• Ads by Google:

    Get email alerts Celiac.com E-Newsletter

    Ads by Google:

       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Need Help

4 posts in this topic

Recommended Posts

justmel74    0

Ok. Here's my story.

In March, I started having some horrible, gut wrenching pain below my ribs, with bloating, diarrhea, nausia, you name it. I figured it was a virus, until the symptoms didnt go away. So, I went to my family doctor. She had me tested for Celiac Sprue. One of the antibodies came up at a 40 (30 or below being a moderate reaction?) or something like that. I'm really not sure. And put me on a gluten-free diet, then sent me to the Gastroenterologist.

I was on the gluten-free diet for 4 weeks, started to feel better when the Gastroenterologist said that this blood test that my family doctor used was not difinitive, and he wanted to run more tests. So, I had to go back on a wheat filled diet. He took more blood, and did a biopsy. The biopsy came back normal. The other blood work, normal. Now, by this week, because I was told to go back to eating a regular diet, I'm having soooo much pain again, it is almost unbearable. And the crazy thing is, I havent really been eating a whole lot of gluten/wheat products. I just went out to dinner twice, ordered things that would be less contaminated, so to speak, and at home continued to eat gluten-free because it overall makes me feel better.

So I called the Gastroenterologist and asked what's up with my results - Did I not eat enough wheat? They said that the blood work was sent to a very special lab, and these particular test was not dependent on gluten in my system. And then she said "Celiac Disease is just not in my mechanisms". What does that mean? What test(s) could they have possibly done? And why am I still feeling so miserable? I'm wondering if I'm allergic to wheat. Can a wheat allergy mock celiac disease symptoms? I mean, I not only felt better stomach wise on a gluten-free diet, but I had more energy, less fatigue, less achiness, less mood swings, less everything! But now I wonder if it was all in my head.

I probably should add, I have tons of other allergies that plague my life. I take two antihistimines: allegra and zyrtec, a steriod nose spray: rhinocort, another nose spray: astelin, advair and albuterol for asthma, and I get two allergy injections once a week (one in each arm). I'm frustrated because my Gastroenterologist is so overbooked with patients, I'm going 4 weeks between appointments, and I just want to feel better! Where should I go from here, what questions should I be asking, should I talk to my allergist instead of the Gastroenterologist. I just dont know anymore.

Thanks for your advice!


Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

plantime    12


I'm sorry you are not feeling well, and having such a hard time with your doctor. However, you can completely do away with the stress of dealing with the doctor if you want to. You have learned from the diet itself what makes you sick. I have never heard of a Celiac blood test that does not rely on gluten consumption. Enterolab's stool panel can be done while glutenfree, but not the bloodwork. A biopsy will only come back positive when there is significant damage to the villi. It is very possible that you are in the early stages of celiac, and the damage just has not happened yet. 4 weeks glutenfree could very well have been enough to mess up the bloodwork results. You could have a wheat allergy, yes, but the treatment is the same: a glutenfree diet for the rest of your life. You do not need a doctor's note or diagnosis for that. It is nice to have confirmation from a doctor, but it is not required. Many celiacs use the improvement on the diet as confirmation enough. Feel free to come back and ask us questions, we will do our best to help!

Share this post

Link to post
Share on other sites
LisaS    0


And then she said "Celiac Disease is just not in my mechanisms".


This sounds like your doctor tested you for the HLA-DQ2 gene which is connected with celiac. Did she say anything about gene testing?

You can still be gluten sensitive if you do not have the HLA-DQ2 gene.

Lisa S

Share this post

Link to post
Share on other sites
justmel74    0

Well, I had food testing done for allergies because I have a ton of other non-food allergies. And, I had a mild reaction to wheat and dairy. So, I have taken both out of my diet and am feeling tons better. My eczema has cleared up as well. The doctor said I could try re-introducting the dairy back into my diet slowly in about 6 months, and same with the wheat. I'm nervous about the wheat though, as I only got negative tests for the celiac disease. So, I continue to eat gluten-free anyway, because I feel better.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Popcorn, wine, as well as coffee are my favorite things.  Have you identified what is left to enjoy?  
    • I think you need to take a little time to learn about DH and celiac disease.  Celiac and DH are technically autoimmune disorders.  This is about DH: https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ Learning about celiac disease (overview): https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/ Testing for celiac disease via blood test: https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.   If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything.  So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering.  Then you can google to see if he/she is ordering the right things.  Get a copy of the results.  Get a copy of the costs/receipt if you are paying out of pocket.  Put your requests in writing.   I think some labs and doctors use the term for gluten allergy incorrectly.  1.  There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure).  There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate.   2.  There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA).  3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur.  This diagnosis is reached when you have failed the first two as there are n tests for it.   Read through the DH section of this forum for symptoms and tips.   I hope this helps.   Finally, if you really suspect DH, you  can always go gluten free.  Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.  
    • I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms.  As we know, no symptoms does not mean no damage being done.   I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on.  I never did get the intestinal symptoms others get.  This for me is the hardest part of having Celiac's, figuring out what did it.  Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse.   It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care. 
    • If you get accidentally glutened, how do you keep doing it for several weeks? Or do you mean you get glutened once and several weeks later you react? 
    • I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive.  All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given.  My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing.  Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth.  I have not developed any more AI diseases than the 4 I already have and I call that a big win. I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing.  I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it.  If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back.  Repeat endoscopy's are really for those still having problems.
  • Upcoming Events