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Daer Friends,
I received many helpful replies regarding the issue of blood test vs. symptoms. (Blood test "acceptable range" about 1.7- whatever that means) and symptoms bad if I eat gluten. The first one is long, but very well thought out, so I have included most of it.
Thanks for your health and patience. I live rurally. My doctor is a nice GP.. he gave me the blood test because I asked him to do it! I think I was the first patient in 20 years that has done that! He did say I seem to be gluten sensitive -in other words, he respected my experience of my symptoms.
joy!
Mary
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Hi,
I think this is an all too common problem: I'm in just about the same boat.
The diet worked (and I hadn't been eating much wheat before that), THEN I
got the test. Here are some thoughts though:
1. The blood test definitely gives false negatives. The antibodies they are
testing for are mainly in your gut, and only a few of them leak into your
blood. Dr. Fine's test is better: it tests your gut. But the antibodies go
away pretty quickly after you stop eating gluten.
2. There are 2 different immune reactions (that I know of) to wheat. One is
the normal allergy reaction (nose stuffiness etc.) the other is in the gut
(the celiac-style reaction). You can have either or both. But you can have
the celiac-style reaction and not have it very bad, or not have much gut
damage yet, in which case it won't show up on any test.
3. You can also have food intolerance reactions that don't involve the
immune system, to wheat. These are issues that have to do with digestion,
such as not being able to digest grains because of the phytate content or
causing bacterial imbalances in the gut or blood sugar problems from
refined carbs. These sorts of reactions can cause diarrhea, bloating, etc.,
but they don't generally cause the myriad of other symptoms associated with
celiac. Some people also have opiate problems from gluten, which isn't
really celiac but is probably related.
4. I think the tests are mainly useful for people who have NO symptoms (as
is commonly the case with celiac). The doctors like to have a firm
diagnoses to help convince people to follow a gluten-free diet, and to help
rule out other causes. ...I agree with Dr. Fine: if you eat gluten and get sick, that's a test! And before they
invented endoscopies and blood tests, that WAS the test! You put a sick kid
on a diet without gluten, and if they got better, the problem was
considered to be celiac.
5. The "gluten challenge" doesn't seem to be very reliable either, from
what I've read here. There are people who just don't produce enough IgA,
which could be the problem, or maybe there is a different kind of reaction
that mimics celiac without the IgA: I don't know. But it seems you can get
really really really sick from gluten and not show up on the test!
6. If you want some assurance that your problem is a celiac-style reaction
and not an allergic one, you should get the gene test. The allergic-style
reactions and digestive reactions are a LOT less of a health risk than
celiac, and sometimes they can actually be "cured", so it's good to know.
If you have the celiac gene, then even if you don't currently have an
immune reaction bad enough to call "celiac", you have a really good chance
of developing it. If you don't have the gene, you won't (there are a few
people who seem to have celiac but don't have the gene: no on knows what is
going on there, maybe a reaction to some other protein or another gene, but
it's rare).
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Hi. I'm with you in the self-diagnosis group. As to the urinary
incontinence, I've been gfcf, etc free for 4.5 years, now, and any time I
accidentally get gluten I still have that urinary incontinence. Somewhere I
read that some of this is from the bladder walls actually swelling in size,
reducing the volume it can hold, from allergies. ....
As to your test levels, if you had eaten more gluten, the numbers would have been
higher. Besides, what's "an acceptable range"? Seems to me that any number
at all shows an allergy. No allergy would be the value "0". Good luck to
you. Hold your ground.
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My doctor told me that between 5 and 10% of celiacs test negative with the
blood tests.
I tested negative, but went gluten free anyway, because I was terrified. I
had painless shotgun diarhea, no warning, no control at all.
After being gf for 10 months, surprise! surprise! I was once again able to
eat dairy. Personally, that alone convinced me of celiac's disease...it was
apparent that SOMETHING had healed in me over that period of time.
Be true to yourself. If it works for you, do it.
_______________________
I concur. Follow your gut instincts on this one ;-)
I have biopsy diagnosed relatives too, but my biopsy was negative. I have been GF
for 18 months now. I feel great. What a relief.
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