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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 figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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