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Symptoms And Dq2 Test Results Is It Celiac?

DQ2

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DQ2 Newbie
DQ2
Posted

Hi,

 

I need some help figuring out what's going on.  We already have ample amounts of autoimmune disease in my family.  I have RA, 2 of my kids have type 1 diabetes, vitiligo.

For past 2 years I suffer from gastro issues such as dry heaving every day, diarrhea 4 x daily, etc. and my doc sent me to see gastro doc.  He did genetic test and it shows the DQ2 gene and the DQ2.5 gene and celiac risk HIGH.  But he still didn't say I have Celiac.  He just shrugged his shoulders and said that if I feel better, I should avoid gluten.  Since going gluten free for past 6 weeks, the gastro issues have all stopped.  no more dry heaves, diarrhea, etc.  However, every time I mistakenly ingest gluten, I get return of gastro symptoms. 

 

My question is:  IS this Celiac?  How can I get it determined without going back on gluten and doing a biopsy?  I do not want to do that procedure.

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SMRI Collaborator
SMRI
Posted

Did they do any of the actual Celiac tests for TT IgA, etc.?  It would have been helpful to have those before going gluten-free.  With only being 6 weeks off gluten, I would think you may have some results if you did go back on gluten even for a week or so.  It would be worth knowing.  Gene testing alone is just not reliable enough, but then again, do you need an actual diagnosis to stop eating gluten?

nvsmom Community Regular
nvsmom
Posted

It is a shame if he did not run the celiac tests at the same time as the genetic tests. Those genetic tests only tell you if you are in the 30% of the population that is more likely to get celiac disease - since you already have RA, you are already at increased risk of celiac disease.  :(  The celiac blood tests are tTG IgA, tTG IgG, DGP IgA, DGP IgG, and EMA IgA, but you need to be consuming gluten in the 8-12 weeks prior to testing for them to be accurate.  You could try testing now but there is a good chance that you would get false negatives if you do have celiac disease.

 

The biopsy only requires 2-4 weeks of gluten if you choose to try that.

 

If you don't wish to test, and you are willing to stay very strictly gluten-free, then I wouldn't worry about it.  Just make sure that you are "celiac strict" and not "fad diet" strict.  Check all meds, shampoos, seasonings, for gluten.  Get rid of the old toaster and anything that may be contaminated like mesh sieves.  Consider getting rid of some baking supplies if there is any chance that it could be contaminated (like a wheat flour coated measuring cup used in the sugar).

 

Welcome to the board and best wishes.  :)

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    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

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    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

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    • RMJ
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      By RMJ · Posted

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