Got My Results Back!

[Nancym]

I got the testing done with enterolab.com. I had been gluten free for nearly 3 months. All my cramping and weird diarrhea went away my second day gluten free. That kind of confirmed my suspicion but I figured I'd get the testing done to see for sure. I have the antigens and a small bit of antigens to casein too. :\

But I can't quite figure out what the DNA testing is telling me other than, "Yup, I have the gene(s?)".

Is this one gene or two? Is it possible to tell if I have one copy or two of the bad boys?

HLA-DQ Gene Molecular analysis: HLA-DQB1*0302, 0501

I'm feeling a bit of relief and a bit of angst right now. Relief because my family thought I was being weird. Angst because I hope I'm not too late in getting this diagnosed. I've had some weird symptoms in the abdominal area and I'm hoping I don't have cancer or something awful.

[nettiebeads]

I got the testing done with enterolab.com. I had been gluten free for nearly 3 months. All my cramping and weird diarrhea went away my second day gluten free. That kind of confirmed my suspicion but I figured I'd get the testing done to see for sure. I have the antigens and a small bit of antigens to casein too. :\

But I can't quite figure out what the DNA testing is telling me other than, "Yup, I have the gene(s?)".

Is this one gene or two? Is it possible to tell if I have one copy or two of the bad boys?

HLA-DQ Gene Molecular analysis: HLA-DQB1*0302, 0501

I'm feeling a bit of relief and a bit of angst right now. Relief because my family thought I was being weird. Angst because I hope I'm not too late in getting this diagnosed. I've had some weird symptoms in the abdominal area and I'm hoping I don't have cancer or something awful.

Don't worry about the weird feelings. It takes quite awhile for all of the damage to be healed. Have you laid off of the dairy? If not, you might try that for awhile. YOu didn't state how long you had been sick before going gluten-free. The chances of cancer or other awful things rises the longer your body is reacting to gluten, and it takes a long time of accumulated damage before something bad cand take hold. As soon as you go gluten-free, the body starts healing itself, as you no doubt learned since the D stopped. Just keep on going gluten-free and regaining your health!

[jenvan]

Nancym--

Weird abdominal issues are the name of the game for Celiacs...but you can keep up with a GI doc and they can rule cancer etc out if you are really concerned about it. And if symptoms persist without improvement I would go to a doctor to be on the safe side. What are your symptoms exactly? Some of mine changed initally after going gluten-free before they improved.

[Nancym]

Nancym--

Weird abdominal issues are the name of the game for Celiacs...but you can keep up with a GI doc and they can rule cancer etc out if you are really concerned about it. And if symptoms persist without improvement I would go to a doctor to be on the safe side. What are your symptoms exactly? Some of mine changed initally after going gluten-free before they improved.

Well, I had a feeling like I had to go potty even though I didn't. Felt like a kind of pressure in my lower abdomen, someone poking my intestines. Then I got this horrible pain in whatever muscle it is that you use to urinate or defecate. It hurt like hell to sit on the toilet, it even hurt into my back. And finally I started getting bad menstrual cramps right in the middle of my cycle. This all kind of came on at once so it was hard to tell where one pain ended and the other one started!

I'm definitely going to see the doctor and try to get checked out for Ovarian issues and colon ones too. I have to decide if I want to tell my doctor about the Enterolab testing or not. I suppose I will.

But I've had some really weird muscle pains, I'm hoping they'll go away eventually with the gluten free diet. Once it was actually hurting to breathe, right in the center of my chest!

Anyone know about the DNA test? I'm curious, is that one gene and one copy of it has the Celiac markers and the other copy of it has the Gluten Intolerance markers? Or is that two different genes? I was curious whether or not this shows that I was handed down something from each parent.

Oh yes, I'm rather sad about having to give up the casein too! That made up a huge part of my diet. *sigh*

[DonnaD]

Hi Nancy

In our family we have C rather than D but we all have lower right sided dull stitch like pain when not wheat/gluten free and terrible pain, like labour pains when going to the loo. Sometimes I used to think I would pass out. I put linseeds in my muslie now and don't have a problem gluten-free.

I did tell my new doctor about Enterolab she was quite supportive, I took with me articles regarding my particular gene type although I think the fact that my Daughter is biopsy confirmed made a difference.

I was also a bit unsure about the gene thing, I have HLA-DQB1*0501, 501 so I e-mailed Phyllis at Entrolab, this was her reply:

Dear Donna,

I'm sure you have already read the other email I sent clarifying that you did, in fact, receive one 0501 gene from each of your parents. This means you are DQ1 subtype 5 for both genes.

Your daughter with celiac disease will definitely have received an 0501 gene from you.

If she has one of the main Celiac genes, she will have inherited it from her father.

I hope this helps, and I pray that a gluten-free/casein-free diet will have you feeling better very soon.

Most sincerely,

Phyllis Zermeno, RN, BSN

Clinical Manager, EnteroLab

I have researched HLA-DQB1*0501 and although it is not one of the 2 main genes it seems to be linked to neurological problems, brain fog, fibro etc not so much the'classic' coeliac problems.

I hope this is of some help, I am actually enjoying my research into this, I have been feeling a bit 'brain dead' as I am no longer able to work.

[Nancym]

I'm glad you found info on 0501! That is one of my gene copies. I definitely think it was active in me. I had the brain fog thing going on too. I thought it was due to my thyroid medication not working well, but now I'm thinking it is otherwise! I'm cutting back on my T3 thyroid meds and not feeling that brain fog. I think I might be able to stop taking it altogether eventually.

It has been really interesting looking for information on my two gene copies, I got 0302 as well as 0501. I found the following things out:

0302 predisposes one towards Type 1 diabetes and Celiac disease, but it protects you against severe malaria. It also makes you more suseptible to a form of cervical cancer. (Bummer that).

I think I found that 0501 protects you from narcolepsy. So there we have something going for us!

Well today is the first day of giving up milk products as I'm also Casein intolerant. Boy, what a double whammy!

But I also do have some weight to lose and I have decided I want to change my eating habits so I eat more for survival rather than entertainment. I tend to eat too much when I'm entertaining my tastebuds. So perhaps all this is really a blessing in disguise.