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Hi all,

I found this website a few days ago and am eternally grateful for the answers, help and sense of validation I now feel. I had never connected many of the symptoms I experience to gluten. I too thought I was a hypochondriac at one point. With that said; here's my story and my question.

I had been experiencing symptoms exactly like morning sickness for about two years and, after many pregnancy tests every month, I finally decided to go see a doctor. After being tested for everything under the sun and taking every ct scan available, ruling out lupus, MS, etc. etc. my doctor informed me my blood work showed I was allergic to wheat. Next step, a biopsy with the GI.

The next available appointment was a little more than a month away. I had eaten very little carbohydrates to begin with and with the prospect of having Celiac's Disease, began a gluten free diet (Oops). You see, I was never informed that for the test results to be valid there has to be gluten in your system. The test result came back negative.

I continue a gluten free diet regardless of the test results because my body feels better but my question is this; knowing what I know now, should I reintroduce gluten to my system and re-take the test? Is there an upside to having definitive results even if I have already changed my diet?

Thanks in advance for your help.

Kelly

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I am just curious, what blood tests did you have done that showed you had a wheat allergy? I also went gluten-free before my endoscopy so it came back neg, but had blood work done that indicated celiac. Do you feel better going gluten-free? I maybe wrong, but I think there maybe a difference from celiac and a wheat allergy, but I could be very wrong as I am new here, too.

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It is a reasonably common belief that celiac disease is an allergy to wheat, when it is in fact an autoimmune response where the body attacks itself, not the gluten. The OP may have had allergy testing, but I suspect that she had celiac testing. :)

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Hi Jen,

I am unsure as to the specific blood tests my family doctor conducted. I only know that the results he told me were: I am severly allergic to dust/dust mites and wheat. He told me to go to the GI doctor for the endoscopy. He seemed to think testing for Celiac's was the next logical step. I do feel much better when I am eating a gluten free diet but, who knows that could be attributed to simply eating more healthy.

Kelly

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I see this is a common question as another post addresses this exact issue. I'll lurk on that post :-) Thanks for the help.

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HI Kkenny,

You could go ahead and get endoscopy with biopsies for celiac testing. And get the celiac antibodies first. There isn't a whole lot of benefit to diagnosis for USA'ers right now. But you could be become of part of a statistic, whoop whoop! :) In the future maybe things will change though. Celiac clinical trials are one thing that usually require a biopsy confirmed diagnosis. If you need a diagnosis is reallyhup to each person to decide.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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