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Nikki2777

How sensitive am I?

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I was talking to my primary care physician (who happens to be a Gastroenterologist) and described to him what has happened the few times I've been glutened since my DX about 2 1/2 years ago (we were discussing the potential impact of eating half of a non gluten-free chip)

Two days of diarrhea, general bloat for another few days, spaciness for about a week and gum pain/headache for another week or two.

He seemed surprised at the severity and said that this is a high level of intolerance.  I don't think I'm highly sensitive but I'm generally very careful about cross-contamination.  I'm just wondering how sensitive these symptoms seem to you?  How does this compare to what would happen to you if you ate half a chip (assuming you have a dx of Celiac).

Thanks.

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There is some genetic involvement with Celiac Disease that can make a person more highly symptomatic.When I had gene testing done after my diagnosis, it revealed I have a double DQ-2 and the notes on the testing results indicated that the 2 particular genes I have were associated with more severe cases of Celiac. I presented with classic Celiac........the skinny, malnourished kind.  I have been gluten-free for 10 years and although my symptoms when glutened are still pretty severe, I have noticed with healing that the duration is shorter.  I can go from being extremely sick and symptomatic to feeling almost normal again in 2-5 days. The longer lasting symptoms are the neuro ones.  The GI symptoms go away more rapidly now.  I don't know if this means we are more sensitive or that we are more symptomatic than some. People who are mostly asymptomatic still have the same damage done to their gut as we do but luckily, they don't seem to present with such severe symptoms.

I know this probably didn't answer your question all that well but it's what I've learned/observed over 10 years. What I do know is that you can heal well and gain your life back if you are careful with your food and cc issues, regardless of the hype about not healing that is all too prevalent on the internet today.  I am no spring chicken yet I am doing worlds better than I was even 5 years ago.  :)

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I have been gluten-free for two and a half years too.  My gluten-free diet  learning curve was not steep since I had been living with and preparing gluten-free food for my husband for over a decade.  In the beginning I thought I was getting glutened.  Turns out xanthan gum (a substitute for gluten in commercial baked gluten-free goods) was a big problem for me (not for my husband).  I had an intolerance to it.  I did well until July 2015.

Something got me.  Not sure what it was  but I suspect two products that my husband NEVER consumes.  I most likely got glutened again on vacation a week or so later (cross contamination).  Although I had  anemia  as my main symptom when I was initially diagnosed (Marsh Stage IIIB), this time I had vomiting, diarrhea, fatigue, anxiety, the works!   I became dairy intolerant again too.  I went to my GI a month later and my antibodies were higher than when I was diagnosed.  He thought I had SIBO, but it turns out I simply had been glutened.

it took me two months to feel better and another to consume dairy.  I lost weight fast too during this time. I think everyone is different in how they heal from a glutening.  My hubby is just ill for a few days.  I also think that I deveoped some new issues as a result of my glutening (episodes of vomiting, ab pain,  hives/rash (not DH), itching etc.). I will be seeing my doctor in a week or so.  Most likely some allergies or a histamine intolerance.  Just one more thing to deal with!  


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I was talking to my primary care physician (who happens to be a Gastroenterologist) and described to him what has happened the few times I've been glutened since my DX about 2 1/2 years ago (we were discussing the potential impact of eating half of a non gluten-free chip)

Two days of diarrhea, general bloat for another few days, spaciness for about a week and gum pain/headache for another week or two.

He seemed surprised at the severity and said that this is a high level of intolerance.  I don't think I'm highly sensitive but I'm generally very careful about cross-contamination.  I'm just wondering how sensitive these symptoms seem to you?  How does this compare to what would happen to you if you ate half a chip (assuming you have a dx of Celiac).

Thanks.

I'm of the opinion that the symptoms of celiac disease become much more noticeable when we are glutened while healthy.  Those migraines, bloating, pain, fatigue, and bathroom trips are noticeable when we've been normal for a while.  It can wreck a few weeks of our lives.

That doesn't sound like a high level of intolerance.  It sounds like celiac disease.  Some of us have more severe symptoms than others, but virtually all of us will experience an autoimmune attack if we eat that crumb of gluten (it often gets worse with a greater exposure).

I have celiac disease and was last glutened at Xmas last year.  I'm guessing a crumb at a buffet got me.  I was tired for about 10 days. Bloated for about a day, had a migraine for about 2 days, became constipated, and had an autoimmune flare up of arthritis. I do not consider my symptoms to be severe but rather typical.  There are celiacs who would be in bed for days or even hospitalized after that.  That doesn't mean they are more sensitive, but rather that their symptoms are more severe than mine.  Then there are the few who would get no obvious symptoms but their anemia could have come back or their osteoporosis may have been made worse.

Edited by nvsmom

Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

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Even doctors can be skeptical about the effect of "just a little gluten."  It's ignorance!  Even if you didn't have the overt symptoms, your intestines are damaged by even a few crumbs.  

Ignore the skeptics and be smart -- stick to an absolute gluten-free diet and spare yourself the "few days" of symptoms -- more importantly, spare yourself the specter of more intestinal damage.

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