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Have I Been Misdiagnosed?

Ginny

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Ginny Rookie
Ginny
Posted

I was diagnosed with Celiac in Oct 06 with a positive biopsy (Dr said it showed mild blunting). I immediately went gluten-free and my GI symptoms resolved rather quickly. Since then I have occasionally felt like I was "glutened" but was typically able to trace it back to the source-most of which were "malt" ingredients. When they originally tested my blood for the antibodies, only one of the three came back as elevated. So I got to thinking...are the three antibodies they test for correlated with the three grains we are to avoid, wheat, barley and rye? I decided to run a little experiment of my own--I ate bread and ravioli for dinner to see if I would react to the wheat. No symptoms at all. Is it possible to be sensitive to only one of the three grains? I am very confused and would really appreciate any feedback!

Thanks!

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Lisa Mentor
Lisa
Posted

Gluten is a protein found in wheat, barley, malt and rye. That protein, when ingested, will kick off an autoimmune reaction in which you body will attack itself.

Celiac is forever. Whether you reacted to the bread or not, you are still causing damage to your intestines.

gfp Enthusiast
gfp
Posted
are the three antibodies they test for correlated with the three grains we are to avoid, wheat, barley and rye?

Sorry no....

They are just different types of antibody

google : Immunoglobulin isotypes

Ginny Rookie
Ginny
Posted
  • Author

I guess I just don't understand why I have an (almost) immediate severe reaction to even a small amount of malt and no reaction at all to (large amounts of) wheat flour. I understand that the antibodies they test for are not specific antibodies for wheat, rye and barley--I am just trying to make sense of all of this. I am wondering if it is possible to be allergic and have reactions to one grain (ex:barley), but not others (flour). The glutens in wheat, barley and rye are very similar, but not chemically the same.

Jestgar Rising Star
Jestgar
Posted

Maybe you're also allergic to barley as well as being intolerant to gluten.

Guhlia Rising Star
Guhlia
Posted

Food for thought... I react VERY strongly to minute amounts of gluten, but if I purposely ingest large amounts I have no symptoms. Not that I purposely ingest large amounts, but my point is that small amounts affect me much harder than large amounts.

ravenwoodglass Mentor
ravenwoodglass
Posted

Don't forget also that an intolerance is quite different than an allergy. It may take up to 5 days for your body to react.

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CMCM Rising Star
CMCM
Posted

I've noticed a real inconsistency of results with regard to gluten. I, too, can sometimes eat certain things and have no real reaction. Other things (even small amounts of soy sauce is one) and sometimes hidden things can cause a huge reaction. I've given up trying to figure it out, but realize that I am so much better off 99% of the time when I am completely careful to totally avoid gluten. I've read a number of times that the fact that you can on occasion eat gluten with no reaction means nothing....it doesn't mean no damage is being done.

gfp Enthusiast
gfp
Posted
Food for thought... I react VERY strongly to minute amounts of gluten, but if I purposely ingest large amounts I have no symptoms. Not that I purposely ingest large amounts, but my point is that small amounts affect me much harder than large amounts.

Guhlia... I'm exactly the same....

I do have a theory as to why.... its just my theory but anyone else is encouraged to add their 2c ....

Last time I mentioned this someone decided to tell me what I can and cannot do with MY body and told me what I should and should not say regarding things which were true.... erm the result of which I ended up getting an offical warning for trying to correct the lies that were being spread about what I said.

In order to avoid this....

First off...

DO NOT TRY THIS AT HOME

Secondly the opinion of someone telling me what I can and cannot do with my own body and then telling me I have no right to actually report it is worth a lot less than nothing...

Don't tell me I'm not interested...

Ok so having said

DO NOT TRY THIS AT HOME

I have experimented with this after I have been accidentally glutened....

Basically on vacation, eating out sooner or later I tend to get caught out....

At this point depending how long the rest of the vacation is... I have made a descision to just say to hell with the diet until I get home... which basically means my vacation stops revolving around where I can eat and requiring myself and my girlfriend to schedule our whole vacation around me being able to find something to eat. This can extend as far as not being able to visit a whole town... It took me many trips to Tuscany to eventually see Seinna ... the travel time and heat making it near impossible to actually spend a day and take enough snacks while not being able to find anywhere safe...

DO NOT TRY THIS AT HOME

What I have noticed is I don't actually feel any sicker for a pizza and beer than CC.

Even more bizarely I found that the worst part of the symptoms occurs AFTER I go back gluten-free...

Whilst I keep the gluten topped up pop a few immodium I have D and some abdominal pain...

In fact its pretty much like I was before being gluten-free.... generally ill but not all the time... keeping it topped up seems to alleviate the symptoms...

After I stop (usually max of 2-3 days) is when the trouble really starts...

By really starts I mean I would be bed ridden if I wasn't stuck in the bathroom...

My interpretion of this is that the worst part sets in after because it is withdrawal....and the body starts to adapt to processing the toxin....

This is (I believe) why many of us seem to react more quickly/violently once we go gluten-free....

As a parallel its why a smoker can smoke 60 a day and not vomit after the first packet when a non smoker would gag on the first one... it doesn't mean the cigarettes are not causing damage but that the body has adapted to processing the toxin and accepted it has to. Indeed the body quickly adapts to feeling normal with the toxin and abnormal without it...

I see no reason why gluten wouldn't be similar....

I'm not recommending others should do this... nor am I presuming to say they shouldn't... I'm just offering the experience I gained when this has happened.

It explains why a small CC can be worse than a big slip.... at least so its worth considering what a lot of pain and discomfort gave me in terms of experience. Its not a suggestion to try it... and its certainly not a solution.... any more than taking crack is a good solution to depression... At the point you come down its very unpleasant... (I never tried crack I'm talking about gluten in case that slipped your minds)... but I mean seriously badly unpleasant to the point people with me want to call an ambulance...

Sometimes this just happens all by itself without me having the chance to stop ....

dionnek Enthusiast
dionnek
Posted

gfp, that actually makes some sense to me :)

I too had worse symptoms after going gluten-free, and wondered how I could eat gluten for so long prior to being gluten-free but then feel WORSE after stopping gluten. Of course, realizing that, for me anyway, the worst part of gluten is the internal damage (and the possibility that if I eat gluten it might be the "last staw" that puts my body over the edge. I wish there were studies that could show what a day or 2 of gluten eating would do to a celiac (who had recovered and been gluten-free) as far as eternal damage. Of couse, we'll probably never have a study like that. It has to make you wonder though, since in Europe they've determined that a certain amount of gluten is ok - how did they determine that?!

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

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      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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