Hi everyone,
Well last night I had a terrible time, very bad D. So I decided I was going to take the bull by the horns and get a blood test done for gluten at my GP. I got some info about what tests I needed from the internet copied them down and made a appointment with doctor. I was determined to get something done! I went and saw the doctor ans asked if I could be reacting to gluten, she said "I could be, just try cutting it out" so I asked if there was a blood test to determine whether I had problems with it or not. Her response was "not really the don't work." So I pulled out the info I had got off the Coeliac website that we have in the UK and showed her the two tests that can be done, she slightly retractated what she had just said and has organised me to have some blood tests done in two weeks. She then mentioned that gluten free foods were expensive, so I answered back "but you can perscribe certain foods though ( bread, pasta etc) on the NHS" she stumbled a bit then said "sometimes we can.
So it seems that I might be finally getting some treatment for my mc at last.
I need my life back!!!
Round One - Won!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Hogget.
I don't want to burst your bubble, but these blood tests may not tell you anything.....especially if you are not full blown celiac ( so she was kind of right). The only real way to tell if you are producing IgA antibodies is to test your stool. There is only one lab in this country that does that - Enterolab. I believe you can send a sample from the UK, but I would look up the website and see.
Taking it out of your diet is a smart thing to do anyway. Almost EVERYONE on this forum is gluten intolerant. A lot of us are dairy intolerant also. Some cannot eat soy and a smaller number cannot eat eggs. Those are the main four culprits of inflammation. Once you take gluten out of your diet, it may take a while to see a difference. The antibodies can last months in your body.
If you want to get serious about treating your MC, then know that it's all about diet. While we are in a flare, most of us stay away from "irritant foods" .... like RAW fruits and veggies, salad, beans and legumes, acid foods like tomato and citrus, maybe coffee and black tea also. Most of us stick to a flare diet of meats, cooked veggies, broth, rice, applesauce...etc. When it comes to this group of foods, we all vary as to how much we react. These are foods that can later be tested back in after you have healed a bit.
Good luck getting this under control.
Leah
I don't want to burst your bubble, but these blood tests may not tell you anything.....especially if you are not full blown celiac ( so she was kind of right). The only real way to tell if you are producing IgA antibodies is to test your stool. There is only one lab in this country that does that - Enterolab. I believe you can send a sample from the UK, but I would look up the website and see.
Taking it out of your diet is a smart thing to do anyway. Almost EVERYONE on this forum is gluten intolerant. A lot of us are dairy intolerant also. Some cannot eat soy and a smaller number cannot eat eggs. Those are the main four culprits of inflammation. Once you take gluten out of your diet, it may take a while to see a difference. The antibodies can last months in your body.
If you want to get serious about treating your MC, then know that it's all about diet. While we are in a flare, most of us stay away from "irritant foods" .... like RAW fruits and veggies, salad, beans and legumes, acid foods like tomato and citrus, maybe coffee and black tea also. Most of us stick to a flare diet of meats, cooked veggies, broth, rice, applesauce...etc. When it comes to this group of foods, we all vary as to how much we react. These are foods that can later be tested back in after you have healed a bit.
Good luck getting this under control.
Leah
Hi,
What can I say? I agree with everything that Leah wrote. Your doctor is obviously much, much better informed than most other doctors these days, because those blood tests are almost totally worthless except for someone who has fully-developed coeliac disease. And the odds of you having fully-developed coeliac disease are rather small (roughly 1 %). Furthermore, even if you have coeliac disease, but it is not fully-developed, then the odds that those blood tests will detect it are only about 1 in 20.
Here's the bottom line. Gluten sensitivity may be as high as 1 in 3 people in the general population, but about 75 % of those will never develop coeliac disease. They have non-coeliac gluten sensitivity, and the blood tests that you described can never diagnose any of those individuals. For every 5 people that the doctors successfully diagnose by using those tests, another 95 people have coeliac disease, but the blood tests produce false negative results for them. Therefore, as your doctor said, the tests simply don't work (for at least 95 % of the people who are sensitive to gluten).
Kudos to your doctor. She is way ahead of her colleagues, and she obviously knows what she's doing. Her suggestion to cut gluten out of your diet to see if that helps, is right on target. And she is probably correct about the NHS and free gluten-free food, also. Non-coeliac gluten sensitivity will not qualify for a prescription for free GF food — only coeliacs qualify for that prescription. That's unfortunate, because we are just as sensitive to gluten as coeliacs, but the rules are written for coeliacs.
Tex
What can I say? I agree with everything that Leah wrote. Your doctor is obviously much, much better informed than most other doctors these days, because those blood tests are almost totally worthless except for someone who has fully-developed coeliac disease. And the odds of you having fully-developed coeliac disease are rather small (roughly 1 %). Furthermore, even if you have coeliac disease, but it is not fully-developed, then the odds that those blood tests will detect it are only about 1 in 20.
Here's the bottom line. Gluten sensitivity may be as high as 1 in 3 people in the general population, but about 75 % of those will never develop coeliac disease. They have non-coeliac gluten sensitivity, and the blood tests that you described can never diagnose any of those individuals. For every 5 people that the doctors successfully diagnose by using those tests, another 95 people have coeliac disease, but the blood tests produce false negative results for them. Therefore, as your doctor said, the tests simply don't work (for at least 95 % of the people who are sensitive to gluten).
Kudos to your doctor. She is way ahead of her colleagues, and she obviously knows what she's doing. Her suggestion to cut gluten out of your diet to see if that helps, is right on target. And she is probably correct about the NHS and free gluten-free food, also. Non-coeliac gluten sensitivity will not qualify for a prescription for free GF food — only coeliacs qualify for that prescription. That's unfortunate, because we are just as sensitive to gluten as coeliacs, but the rules are written for coeliacs.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi,
Thanks for your input, I know that every test has it's flaws and to be honest I am expecting a neg result, but at least this doctor hasn't brushed it under the rug as did the other two doctors in the practice has. Diet wise I have cut a few things out all ready but I have to be carefull until I have had the tests done. I have cut out completely bread, pastries, most breakfast cereals, gravy, biscuits etc. If I eat anything and it starts the gurgling away I throw it away and add it to the list of foods not to eat again. I find that the worst culprits are foods with wheat in them, they really give me problems.
Thanks for your input, I know that every test has it's flaws and to be honest I am expecting a neg result, but at least this doctor hasn't brushed it under the rug as did the other two doctors in the practice has. Diet wise I have cut a few things out all ready but I have to be carefull until I have had the tests done. I have cut out completely bread, pastries, most breakfast cereals, gravy, biscuits etc. If I eat anything and it starts the gurgling away I throw it away and add it to the list of foods not to eat again. I find that the worst culprits are foods with wheat in them, they really give me problems.
It's a good start Hoggett. When you finally go completely gluten fre, you will have to check the labels of everything because it can be in so many foods without you knowing about it. .... and to get the benefit of being on a gluten free diet, you must be 100 percent GF ( or your body will continue to produce antibodies to even a small amount)
Good luck and keep us posted
Leah
Good luck and keep us posted
Leah