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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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