I have chatted with some of the people in England with Celiac Disease. They seem to have the problem that you do of finding a good doctor. I guess it is one of the major problems with socialized medicine. But when they find a good one they promote them.
My original Blood tests also were negative. But when I had the Biopsy they confirmed Celiac. The Blood tests are only 85% acurate so you might be one of the 15% that have a false negative. My doctor also had the attitude that if going gluten free was enough to help with the problems then that was enough for her to diagnose me. She had a great attitude.
My tests also came back as "negative" or in other words "within normal range" so my first doctor said you don't have celiac so don't worry about wheat. My second doctor did the same blood work but asked more questions like when had I last eaten. I had eaten (a gluten filled meal) 12 hours prior and while my numbers were within the normal range, they were at the high end of normal. My doctor said the number would be normal for someone who had a muffin an hour ago, not 12 hours ago. So I can digest gluten, but too slowly, thus I have an intolerence, not celiac.
Tell your doctor to run these tests- and make sure you have had gluten so the tests can show how and if your body is processing it:
There is no standardization in current tests. A number of tests, sometimes collectively referred to as the Celiac Blood Panel, will aid the physician in diagnosis. The tests may include, but are not limited to:
Serologic Tests EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) DGP (Deamidated gliadin peptide antibody) tTGA (IgA anti-tissue transglutaminase)
Tolerance or Measure of Digestion/Absorption Tests Lactose tolerance test. D-Xylose test.
Pounds lost: 0.0
Fitness Minutes: (57,089) Posts: 3,504 3/21/09 11:53 A
I have had itchy arms for years where I will just scratch them till they are bleeding. I use to sleep on ice packs. Since I cut gluten out of my diet they don't itch at all. When I have something with gluten sure enough they itch again. I also noticed the itching with garlic which I tested allergic to. So if you feel better without it then it is worth it to cut it out..
My blood tests have also come back negative, but I definitely have issues with gluten. There are some immune system responses that they just don't know how to test for. If you try a gluten challenge and feel better without it, it's worth going gluten free. The tests aren't always accurate. You know your body though
so far, gluten blood tests were negative. but since then the dr keeps telling me to do elimination diet - which i did - on dairy and wheat ! Wheat and dairy seems to be the biggest culprits for my symptoms, although some of the family thinks it's in my head! and by the looks of it, so does the dr!
Your GP can order the blood work - if you have been eating gluten and are allergic, then your body will usually produce an antibody to the gluten. The blood work will detect the antibody. I am unsure what it is called an antibody blood panel or what.
That is what my doctor told me when she ordered the blood work. Hope it helps.
Problem is, here in the UK, you cannot go and see anybody without the referral of a GP. And if the GP does not know about a test for whatever, there is probably no chance of ever seeing an Allergy doctor. I give UP!
My weight in kg's
current weight: 198.0
Fitness Minutes: (57,089) Posts: 3,504 3/20/09 1:28 P
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