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I Need Help
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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!

Melanie

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Melanie,

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!

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Melanie,

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

Melanie,

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

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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.

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