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Long Time Celiac But Experiencing New Problems Need Some Guidance


swatson

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swatson Rookie

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

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Merika Contributor

Hi,

I don't get the skin stuff. I do get stomach problems, nausea, anxiety and fatigue. And the symtpoms follow a predictable pattern day by day after the event, like you said.

Sorry you've been glutened/soyed. :( That sucks. I've been gluten-free for 2 years, and done really really mess-up free for the last 1 1/2 yrs, until we had a little get-together with some neighbors who brought a pie, and I was careful, but there must have been some cross-contamination because both ds and I got sick.

Merika

hope you're feeling better soon

PS. my son gets tiny skin bumps when he eats eggs...

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CeliaCruz Rookie

I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

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Carriefaith Enthusiast
About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.
Those symptoms are very similar to mine. I also get a rash/hives, severe stomach pain, depression, increased anxiety to the point where I get heart palpitations, and I also get GI problems. I actually just had a mild gluten reaction this week and I got a rash/hives over most of my legs. The rash was hot after being outside in cold temperatures and after a shower.
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Rusla Enthusiast
I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

I get the same thing and my dermatologist said the exact same thing. I told him to humor me and do a skin biopsy and it came back positive. Do yours itch and you get a rash with them? Mine only happen when I have been glutened.

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luvs2eat Collaborator

No rashes here... but I'm experiencing similar "attacks" (all intestinal) after years of being fine. I think I've gotten quite careless and have been accidentally glutened several times in the past month. For example... I JUST learned that many of the light sour creams have modified food starch... I've NEVER even looked at the label, cause how would wheat, etc. go in sour cream???

I am back to reading EVERY SINGLE LABEL EVERY SINGLE TIME. When did I become so confident and stop doing that anyhow??

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swatson Rookie
hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

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traveljunkie Rookie

Hello swatson,

I have a similar reaction as yours...my ears get red hot too! Then I break out in a rash and diarrhea typically the next day. I must admit I ate gluten knowingly as well in the past few weeks. (cheese bread and a piece of cake) The next day I definiatly had brain fog...couldn't think of the right words to say! :(

The only time rice bothered me was when I was really sick and didn't know what was causing it. Everything bothered me, but now rice is a staple in my diet. I have heard that it can bother some people, everyone is different and if your intestines are irritated, it's more likely you'll be more intolerant to a lot of different foods.

Charlene

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Pegster Apprentice

I also get the bumps (like little blisters for me) when I'm glutened. I have definitely been diagnosed with DH so I always just assume that's what it is. I have been gluten-free for nearly two years and it always seems to be a restaurant that messes me up. I have also had the red ear thing, but I never associated it with gluten! Hmmm.

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