'gluten Intolerance' In The Long Term

[cdog7]

Background:

A couple years ago I was suddenly horribly ill all the time. All the classic celiac symptoms, with the only exception being that I gained a lot of weight fast and was ravenously hungry all the time. I had chronic fatigue, chronic joint pain, brain fog, bloating, diarrhea (you know, our special bulky kind). My mother has celiac disease. Seems like a no brainer, right?

And yet, I had a terrible doctor experience. I had this annoying HMO plan at the time, and it was very difficult to do much about this. My primary care doctor (who I've since changed) was very reluctant to even test me for celiac because of my weight gain

[ravenwoodglass]

If you really feel you need a 'doctor derived' diagnosis then yes you would need to do a lengthy challenge and there would still be a chance of a false negative.

Celiac tests do have a fairly high rate of false negatives and you have had a good resolution of symptoms on the diet. Celiacs that are not on the gluten free diet do have higher rates of some cancers and higher risks for developing other autoimmune issues. However within 5 years on the diet the cancer risk goes to that of the 'normal' population. There is always a slightly higher risk of other autoimmune issues when we have one autoimmune disease but you do lower your risk if you are gluten free and need to be. It seems your body has clearly let you know that you are doing the right thing by being on the diet. The choice whether to challenge or not is up to you.

[Skylark]

Gluten intolerance is poorly understood. Some scientists think it's an early stage of celiac, but there are also documented immune reactions to wheat outside of the celiac mechanism. Your best bet is to eat gluten-free and not worry about it. I bet we'll eventually get better diagnostic tests that don't require us to poison ourselves to know what's going on.

[cdog7]

Thanks, both of you, I appreciate that. Since I do react to both wheat and barley for sure, maybe that's an indication that it is celiac, or early stages of it? I do hope both conditions become better understood, both in research and by everyday doctors! Well, don't we all.

That actually does make me feel better hearing that being gluten-free reduces additional health risks so much. My mother was sick for much longer than I was before anyone figured out what was going on, and was also diagnosed much older, both of which may have added complications.

Thanks again for the responses! I'm just going to keep up the gluten-free diet, most definitely, and do my best to keep current with the latest developments. The best we can do!

[mushroom]

Good move. You will find a high percentage of posters on this board are actually self-diagnosed for one reason or another. It does not make their intolerance to gluten any lesser than anyone else's, and eating gluten for them would be just as high risk as for those with a diagnosis IMHO. Now I just have to convince my husband that he needs to read labels better - diagnosed as "borderline" celiac, but also has developed dermatitis herpetiformis and psoriasis since the 'borderline' diagnosis (when he gets careless ) I never eat anything he buys without reading the label, even though there is supposedly no gluten in our gluten free house

[Marz]

Hello and welcome

< -- Self diagnosed here, after blood tests and biopsies were negative.

I'd say that poisoning yourself with gluten for the purpose of attempting to get a definate diagnosis using tests that are known to have a high false-positive rate is not worth it It's useful if you're borderline, or symptoms of glutening are mild enough to be tempted to eat gluten every now and then (Which can be worse than just being ignorant of your gluten sensitivity). It sounds like you'll be serious about being gluten-free without the diagnosis.

Feeling better on the gluten-free diet, and feeling super crap with symptoms coming back full force when eating gluten, is just as definitive a diagnosis in my opinion.