question about gluten and celiac testing
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crystal552000
- Little Blue Penguin
- Posts: 38
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- Location: kansas city Mo
question about gluten and celiac testing
My doctor though a little hazy after waking up from the colonoscopy said said something about celiac testing, even though I have already taken the blood test which came up negative. My question is this, what if they did an upper and looked at my small intestines, and they did the biopsy would it confirm that I have villous atrophy, does just sensitivity cause this atrophy. I wonder this because I cannot pay for enterolab testing but since the doctors already want to test may again I may talk them into doing an upper GI series just wondering what your thoughts are on this
Crystal,
Gosh, I'm so sorry you keep having to go through all these awful tests. From the collected experience of many here, you can be sicker than sick with gluten-induced problems, and not have villous atrophy. So... "passing" that test, like the inaccurate blood tests, in no way means that you aren't being sickened by gluten.
In my opinion, the most reliable "budget friendly" way to determine whether you are sensitive to gluten is actually free. You just stop eating it. If you feel better within 6-8 weeks, that's a pretty good hint. If you are a glutton for punishment at that point, you could eat some gluten... I did that by mistake (I was already totally convinced), and it was the worst week of my life. That's actually more important information than what the inside of our small intestines look like - and more directly useful.
For this to work, you have to eliminate gluten 100% - just "cutting down" doesn't do the trick. If you're feeling awful, you'll probably feel better faster if you also eliminate dairy at the same time - even if it turns out later that you can eat it without problems, once you're in full-on symptom hell, it's just too irritating for virtually 100% of us.
Hang in there,
Sara
Gosh, I'm so sorry you keep having to go through all these awful tests. From the collected experience of many here, you can be sicker than sick with gluten-induced problems, and not have villous atrophy. So... "passing" that test, like the inaccurate blood tests, in no way means that you aren't being sickened by gluten.
In my opinion, the most reliable "budget friendly" way to determine whether you are sensitive to gluten is actually free. You just stop eating it. If you feel better within 6-8 weeks, that's a pretty good hint. If you are a glutton for punishment at that point, you could eat some gluten... I did that by mistake (I was already totally convinced), and it was the worst week of my life. That's actually more important information than what the inside of our small intestines look like - and more directly useful.
For this to work, you have to eliminate gluten 100% - just "cutting down" doesn't do the trick. If you're feeling awful, you'll probably feel better faster if you also eliminate dairy at the same time - even if it turns out later that you can eat it without problems, once you're in full-on symptom hell, it's just too irritating for virtually 100% of us.
Hang in there,
Sara
Hi Crystal,
I agree with Sara, the diet is almost free, since you have to eat, anyway - it just changes some of the things that you eat.
If you want to let them do an upper endoscopy - yes, if they find enough small intestinal villus damage to justify a marsh 2 or greater rating, (Marsh 2 is minimal damage, while Marsh 4 is total villus atrophy), then you would probably be diagnosed with celiac disease. Actually, it's possible for casein, (the primary protein in all dairy products), to cause villus atrophy, but your doctors probably are not aware of that fact, and in most cases, anyone who is casein-sensitive, is also gluten-sensitive, anyway.
If they discover a Marsh rating of 0, (normal histology), or 1, (lymphocytic infiltration, but no villus damage), they would not diagnose you with celiac disease. A Marsh rating of 1 is somewhat common for people with MC, but most GI docs are unaware of that, so they do not associate a Marsh 1 rating with gluten-sensitivity, unfortunately, even though it most definitely is connected with gluten-sensitivity.
The bottom line is, if your blood tests for celiac disease were negative, then your upper endoscopy biopsy results would almost certainly show a Marsh score of 1 or less, which your doctors would interpret as negative for celiac disease/gluten-sensitivity.
At least that's my opinion, FWIW.
Tex
I agree with Sara, the diet is almost free, since you have to eat, anyway - it just changes some of the things that you eat.
If you want to let them do an upper endoscopy - yes, if they find enough small intestinal villus damage to justify a marsh 2 or greater rating, (Marsh 2 is minimal damage, while Marsh 4 is total villus atrophy), then you would probably be diagnosed with celiac disease. Actually, it's possible for casein, (the primary protein in all dairy products), to cause villus atrophy, but your doctors probably are not aware of that fact, and in most cases, anyone who is casein-sensitive, is also gluten-sensitive, anyway.
If they discover a Marsh rating of 0, (normal histology), or 1, (lymphocytic infiltration, but no villus damage), they would not diagnose you with celiac disease. A Marsh rating of 1 is somewhat common for people with MC, but most GI docs are unaware of that, so they do not associate a Marsh 1 rating with gluten-sensitivity, unfortunately, even though it most definitely is connected with gluten-sensitivity.
The bottom line is, if your blood tests for celiac disease were negative, then your upper endoscopy biopsy results would almost certainly show a Marsh score of 1 or less, which your doctors would interpret as negative for celiac disease/gluten-sensitivity.
At least that's my opinion, FWIW.
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.
I think for many people, the "proof is in the pudding," but for some of us, eliminating gluten alone made no difference in our symptoms or how we felt. If gluten is the major issue, it probably will make a noticible difference, but if there are other problems, the difference may not be discernible.
I would hate to have someone eliminate gluten, realize that their symptoms remained the same, and draw the conclusion that they are not gluten sensitive. We have had members who've done that.
Gloria
I would hate to have someone eliminate gluten, realize that their symptoms remained the same, and draw the conclusion that they are not gluten sensitive. We have had members who've done that.
Gloria
You never know what you can do until you have to do it.