Should I Get Tested? Already Sort-of Gluten-free

[elligal]

I've been voluntarily on a low gluten diet for a little over half a year now to help lower the my incidence of headaches and migraines. I still have soy sauce, vitamins with gluten, and don't worry about cross-contamination. I cheat at least once a month.

But now my neurologist thinks it's likely that I am a celiac. He didn't test me because I've been on the gluten-free diet for so long it would just give a false negative.

My other health issues are tendonitis, ADD, anemia, easily bruised, and fatigue.

Should I get tested even though it means I would have to eat gluten again? How long would I have to eat gluten for before the test?

If I am a celiac, do all celiac's have to be super stringent and have gluten-free shampoo and use seperate pots and pans from thier family?

I'm feeling overwhelmed just when I thought I was doing great and finally over most of gluten cravings.

Any advice would really appreciated.

[Lisa]

I've been voluntarily on a low gluten diet for a little over half a year now to help lower the my incidence of headaches and migraines. I still have soy sauce, vitamins with gluten, and don't worry about cross-contamination. I cheat at least once a month.

But now my neurologist thinks it's likely that I am a celiac. He didn't test me because I've been on the gluten-free diet for so long it would just give a false negative.

My other health issues are tendonitis, ADD, anemia, easily bruised, and fatigue.

Should I get tested even though it means I would have to eat gluten again? How long would I have to eat gluten for before the test?

If I am a celiac, do all celiac's have to be super stringent and have gluten-free shampoo and use seperate pots and pans from thier family?

I'm feeling overwhelmed just when I thought I was doing great and finally over most of gluten cravings.

Any advice would really appreciated.

Well I would say that if you are satisfied with your tendinitis, ADD, anemia, bruising and fatigue, I would suggest you continue doing what you are now.

If you would like an anticipated improvement with those symptoms, try to be 100% gluten free for two months and see if it helps.

If you do have Celiac, it is a commitment for life, in order not to develop far more serious , potentially life threatening issues. Many people here have permant pysical and mental damage from undiagnosed Celiac.

I understand that at first is is very overwhelming. But, with education and a little time it gets much better. This site is a wonderful source.

Give it a go and see if you fell better. There are lots of folks here to guide you through your journey.

[elye]

I completely agree...the gluten-free diet is overwhelming at first. Believe me, we ALL felt the same way when starting out. But it really does get much easier, once the huge learning curve begins to descend. One thing that really motivated me was googling "celiac and cancer" and sitting transfixed in front of the computer, taking it all in. These are cancers that can be avoided for celiacs if a gluten-free diet is strictly followed. Avoiding a cancer that had a good chance of coming if I didn't give up gluten. It was a no-brainer. And many of us have not just one, but other food restrictions to incorporate. I am on the diabetes diet as well. So, one food concern? Consider yourself lucky! (I say this in jest--I am not at all belittling your feeling overwhelmed...just give it a good college try, and then give it time) .

[Guest Doll]

I've been voluntarily on a low gluten diet for a little over half a year now to help lower the my incidence of headaches and migraines. I still have soy sauce, vitamins with gluten, and don't worry about cross-contamination. I cheat at least once a month.

But now my neurologist thinks it's likely that I am a celiac. He didn't test me because I've been on the gluten-free diet for so long it would just give a false negative.

My other health issues are tendonitis, ADD, anemia, easily bruised, and fatigue.

Should I get tested even though it means I would have to eat gluten again? How long would I have to eat gluten for before the test?

If I am a celiac, do all celiac's have to be super stringent and have gluten-free shampoo and use seperate pots and pans from thier family?

I'm feeling overwhelmed just when I thought I was doing great and finally over most of gluten cravings.

Any advice would really appreciated.

If you are not on a strict continuous gluten-free diet, most likely you will still test positive if you have Celiac. It's hard to say, as each case is different, but I assume you would. Especially if you have high levels of intestinal damage (even if asymptomatic), your EMA will come back positive. EMA is virtually 100% specific for Celiac. If you have a positive result, your have virtually a 100% chance of having Celiac.

Some people here do not use *any* personal care products with gluten. I personally don't feel the need to avoid gluten in most topical products (unless I'm eating my shampoo!), and I am very sensitive. I have never had a reaction due to topical products. Remember that Celiac is not an allergy, gluten is not absorbed through the skin. Some people do worry though that shampoo residue will get in their mouth if they chew their hair, etc. The choice is yours. My GI specialist laughed and said that he has never met a Celiac who has been glutened from shampoo. I personally think it is a personal choice, but not needed for most people.

I use gluten containing skin care, hair care, makeup, etc. products, but make sure that my toothpaste, lip gloss, mouthwash, and hand soap, etc. are all gluten-free.

I do like to use my own cookware. I do think that you should have brand new gluten-free pots and kitchenware if possible. Most items will come out 100% clean in the dishwasher, but sometimes particles can get stuck in ridges, etc. A new toaster is a MUST. Cross-containation can be hard to avoid if the kitchen is also used for gluten containing food, so you might want to have your own sperate food preparing space. I have gotten sick once or twice from CC at my fiance's place, even though the meal we had was gluten-free (and he knows all about CC). Things like wooden spoons etc. are really hard to clean properly.

If you have Celiac, you need to follow the diet, period. Just like you would take insulin for insulin-dependent diabetes. The diet is NOT that hard to follow despite what some people think, once you get used to it. I found it easy for the first month (because I no longer felt like I was dying), then months 3-6 the worst because I missed certain foods. I still miss those foods, but not as often. It does get better with time.