Is There A Change (increase) In Your Reaction To Gluten After Going Off Of It?

[kari]

After feeling generally sick and fatigued for a long period of time, I was told by a gi specialist that my iron was very low for no reason, my white blood cell count was out of control, and that I had the antibody for celiac disease and that more than likely, I had celiac disease. After the endoscopy etc, they told me they found only some damage and no signs of tropical sprue and that I did not have celiac disease. I did not go back to follow up after that and went through periods of feeling particulary run down and crappy, and periods of not really thinking as much about it. After feeling crappy continually for the last few months and not being able to afford to go back to the doctor, I figured, maybe the nurse practitioner at the GI office I was going to didn't know her stuff, and that if I'm having all these problems and everything else has been ruled out, it must be celiac, and I went gluten free one week ago. I've been already feeling amazing since, even haven't needed the ADD medication I have depended on for years. Today, I put a piece of my gluten free bread in my toaster which I share with 4 toast loving roomates. (I have been eating the same gluten-free bread at my mom's house, but she doesn't even use her toaster), and immediately after eating it I felt exausted, had a headache, and my stomach just kind of ached all over. This was the feeling I used pretty regulary, but not since stopping eating gluten. I had thought before toasting the bread about things I have read on here about stray crumbs, etc., so was immediately feeling this way in my head because I was thinking about it, or would it really make sense that after going without gluten, then an intolerance to it, which had seemed pretty slight in my case before, would make me feel that way immediately after only one little crumb of wheat?

I'm completely baffled by this.

[VegasCeliacBuckeye]

It is completely normal for your "glutening experience" to cause you to feel worse than before.

Mosty people will tell you that getting "glutened" creates far more problems now than before (True for me).

Go to the store and buy yourself a $10 toaster.

don't ever use their toaster again! -- It will always make you sick.

In college, I kepy my toaster in my room - LOL!

Hope you feel better -- but unfortunaltely, celiac disease is a "trial and error" condition -- it gets easier over time -- it just takes education, experience and willpower...

[penguin]

Hang on a minute...you had positve antibodies? All of them? Some of them?

And you had damage? Celiac is known (in antiquated terms) as NON-tropical sprue.

Your doc may not have had a flipping clue what they were talking about

Or if they did, the clearly did a poor job of conveying it...

And yes, a crumb can make you sick. Something gluten free that is made in the same place as something with wheat and, you can get sick.

If you feel better, keep on the diet!

[kari]

when I went back for my one rushed follow up appointment with the nurse practitioner after the endoscopy and colonoscopy, all she said was that I did not have celiac disease. I had done research and my parents had talked to people they knew who had celiac disease, and I said to the nurse "I have heard that if a person has an antibody for celiac disease then they have celiac disease" She said I had one out of two antibodies that they tested for, which meant that I probably had celiac disease, but that when they did the end/col. they only found some damage to my esophagus and stomach which appeared to be from prolonged acid reflux and stomach upset, but that the biopsies which they took found 'no tropical sprue'. It was a quick office visit and she didn't seem to want to elaborate further or offer any other explanation as to why I was too exausted and run down to go to class, or why, despite daily vitamins and iron pills, I had remained anemic my entire life, or why my white blood cell count was apparently elevated to the level that initially made the school nurse panic and get on the phone in search of the closest specialist immediately (I have school health insurance and can not see a doctor outside the school unless they send me there, and of course the school health office really only deals with the sniffles, and tylenol for headaches)

so... I figured the only way I'd know for sure was to try the diet. But it's only been a week - and since I had no damage to my insides, not prolonged horrible digestive problems (like throwing up, D, etc), and read on here how everyone reacts differently, I assumed that the intolerance was mild.

Could one crumb really immediately affect me so much that I would notice a definite reaction, even after only a week off of gluten?

I also really don't understand the toaster thing - any crumbs that fall fall to the bottom and aren't on the metal piece that holds the bread away from the edges while it cooks. so... cross contamination wise, it just means that the non gluten bread touched the same surface which gluten bread had touched at a prior time. Would this make anyone with celiac disease sick, or just if you are very sensitve?

sounds like a silly question, but I'm just trying to learn all of this and I'm so fed up and frustrated with feeling like general crap all the time. but on the other hand, I don't want to have to change my life around more than I need to to avoid it. This is all beginning to get very overwhelming and depressing.

[jerseyangel]

Yes, it really could even less than that can cause a reaction if you're sensitive. That's why we are always concerned with cross contamination. Many of us have far worse reactions now that we're gluten-free than before, and it takes much less gluten to do it. I personally have reacted to most (but not all) products made in a shared facility with wheat. That goes for soaps and things, too. Bronco gave good advice about the trial and error--keep reading here and don't hesitate to ask anything

[loraleena]

Oh yes. When I first stopped eating just wheat (because my idiot doc only told me to not eat wheat), a

couple weeks into it I decided to see what would happen if I ate wheat. I became violently ill withing 10 minutes. I ended up sick for 3 days. I never had such a severe reaction before going off it. A month later after weeks of eating spelt and kamut (told it was ok) and being nauseaous 24 hours a day, I finally found out that I needed to iliminate all gluten.