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So Frustrated! What Would You Do?

Ox on the Roof

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plumbago Experienced
plumbago
Posted

If you do decide to one day do another endoscopy to find out whether or not you have Celiac disease, of course you probably know that if you are not eating gluten, then in all likelihood you will not get an accurate reading.

Also, make sure your multivitamin does not contain gluten.

Good luck.

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T.H. Community Regular
T.H.
Posted

Also, as something to help stay gluten free? You could put the kids gluten free, too.

Actually, if you end up positive, you should probably look into getting them tested for celiac disease, and considering your own experience, putting them on a gluten-free diet for a bit if the test is negative and then have a gluten challenge after a few months.

Reason I say this is that of relative 1 degree separated from a celiac, 1 in 22 are celiac as well. When I was diagnosed, we tested my family, and one kid was positive - no symptoms I knew of - and one was negative but symptoms improved significantly on a gluten-free diet, so now the whole house is gluten-free. :-)

Also, if you have any girls, they should probably get tested before trying to get pregnant when they are older, too, just in case, as many celiacs are now asymptomatic, but it can cause miscarriages if undiagnosed during pregnancy. :-(

SGWhiskers Collaborator
SGWhiskers
Posted

I love all the advice you have gotten from everyone here. I'll second or third the gluten free kids idea. I had a hard time recovering until hubby went gluten free. My nieces get me sick a few times a year from hugs, cheek to cheek kisses, and playing. I suspect it is the gluten fingers run through the hair and the occassional accidental hand bumping my mouth that gets me. Maybe at least get them gluten light. Gluten free for most of the day, but maybe a snack right before bath time if you feel they must have Oreo's to not feel deprived.

My second comment is about a friend of mine who developed a mystery illness a year or so ago. I knew her family had a history of autoimmune diseases and I begged her to get celiac testing. It was negative, but she was eventually diagnosed with Rhumatoid Arthritis although I don't know if it was via symptoms or blood testing. Her doctor is a bit unusual in that he skips a lot of testing and goes straight to lifestyle changes that help the majority of his patients. He is published, so hopefully others will follow with the lifestyle changes he recommens. He placed her on a Paleo diet which is like gluten free, but restricts more grains/starches. 6 months later, she is feeling great, knows that the slightest gluten is poison for her, and the doctor has declared her RA in remission. He says she will need to continue the paleo diet for another 6 months and then slowly reintroduce one starch at a time until she is on a gluten/casin free diet for life. My point is that even if it isn't celiac via blood work, you may find relief from another autoimmune disease or gluten intolerance through a gluten free or paleo diet.

Good luck on your journey toward a diagnosis.

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      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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