Low energy?

[KnottedYet]

I feel bad for people with celiac disease.

I bet you a dollar you have celiac disease.


(and it's not just wheat. it's wheat, oats, barley, rye, spelt, triticale, and I think kamut, too. and all their derivatives and products. including beer. and the glue on envelopes.)

[DebSP]

Maybe I should go and get tested. I can't believe the products that contain gluten (wheat especially) when you start reading labels! If I have it, I can't send you your dollar because I can't lick the envelope!

[KnottedYet]

Blood antibody tests can give false negatives.
Small intestine biopsies can give false negatives.

And you have to be eating the equivalent of 6 slices of bread a day for weeks before the test.

The "gold standard" in the US is the small intestine endoscopic biopsy. Expensive. Kind of harsh on the body. Twilight anesthesia. False negatives.

The "gold standard" for the rest of the known universe is an extremely strict 2 week ABSOLUTELY gluten free diet. If you feel better after 2 weeks, you have celiac, eat carefully for the rest of your life.

There are also genetic tests which are highly accurate, but insurance doesn't pay for them. Last I heard those were $2,000 or so.

Lots of info in this looooong thread: http://forums.teamestrogen.com/showt...ghlight=celiac

[Lesley_x]

Blood antibody tests can give false negatives.
Small intestine biopsies can give false negatives.

And you have to be eating the equivalent of 6 slices of bread a day for weeks before the test.

The "gold standard" in the US is the small intestine endoscopic biopsy. Expensive. Kind of harsh on the body. Twilight anesthesia. False negatives.

The "gold standard" for the rest of the known universe is an extremely strict 2 week ABSOLUTELY gluten free diet. If you feel better after 2 weeks, you have celiac, eat carefully for the rest of your life.

There are also genetic tests which are highly accurate, but insurance doesn't pay for them. Last I heard those were $2,000 or so.

Lots of info in this looooong thread: http://forums.teamestrogen.com/showt...ghlight=celiac

I have to agree with this. I had horrendous stomach pain and rashes for 10 years before I was finally tested for coeliacs. I was nearly kicked out of university, was getting a couple of hours sleep a night from being up in pain. Got a negative result on the biopsy. What amazes me is the endoscopy only reaches 2 inches of the 24 foot long small intestine, and they test 3-5 tiny areas, yet this is the gold standard?

Here on the NHS you cannot receive gluten free prescription (products are not available OTC) without a positive intestinal biopsy. My docs blamed it on anxiety for 10 years and still refuse to believe me.

However, within a few days of being GF, I was basically cured. I have been on it for 2 years and the difference is incredible. I have energy, I'm no longer in chronic pain... but the docs still do not think I have coeliacs.

Interestingly enough, I was diagnosed with sjogren's syndrome about a year after going GF (at 22!) and it's closely associated with coeliacs disease. But according to them I am still not coeliac. There is a family history of it too.

Crazy.

[rain]

wow, i've been pretty oblivious - I had no idea so many people on this forum would be celiac or gluten intolerant. I just got diagnosed, thankfully. I've been sickly my whole life and most clearly for the last 20 years. 3 months ago I quit eating gluten and among other improvements that deep fatigue is gone. It's completely awesome. It makes giving up wheat super-easy. I'm still roller-coasting as my body recovers but that's ok. As for missing chocolate chip cookies -- no biggie, I have no desire to ever go back to the struggles I seem to be leaving behind!!

[KnottedYet]

I have to agree with this. I had horrendous stomach pain and rashes for 10 years before I was finally tested for coeliacs.

The rashes/eczema were a real bear. I had them on my hands and feet, to the point I'd have to coat my hands with greasy lotion and wear soft cotton gloves all the time. I had the typical tiny deep itchy blisters, but since they were on atypical sites my dermatologist didn't make the connection with celiac disease.

I didn't get the nasty canker sores, but I did get patches of flattened villi on my tongue. ("geographical tongue")