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Advice On Next Step?
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3 posts in this topic

I had genetic testing and fecal antibody testing done by Enterolabs about 1 1/2 years ago after suffering from GI type problems all my life.  I was a healthy weight but had chronic constipation, bloating, fatigue, muscle aches, migraines, among other things, so I decided to get tested.   My results were as follows:

 

Fecal Anti-gliadin IgA    12 Units   (Normal Range is less than 10 Units)

 

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1    0201   

HLA-DQB1 Molecular analysis, Allele 2    0602   

Serologic equivalent: HLA-DQ   2,1  (Subtype 2,6)

 

Interpretation Of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302)

 

I never fully understood the results but went off gluten mostly for the last 1 1/2 years, telling myself that I am gluten sensitive, but not celiac.  In January of this year, I was diagnosed with hypothyroidism and decided that I needed to take the gluten issues more seriously.  I think I have been avoiding a celiac diagnosis because life is much easier that way.  I don't eat gluten, but I don't worry about cross-contamination and occasionally cheat by doing things like eating icing off a cake with a few cake crumbs on it.

 

Now, I am thinking that I need to do a gluten challenge and get blood work done so that I can't ignore what I need to do if I am indeed celiac.  I don't currently have a gastroenterologist and would like to get the testing done myself if possible.  We have a local lab service that offers the following tests on a walk-in basis.  

 

CELIAC DISEASE PANEL

 

TEST COMPONENTS:

The Celiac Disease Panel contains the following tests to measure autoantibodies that identify Celiac Disease:

  1. Anti-TTG Antibodies, IGA  -  Tissue Transglutaminase IgA
  2. Total IGA
  3. Anti-DGP, IGA  -  Gliadin (Deamidated) Antibody IgA

 

Does it sound like this is a good option for me?  Are these tests sufficient?  If I test positive, I will then go to a doctor to discuss the results, I was just hoping to cut out the middle step.  I appreciate any feedback.

 

 

 

 

 

 

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You are more likely to get a negative diagnosis anyway because you have been off of gluten for so long, unless you go back on gluten for a long time, even then, no guarantees at all, because damage takes a long time to create, so that still leaves you with the conundrum of what will it take to get you to stick with a gluten free diet. 

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Ditto Takala. You will need to eat gluten in moderate amounts (1-4 slices bread a day) for about 6 weeks (times vary) together a fairly accurate test. The DGP IgA or IgG will probably be the best test for you as they tend to test positive earlier into the damage than the ttg or EMA tests would (as I understand it). The older AGA tests can show up sooner too - the blood test is more medically accepted than the stool test.

I think it is wise of you to reassess how strict your gluten-free diet is, after testing is complete, since a cheat like icing can set you back a few weeks and keep you in a fairly unhealthy state if you do it once or twice a month. Even if you are"just" gluten sensitive, it is thought that eating gluten can cause inflammation that could exacerbate other conditions like hashi's... As I understand it anyways. :)

Best wishes to you and welcome to the board.

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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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