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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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