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Hello to everyone!

I have been hanging around here and reading posts for quite a few weeks. A friend of mine was diagnosed with celiac disease and I thought it might be my problem.

I have had diarrhea for my whole life. I was told years ago it was IBS and to learn to live with it. As I have gotten older I have found it to be a real problem.

I went to my primary care who told me I wasn't sick enough to have celiac disease and I was too heavy. She sent me to an allergist,who did skin testing for foods and the blood tests for celiac disease, The skin test showed positive for wheat, fish, peanuts and eggs. The celiac disease blood test came back normal. He told me to avoid those foods. Then he ran allergy bloodwork and they came back negative. I have omitted those foods from my diet and I feel better. But now they say I don't have any allergies according to the blood work. I guess the big old welts from the skin tests don't count. So according to the Drs. I don't have allergies or celiac disease.

I decided that I would stick to the diet for six weeks and see if I keep improving.If so ,that is how I will eat.

Has anyone else had all the negative tests,but felt better gluten free?Am I crazy?



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You are not crazy. I tested negative on the blood tests, too. See the blood test measures the level of antibodies to gliadin (another word for gluten protein) in your blood. The antibodies are produced in your intestine, but only start to leak into your bloodstream when there is a lot of damage to your intestine. Since the damage in the intestines often starts out as patchy and the lining heals quite quickly, it can take quite a long time for some people to produce a positve bloodtest result.

You could ask a GI doctor for a biopsy to see if there is damage, but even the biopsy has some flaws. You already know that you feel better off wheat, so I would say go with that, but understand that it is much harder to get positive test results after being on a gluten free diet.

Welcome to the message board. :)

God bless,



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My blood test wasn't negative, but it wasn't positive either. I determined by celiac status by how I did on the gluten-free diet. I felt better going gluten-free, and can tell when I get something that's contaminated, so I stay gluten-free.


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My doctor diagnosed Celiac Sprue from the diet changes. You have to have almost massive amounts of damage for the tests to show positive. If you feel better on the gluten-free diet, then stick with it. A long, healthy life is very much worth not eating wheat!


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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
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