but honestly don't eat a lot of gluten except for weekends. Maybe a cheat once in a while during the week. So I guess you could say I eat a "low gluten diet". Now after researching about how celiac disease is diagnosed, I'm concerned I won't have enough gluten in my system for it to show up in the blood work or biopsy. Is that correct, or will it be fine? I keep seeing you have to eat 2-4 pieces of bread (or equivalent) for several weeks prior to a biopsy? Anyone know if that's true? My dr didn't' ask about my diet, or mention that I would have had to be on a gluten diet prior to it, I didn't realize this until reading later.
  10. Thank yo Laura.. I agree on the celiac being the least bad! Other possible causes included stomach or colon cancer... I am praying for it to be celiac - or at least something else!
  11. Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that. Found out later, my iron and vitamin D were also low. Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is what brought me here! I had that done and am awaiting results.The endo is scheduled for next week. so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache. Anyone else have this type of experience prior to diagnosis?