• 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 nekome

  • Rank
    New Community Member

Profile Information

  • Gender
  1. Yes, my GI said based on the blood tests he ran, no Celiac (and this was after a gluten challenge that ran from January to April). I don't know if this helps but..
  2. Hi everyone! So I met with my GI yesterday. He said aside from the slight erosion he saw (which now I have to take Prilosec every day for that) and a small nodule (Pancreatic heterotopia which he said is congenital and nothing to worry about) that there is no evidence of Celiac. He said that even with my Celiac gene, that I don't have to follow up on that. (I thought people would get screened on a yearly basis or something like that thus why I asked about checking on it) No H. Pylori so that's also good. I definitely have to watch the fructose due to the fructose malabsorption but my GI is kinda worried about my diet becoming overly restricted since I told him I'm choosing to eliminate gluten sources as well. (My vitamin levels have been consistently on the lower side). He mentioned I might want to look into the FODMAPS diet and then said I could maybe try to eat gluten again from that? But, I feel that I'm better off the gluten. I ate some gluten last week on purpose to see what would happen and my eczema on my foot itched intensely shortly after. That night I couldn't sleep-- it itched so bad. Getting that checked out by a derm. in July but at this point I guess it can't be dermatitis herpetiformis because of the negative Celiac blood tests and negative biopsy at this point.. All my symptoms still persist so.. I have to do stool samples and a colonoscopy to rule out parasites. Fun, fun. So! After all, no Celiac disease. Kinda surprised.. going into all this, especially based on the Entero Lab results considering how out of range I was (Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units). I'm not knocking Entero or saying I regret it. I still think it was helpful just confused. Ah well, back the drawing board.
  3. Hi taynichaf, I won't have the full report until next Tuesday, but my GI told me he found erosion and a small nodule. I'm still not sure what any of it means so I'll just have to sit tight until then..
  4. I can't tell you enough how fortunate I feel to be getting treatment there! Yes, I was told that my blood tests turned up negative for Celiac but there's inflammation (IgA levels are above ref. range) and my vitamin levels are on the low side (deficient in Vitamin D). But thank you! I will be posting on the results!
  5. Hi everyone! I posted back in January about looking into getting a second opinion. My problems with gluten really surfaced late last summer and I saw a gastroenterologist who did an endoscopy on me last December-- he said everything was fine and I wasn't convinced so I decided to go to another doctor this time making absolutely sure they specialized in Celiac (and where better than the Columbia Celiac Center?). Ever since January, I've been on a gluten challenge though I've been bad about being consistent in poisoning myself and also bad with getting minimum amounts. I guess most of the time my body just goes on autopilot and wants to eat gluten free. I worry I may not have done the challenge correctly.. but I wouldn't do this again. It's been a long, long journey since I started and regardless of what the results are tomorrow I learned a lot about myself. It has been confirmed that I have the DQ8 gene. A hydrogen breath test came out positive for fructose intolerance. (I was so worried about gluten, I didn't even think about anything else!) I will be cutting out gluten for sure. I went through all this for my family so that perhaps I could help someone suffering from digestive issues. I just got engaged so this experience is all the more poignant to me. Even if I wish it didn't take me being sick for a while, I am thankful for the changes the process has brought about. My desire to build my health has never been stronger. After a lifetime of being in bad shape both physically and mentally, I feel like freedom is more in my grasp than I ever thought possible.
  6. Thank you mushroom and ciamarie, I really appreciate that you guys took the time to respond to my post. It's comforting to know that there's people I can turn to for help with this. I've been gluten free since the biopsy so no rashes at the moment though I have just recently started a gluten challenge and I'm going to eat at least two slices of wheat bread each day for at least 3 months this time. I already made an appointment with the Celiac center for testing.. If it gets unbearable then I can try to bump up my appointment. I'll keep you updated!
  7. Hi everyone, I've been reading these forums for some time now and after going through a stressful year of trying to determine if I have celiac or not. A little bit about myself-- I've had eczema (in the form of what looks like bubbles under the skin that are extremely itchy on hands and feet typically), randomly swelling joints (hands, feet, knees and lasts for days making it quite painful to walk/move around), and hormonal imbalances which caused irregular periods for as long as I can remember. Since last year, I've been experiencing constipation, diarrhea, feeling really fatigued (regardless of sleep and trying to eat a nutrient rich diet along with taking multi vitamins), moodiness (almost as if it were depression) on a nearly daily basis plus the eczema suddenly started to spread over other parts of my body and the joint swelling seemed more frequent. Top that with my hair rapidly thinning no matter what I tried, and needless to say I was extremely worried. I was exercising regularly, eating healthily (mostly eating lean protein, lots of vegetables and fruits, and whole grains), and drinking 3 liters of water a day yet the symptoms were still there. I went ahead and ordered an Entero Lab test in August and here are the results: Gluten/Antigenic Food Sensitivity Stool/Gene Panel Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units) Fecal Anti-casein (cow’s milk) IgA 46 Units (Normal Range is less than 10 Units) Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units) Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units) HLA-DQB1 Molecular analysis, Allele 1 0302 HLA-DQB1 Molecular analysis, Allele 2 0502 Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5) As of the middle of August when I got the results, I completely stopped eating gluten and acted as if I had Celiac. I found that my symptoms improved but I still wanted to get an official diagnosis not just for myself but for my family. I went to my PCP in November and he ran a blood test panel telling me that I had no antibodies to gluten, only very mildly so for dairy and eggs. He suggested I stay off dairy and eggs for a week and see if my condition improved. But in terms of any kind of gluten intolerance or Celiac, he said I didn't have either. So, I started eating gluten again for that week. Towards the end of it, I woke up with my body covered in very itchy rashes that lasted the entire weekend. (This on top of my usual symptoms) I spoke to my PCP and asked him to look at the Entero results just in case and then he referred me to a GI that he said specialized in Celiac. After meeting with the GI, he told me that about a week before the biopsy, I should start eating gluten so I basically tried to OD on it for that week. I finally had a biopsy done in early December after being gluten free from the middle of August to November, then on gluten for a week after the initial blood test, then back off gluten until the week before the biopsy, and since the biopsy I'm gluten free again. The GI got back to me and said that my small intestine "looks fine, very good in fact" and that I have intestinal metaplasia-- there's just inflammation in my stomach (didn't say to what degree). Confusing since I don't eat spicy foods, I barely drink alcohol, no coffee (though I do drink tea that has caffeine about 2 times a week), and don't really eat too much acidic foods.Though he did say that I do have a gluten sensitivity as reported by the Entero Lab results and I don't necessarily have to avoid gluten but if it makes me feel better, then I should stay off it. I'm thinking of getting a second opinion at the Celiac Disease Center in NYC. Do you think given my case there may have been a possibility that I got false negatives? I did eat gluten those two weeks and experienced symptoms but apparently there was no damage? Should I try to gluten challenge myself for longer and then try to get a diagnosis again? Thanks for reading, I know it was pretty lengthy. This whole experience has just been very stressful and I don't know anyone that I can speak to that understands gluten intolerance or Celiac disease.