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Cross Contamination - More Sensitive After gluten-free Diet
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Hi I have been gluten free less than 2 months now and although my symptoms have definately improved I feel I'm more sensitive now than before diagnosis is this normal? Before being diagnosed with coeliacs, although constipation was bad along with stomach pain and gas diareah only occurred with consumption of beer/some spirits. However since being gluten free I am now super sensitive, the past 2 times I have eaten out in restaraunts although I have been very careful not to eat gluten I get diareah about 20 minutes after. Is it normal to be this sensitive to cross-contamination? And to have debeloped this hightened sensitivity after going gluten free. My biopsy showed almost total villous atrophy.

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Yes it is normal. Now that your gluten free when you get even the smallest amount of gluten it will cause those antibodies to flare. You need to be as careful as possible and take precautions to prevent cross contamination. Do not cook with gluten flours for others, if fact many of us find that we can't allow gluten flours to be used in our homes at all because the flour particles will be airborne for hours. Do get a dedicated gluten free toaster and replace any scratched non-stick cookware, wooden utensils, cutting boards and strainers. Try and go with as much whole unprocessed foods as you can and if you must eat in a restaurant try to go to one that is knowledgable about gluten. I hope your feeling better soon.

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This is totally normal. In my first six months of being gluten free I got sick after playing with Play Dough with my kids and making Christmas cookies, things which I was able to do on a regular basis without symptoms before going gluten free. I also reacted strongly to cross-contamination in the foods I ate; I would feel sick after eating foods with no gluten ingredients, only to call companies afterwards and find out that all of the products I reacted to were actually made on shared lines.

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Yeah, me too.

Increased sensitivity is maddening and we must be ever more vigilant about gluten.

I get sick with exteme symptoms from trace gluten where before I ate it every day. I had chronic muscle and joint pain and migraine headaches that went on for days.

Now I get those just from accidental trace gluten. Like helping sister's kids with their plates when we go to a buffet where I do not eat...just drink. But there is enough gluten around to end up making me sick. I wouldn't dare eat in a restaurant now whereas when I was first diagnosed (by me thanks to Celiac.com) I thought Oh I can do this! I'll just order meat and vegetables...but time and tide have proven no way! No Way I want to spend my birthday playing Russian Roulette with the whole next week just to eat a meal out. Ugh...after a year...I am still super-sensitive. :ph34r:

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    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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