I was just tested for gluten by the U of WA Med Ctr (UWMC), which was negative. Hooray! I think?! I'm confused about the gluten test & the celiac test. I keep reading about the Enterolab's tests. Is there a possibility there would be a difference between them & UWMC? I can eat whole wheat bread and whole wheat spaghetti with no side effects (as long as there is no cheese or meat included) which makes me think gluten is still my friend.
My problem seems to be with oils, fats & dairy. I started entocort last week. I took my first dose (3) at 5:30 AM and I could tell the difference by dinner. Hooray! I'm finding I can even eat a small amount of ice cream and not feel like I want to explode. Oils & fats still set off abdominal rumbling tho - and Cinnamon Bears (gummy candy) - what on earth could they have in them?!
Bev, The Confused Newbie
Gluten Testing - Result Comparison
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gluten Testing - Result Comparison
Bev
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
Hi Bev,
The testing you did would have been based on looking for the gluten antigen in your blood. It is a very specific test - it gets few/no false positives, but lots of false negatives. The mainstream medical community don't even accept a negative result as complete proof that someone is not celiac, and requires a biopsy to be absolutely certain.
The problem is, that test is nowhere near as sensitive as the stool test from Enterolab. So you may test negative on the regular blood test, and positive on the Enterolab tests. The Enterolab ones aren't widely recommended by the doctors for reasons that would start a long discussion, but undoubtedly include the fact that is simply isn't their local lab that they use all the time.
If you are able to eat wheat products without it making your CC worse, then you may be one of the small number of MC folk who don't have a gluten intolerance. Lucky you. Or it could be that you are like me and gluten is causing other health symptoms (the sort you probably just ignore as 'everyone has asthma/eczema/...') and not causing D.
It would still be worthwhile doing the Enterolab tests if you can do so.
It is great that Entocort is working so well for you. This gives you a breather so you can work out what food causes problems and start to avoid it. You don't want to stay on Entocort forever if you can avoid it, and your doctor is likely to get you off it again as soon as possible. Most people find the symptoms come back as soon as they reduce the dose on the drug, hence the need to get going on sorting out the food intolerances.
It sounds like dairy may be an issue for you. The oils one is interesting. Quite a few of us also have had gallbladder problems/removal and fat absorption issues can be associated with this - and can cause D.
Lyn
The testing you did would have been based on looking for the gluten antigen in your blood. It is a very specific test - it gets few/no false positives, but lots of false negatives. The mainstream medical community don't even accept a negative result as complete proof that someone is not celiac, and requires a biopsy to be absolutely certain.
The problem is, that test is nowhere near as sensitive as the stool test from Enterolab. So you may test negative on the regular blood test, and positive on the Enterolab tests. The Enterolab ones aren't widely recommended by the doctors for reasons that would start a long discussion, but undoubtedly include the fact that is simply isn't their local lab that they use all the time.
If you are able to eat wheat products without it making your CC worse, then you may be one of the small number of MC folk who don't have a gluten intolerance. Lucky you. Or it could be that you are like me and gluten is causing other health symptoms (the sort you probably just ignore as 'everyone has asthma/eczema/...') and not causing D.
It would still be worthwhile doing the Enterolab tests if you can do so.
It is great that Entocort is working so well for you. This gives you a breather so you can work out what food causes problems and start to avoid it. You don't want to stay on Entocort forever if you can avoid it, and your doctor is likely to get you off it again as soon as possible. Most people find the symptoms come back as soon as they reduce the dose on the drug, hence the need to get going on sorting out the food intolerances.
It sounds like dairy may be an issue for you. The oils one is interesting. Quite a few of us also have had gallbladder problems/removal and fat absorption issues can be associated with this - and can cause D.
Lyn
Hi Bev,
Lyn wrote a great response, and I can't add much to what she said. Regarding what she said about gluten sometimes not causing D, but causing other health symptoms: For some of us, it can cause us to seem to react to various other foods, but not to the gluten itself. I kept a food diary for two and a half years, but before I started the diet, I was never able to see any connection between my reactions, and the gluten in my diet.
Most of us can tell, after we have been on the diet for a while, because after we avoid it long enough, we will then react relatively promptly to it, if we eat any. Before we begin the diet, though, it is almost impossible to see a connection, in some cases.
And, as Lyn pointed out, a negative celiac blood test means nothing, because all of us here, (except for those few who also have fully-developed celiac disease), will always return negative results to those tests, and yet most of us are just as sensitive to gluten as the average celiac.
Tex
Lyn wrote a great response, and I can't add much to what she said. Regarding what she said about gluten sometimes not causing D, but causing other health symptoms: For some of us, it can cause us to seem to react to various other foods, but not to the gluten itself. I kept a food diary for two and a half years, but before I started the diet, I was never able to see any connection between my reactions, and the gluten in my diet.
Most of us can tell, after we have been on the diet for a while, because after we avoid it long enough, we will then react relatively promptly to it, if we eat any. Before we begin the diet, though, it is almost impossible to see a connection, in some cases.And, as Lyn pointed out, a negative celiac blood test means nothing, because all of us here, (except for those few who also have fully-developed celiac disease), will always return negative results to those tests, and yet most of us are just as sensitive to gluten as the average celiac.
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.
Of course, despite what we said, and despite how rare it would be, it is still certainly possible that you could be sensitive to dairy, and not be sensitive to gluten.
Tex
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.