What Would You Do?

[lilu]

So, hubby's test results came back - genetically he is DQ2/DQ2 (which increases his risk to 1 in 3 or 4 instead of 1:133), but his antibodies are well within normal range. Still, he is very symptomatic. If these were your results, what would you do? Dumb question, I know, but ...

[sa1937]

NOT a dumb question!!!

Does he plan to go for an endoscopy/biopsy? If not, personally I'd go on a strict gluten-free diet. By that I mean shop the outer rim of the store and stick with whole foods (fresh fruit, veggies, meats, etc.) It's a lot easier and much better than trying to replace gluteny foods with their gluten-free counterparts. You may just get your answer.

Also read, read and read. Many messages on the forum refer to cross contamination issues and questions others have had starting the gluten-free diet. And ask whatever questions you may have.

[Lisa]

So, hubby's test results came back - genetically he is DQ2/DQ2 (which increases his risk to 1 in 3 or 4 instead of 1:133), but his antibodies are well within normal range. Still, he is very symptomatic. If these were your results, what would you do? Dumb question, I know, but ...

You are correct (if I remember my stats correctly). He carries the genes which would indicate that he has a 30% change of developing Celiac Disease. On the flip side, 70% of the general population carry the same genetic link, do not develop Celiac.

Along with his genetic testing, coupled with his symptoms, I would consider it either Celiac Disease or Non-Celiac Gluten Sensitivity (NCGS). Either way, the remedy is the same.

Unless your husband desires further testing, I would suggest to go totally gluten free, and feel better. If he wants additional information, continue consumming gluten and continue with the antibody tests.

[ravenwoodglass]

Since false negatives are all too common when you are done with all testing do give the diet a good strict try. He may find a great deal of relief once he is gluten free despite the negative blood tests.

[sahm-i-am]

My daughters were tested after we discovered I had celiac disease. One daughter was negative on all counts while

the other had the genes but no antibodies. She was having symptoms however. She decided to go gluten free

without biopsy (she was only 10) and has felt great ever since! It was a no-brainer for her. I hope your husband

can make the decision as easy as she did and stick with it.

[cait]

I also tested negative but have positive genes, family history, and symptoms. I question myself a lot because of the negative tests, but I am happier in so many ways without gluten.

[lilu]

Thanks to everyone for your responses.

Cait - do you maintain 100% gluten-free? How long have you been gluten-free? I think I'm hust worried that w/o a diagnosis he won't take the diet seriously enough... I know, his body, his choices, his responsibility... Just seems it would be harder to hold onto over the years without a supporting diagnosis...

[Takala]

It has to be his decision and not yours to go gluten free, altho you can provide a supporting role. If he wants to continue to eat gluten if it makes him sick, then there is not much you can do about it, and there are plenty of people who have posted here with (partial) positive test results I've seen making entire sets of rationalizations as to why they still don't think they have a gluten problem, and it has to be something else, because the medical professional won't give an "official diagnosis" - I've even seen a few with the diagnosis fall off the wagon, so to speak, and then spend months and much money chasing down other possible reasons for being sick.

I have no positive test results (if you ignore the brain scan showing damage, which the neuro tried to do, and the bone scans, which several of them tried to do) yet I do not eat gluten because it makes me ill, and I'd rather not be sick. I haven't bothered with the gene test yet ( around 8 years now ) because I know intrinsically I have a problem with triticum family proteins in my diet. While it would be nice to know, I still don't live in a country where this information wouldn't be used to financially discriminate against me, so I'm in no hurry.

[cait]

Thanks to everyone for your responses.

Cait - do you maintain 100% gluten-free? How long have you been gluten-free? I think I'm hust worried that w/o a diagnosis he won't take the diet seriously enough... I know, his body, his choices, his responsibility... Just seems it would be harder to hold onto over the years without a supporting diagnosis...

I've only been gluten-free for 2 months, so I'm pretty new to it, but yes, I'm strict about it. The problem I have with the lack of "official" diagnosis is that I question myself a lot. I wonder sometimes if I've made this up or am blaming gluten for something unrelated. Or I have trouble saying, "No, really, I can't eat that if you chop it on that wooden cutting board," because I don't have the confidence that an official diagnosis would give me. I know I need to get over that, and at some point I will, I hope. That said, when I'm careful, I have stretches of days when I feel better than I have in a long time. And then when something goes wrong, or when I'm visiting family members who don't understand and I run into a lot of cross contamination (as I have for the last two weeks while staying with my mom), I feel like crap. The difference in how I feel keeps me motivated to stick to it, and I have to be pretty careful to get to the place where I'm feeling good, so there's not really any room for cheating.