I've tested the gluten factor twice and failed both times

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IDreamInColor
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I've tested the gluten factor twice and failed both times

Post by IDreamInColor »

As per my enterolab results, my gluten sensitivity was at 9 which put me in the normal range, and the interpretation said I was free to eat gluten..at that point I had already been off gluten for a few weeks and the D had dissipated, so I thought "YES" I'm sooo going right now to eat a piece of that cake I made for Halloween,lol So I ate it and nothing happened, so the next day I ate a sandwich with regular bread, still nothing happened. But on the third day, boomya!..the D came back. So back off the gluten again and I stayed faithful to that and I got better within 3 days.
Well, this past Sunday I decided to test it again hoping that maybe the last episode was a coincindence and maybe just maybe I really was ok to eat gluten, oh glory be,lol .., so for three days I have been eating gluten, and guess what?..yep, you guessed it, today is the third day and the D came back. Took the wind right out of my sails!
NO MORE GLUTEN FOR ME!!
I have no idea why my gluten test is negative, and what makes it even more unbelievable is that I am double DQ1, which apparently makes me even more sensitive to gluten. I am still waiting on the results of the IgA test, and if it's positive it will explain the negative results, but if it's postive, then I'm just a mystery woman ;)

This brings me to a question. I have noticed that most of you react immediately to being gluten'ed, why does it take 3 days to rear it's ugly head on me?

Another question I have. My enterolab was positive for a casein and yeast sensitivity, but neither of those cause me any tummy grief, is there harm in continuing to eat casein and yeast? Gluten seems to be the only thing that triggers the D.
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Zizzle
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Post by Zizzle »

I think you just answered your own question. You just ate sandwich bread, cake, etc. which have something in common that is not gluten....YEAST!! And probably some casein too!!! So it may not be the gluten after all.
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Post by IDreamInColor »

Zizzle, it couldn't be that because while I'm gluten free I eat quite a bit of Udi's bread, and it contains yeast, and I have no problems with that.
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tex
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Post by tex »

Good for you, for tracking it down, and removing all traces of doubt. I'm the same way. When I did an oat challenge, I wasn't satisfied the first time I got D, (because it took 6 weeks, the first time, due to the fact that I hadn't eaten any oats in years, and then it took 6 weeks for the D to stop). The second test, though, only took a few hours to clean me out, and so did the third, so I was satisfied beyond a shadow of a doubt. :lol:

We all have different reaction times to various trigger foods. Also, for most of us, the longer we remain gluten-free, (so that the residual antibody production has a chance to diminish significantly), the more sensitive we become. I'm guessing that a lot of people who claim to not be sensitive to gluten, are similar to you, and have a delayed reaction, so they simply haven't checked it out carefully enough to be able to track down their sensitivity.

If your IgA deficiency test is negative, then that means that you are not sensitive to the alpha gliadin fraction of gluten. Instead, you are sensitive to one or more of the other gliadin fractions, or to one or more of the glutenin fractions, none of which are tested for by either the stool tests or the blood tests. IOW, you are atypical, but still obviously gluten-sensitive.

Concerning casein and yeast reactions, if it takes 3 days to react to gluten, there's no telling how long it may take to react to casein or yeast. Also D is not a requirement to indicate sensitivity. Many people, (most, in fact), who are sensitive to such proteins, (including gluten), are asymptomatic. Be aware that casein is known to cause villus atrophy, (similar to gluten), for some people who are casein-sensitive. It depends on whether or not the small intestine is involved. Soy can do the same, of course. Yeast sensitivity usually indicates a yeast overgrowth, and most people who have a yeast overgrowth don't realize it.

As far as risks go, this is uncharted territory, since it mostly has not been researched, (and since some patients will eventually develop villus atrophy, and others probably won't). The only relevant evidence that I can offer, is the fact that the latest research supposedly shows that asymptomatic celiacs do not have the increased risk of non-Hodgkins lymphoma that untreated symptomatic celiacs are known to have. FWIW.

Tex
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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.
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Post by mbeezie »

My level for soy was 9, dairy 10 and gluten 17 - not high numbers but all very reactive for me. Clearly you react so it's best to avoid. Maybe you are IgA deficient - we've had other members with a similar story.

Mary Beth
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IDreamInColor
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Post by IDreamInColor »

Thanks all, this disease sure is tricky. I've had the double DQ1's my whole life, does it just lay dormant and then all of a sudden one day you are sensitive to it? It's just craziness, isn't it?!!!
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tex
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Post by tex »

Yes, a lot of people have those genes, but few ever develop MC. Some environmental factor has to trigger the disease, such as a drug or other chemicals, food sensitivities, parasites, viruses, a bacterial infection, yeast overgrowth, etc. Even stopping a long-term smoking habit can trigger MC, (probably because of the sudden chronic stress pattern - nicotine is protective of MC, Alzheimer's, Parkinson's, etc.)

Tex
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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.
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Post by Gloria »

I have no idea why my gluten test is negative, and what makes it even more unbelievable is that I am double DQ1, which apparently makes me even more sensitive to gluten.
I'm not sure that being a double DQ1 means someone is more sensitive to gluten as much as it means you are likely have more sensitivities and thus have more difficulty in achieving remission.

Gloria
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Post by Linda in BC »

Dear Idream:

Is it possible that you are reacting to something in the wheat products you are eating other than the wheat? When you tested, did you eat different things with gluten in them on each of the three days? ( for example , each time, whatever you ate had the ingredient you are reacting to, but the first two days did not. I say this because it is very easy to blame the wrong thing. I had a devil of a time figuring out that I was reacting to eggs in my homemade baking ( it never occurred to me that it might be the eggs) so I kept blaming different things. I have not eaten corn for 4 months (or anything with corn derivatives in it) because of doing this, but last night because I am doing so well (now that I have stopped taking magnesium) I decided to revisit corn and had actual corn with dinner. This morning I am fine, even have C. :roll:

Maybe if you ever do the challenge again, eat the same thing for three days in a row, just to be sure. In any good research you need to control the variables! :grin:
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IDreamInColor
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Post by IDreamInColor »

Linda, those are good point, the only thing I ate different was regular bread instead of udi's. I started the test with a sloppy joe on a regular white bun. Sloppy joe on udi's doesn't affect me. I also ate a steam-umm sandwich on regular white bread, and there again, steak-ums on udi's doesn't bother me. So really I only ate regular bread for my test. Could it be something in regular bread besides gluten?
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Post by Linda in BC »

Yes, it could be milk or eggs but I just checked the ingredients on an Udi's loaf and it contains eggs , so it couldn't be that. But Udi's doesn't contain milk and a lot of regular bread does. Maybe check and compare the ingredients on the bread you ate and Udi's. .

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IDreamInColor
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Post by IDreamInColor »

I don't think it could be milk or eggs, I don't react to either one of them. :)
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Post by Linda in BC »

Hmmm.. all things seem to point to the gluten. You ARE mystery woman! :smile: :sad:

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Bifcus16
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Post by Bifcus16 »

I Dream,

Can you list what is in the bread? For example, it may have preservatives, flavourings, stabilisers etc that cause you problems.

What happens with really basic wheat products? For example, if you add some regular flour to eggs with some water and make 'crepes' or fritters (with your favourite veg added) or something like that, do you still react?

Lyn
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