Looking For Interpretation: Gluten Sensitive Enterolab Results?

[screech]

I am having problems figuring out what I should do based on some symptoms and my lab results and I am looking here for some help. I have been told by my doctor that I should not eat foods that contain gluten. This was told to me after some of my symptoms and some lab tests determined that I was sensitive to gluten. But as I looked into the lab results, things were not as black-and-white as I had hoped.

First, I went to the doctor because of excessive fatigue. I think I slept between 14-18 hours a day for almost an entire week, which is very unusual and was a sudden change to my normal sleeping habits and happened after I had difficulty sleeping for about a week. There were some other symptoms that appear to be unrelated (red discoloration on face, dryness on hands and feet, constipation...) but my doctor suggested that I take a stool test from enterolab to test for a sensitivity to gluten.

The results came back as "Fecal Anti-gliadin IgA: 6 Units" which is "below the upper limit of normal". The total serum IgA in a blood sample was also very low which may mean that perhaps my boby doesn't make any of that antibody anyways -- a "false negative" scenario.

So I did the genetic test, also through Enterolab. This was the result:

HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

I looked up the serologic subtype information (Subtype 7.5) and found things that told me that DQ7.5 does not have to worry about gluten in the diet, but is that the *0505 phenotype or the *0501 phenotype? And what is the difference? I don't have any of the DQ2 or DQ8 stuff, but I think I read that *0501 is half of the DQ2.5, so am I 1/2 gluten sensitive, and what would that mean? I thought the genetic test would give me a "yes" or "no" answer, but it seems like everything is still cloudy to me.

Now I don't feel that I have all of the symptoms of a gluten sensitivity, and I definitely don't think I have any major life-altering symptoms ... and looking at the list of symptoms, there sure are a lot of them. And the fact that some people have different symptoms than others, and that gluten sensitivity can cause symptoms that are similar to other problems, it all makes it hard to understand.

So can anyone send some information to me about what my whole genetic test thing means? I'm not quite sure what I should be doing. Thank you all in advance for any help and information you can give to me.

[Evie4]

[Penny-M]

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

I looked up the serologic subtype information (Subtype 7.5) and found things that told me that DQ7.5 does not have to worry about gluten in the diet, but is that the *0505 phenotype or the *0501 phenotype? And what is the difference? I don't have any of the DQ2 or DQ8 stuff, but I think I read that *0501 is half of the DQ2.5, so am I 1/2 gluten sensitive, and what would that mean? I thought the genetic test would give me a "yes" or "no" answer, but it seems like everything is still cloudy to me.

I'll take a stab at commenting on the gene interpretation. I'm just trying to sort mine out as well. I am a DQ7.5, but my understanding is that this is due to the *05 being an alpha unit (of DQ2). I found out the *05 through testing through Kimball that tested for the alpha units for DQ2 and DQ8.

So, DQ7 can possess the alpha *05 of DQ2, but without getting tested for it specifically, I don't know how you would know. I have found out my risk is elevated for celiac disease with 1/2 the DQ2 and DQ7.5.

The beta unit *05 on the DQ5 is different than the alpha unit *05 on the DQ2. (Not sure if you were interpreting them to be the same). I think you would read yours as DQ7,DQ5 (not DQ 7.5).

Hopefully one of the posters up on celiac disease genes will give you a more definitive answer on the gene thing.

I don't know what all that means but I have to ask, where you eating Gluten prior to the test or had you stopped? If you had stopped that will effect the outcome of the test. You can test negative even though you are postive or vise versa. Secondly, not all test are conclusive to if you are or aren't celiac, the important thing is to see how you feel after being Gluten free for a week or so. I would also advise that you try being giving your digestive system a break by not eating any form of pasta, or processed foods that have gluten in them. Keep in mind that if your intestines are damaged(inflammed) from years of Gluten that dairy, and some fresh fruits and vegetables may bother you as well. If you have not had an endoscopy done then it might be your best shot at getting a difinite answer if your intestines have been damaged.

My father is the carrier of Celiac in my family and I have 4 other siblings and I am the only one with symptoms. It took me years to find out what was wrong. So now I am telling people what I know and what has helped me since being gluten-free.

Hope it helps

Keep us posted.

[ang1e0251]

It wouldn't matter if you are eating gluten for the gene test. I understand the stool test can be used even up to a year of gluten-free eating.

[screech]

It wouldn't matter if you are eating gluten for the gene test. I understand the stool test can be used even up to a year of gluten-free eating.

My wife was switching to a gluten-free diet for about a month before I took the test. We would have gluten-free dinners but I was definitely not strict about it so I guess you can call it a gluten-reduced diet. But I know the stool test can produce a false negative, especially since I had very little IgA in my blood test which I think means that my body does not produce much/any so the stool test would be considered inconclusive anyway.

The gene test, though, is what I am most interested in. I have found things that describe my results as not being gluten sensitive, but also I have heard that gluten does cause problems with the genetics that I have. I am relatively young (32) and don't have years of destruction to my intestines or unexplainable health problems. I also don't have any major symptoms or have noticed any major changes since eating gluten-free for the last few weeks. I was hoping that the gene test would give me a simple "yes" or "no" answer -- you either have the gene or not -- but that doesn't seem to be the case (or I just can't get a straight answer either way). I'm really wondering what I should be doing ... should I be concerned or not?

[ang1e0251]

I think if your symptoms persist, the ones you went to the dr for, then you should give the gluten-free trial of about 3 months. Only you really must be strict with it, decide if your symptoms have abated. Then do a challenge where you go back to eating gluten. Compare how you feel on and off.

I know you wanted some definative answer but with GI, it's just kind of wishy washy right now. No real test and results that seem to contradict themselves. The test run of the diet shoud tell you.

[nora-n]

Anyone with DQ7 from enterolab (no other labs will tell you if you are DQ7 anyway) has a good chance of having half the DQ2 gene, the 05 alpha chain!

Check the ccharts at the wikipedia page for HLA DQ.

By the way, the DQ7 is not 7,5 (like wikipedia lists the genes), but it just means separate DQ7 and DQ5 here. You have two genes and one is DQ7 (and maybe half a DQ2) and the other DQ5.

If you are DQ7,5 (but enterolab does not test for that, Kimball does) then you have half a celiac gene, and you have almost as great a risk for celiac as the two main celiac genes.

SOme are DQ2,2 plus DQ7, and Enterolab does not tell them they probably are trans DQ2....check wikipedia.