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What Is Your Reaction To Gluten?


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#1 T.H.

 
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Posted 19 February 2011 - 12:03 AM

I know that we celiacs often have other sensitivities/allergies, and as a sensitive celiac, a lot of times I've been told that I'm likely reacting to something else and thinking it's gluten. Because a lot of things cause gut reactions.

So here's my question - for how many of you is that a possibility? Do you have reactions to gluten that you never get with anything else, or do a lot of your reactions overlap?

For my daughter, it's a definite possibility at times. She has gut pain with gluten, and seems to have gut pain with fructose and potentially nightshades. She says they feel different, but she's young and we're still trying to figure it out. When she REALLY gets glutened badly, it's distinct, with vertigo and shaky limbs showing up, huge anxiety attacks hours later. But low gluten cc is harder to pin down. So for her, I am always wondering what, exactly, is giving her trouble.

For me, it's so distinct I have yet to find another reaction that comes close, because I actually don't get a gut reaction at all from gluten. If I've been cc'd for a week or so (vacations, oy), I get the big C that gets worse and worse. But otherwise, I get big doses of vertigo, difficulty thinking, fever, foggy headed feeling, and aches and pains like I've got the flu. Nausea and vomiting only when the vertigo gets really bad.

With my few allergies/intolerances, I get a sore throat, gut pain, the big D, hives sometimes, headaches.

It took me a bit to figure it all out, because I have celiac disease AND I'm mildly allergic to wheat, too. And at times, the headache/vertigo thing will feel the same for a few minutes, so it was a bit confusing, but as I pay more attention, there's always consistency. The vertigo goes along with the flu and aches and pains. The sore throat and gut pain go along with the other symptoms. And sometimes, there's both, which I assume means I got a double whammy.


How about you all? Do you have distinct symptoms to gluten that never seem to happen in the presence of other intolerances/allergies? DH, for example? Or do the symptoms overlap and make it more difficult to determine what exactly you are reacting to?
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 Marz

 
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Posted 19 February 2011 - 05:26 AM

Some symptoms are similar, some are distinctive. I get an itchy rash from gluten, DH-like I guess.

My other food intolerances usually cause nausea after eating, maybe a sore stomach for 30min or so. And then sometimes d a day or two later - the difference with the d is that I feel fine before/afterwards.

Gluten - well the usual stomach problems, sometimes I have a very distinctive "spacey" feeling after eating cc'd items. Sometimes I get anxiety/panick attacks a few hours later, but not every time. Gluten symptoms are definitely not always the same - sometimes I don't even get the itchy rash, I guess it depends on where the gluten goes first?

I sympathise with your daughter though - I also find it hard to separate gluten contamination from new food intolerances.
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#3 twe0708

 
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Posted 19 February 2011 - 05:50 PM

What great timing! Today I went to downtown St. Pete and had lunch from a place that said gluten free - vegan and organic foods. I ordered lunch and asked at least three time about gluten and how I would get sick. The guy said "oh no, I wouldn't want to get sick and wouldn't want to get others sick". I was really sick an hour later!

With me it's like the four hour flu - vomiting, body aches, diarhea, and in bed for the next 3 to 4 hours being tortured. I would love to have some of the other symptoms that others get - rash, irritable, or even just diarrhea. Not sure why I get hit so hard when I do but it really is bad. , I only get hit like this if the food I eat contains wheat. If it's just cross contamination, then I only experience bloating for about 20 minutes. If I lay down it spreads out my insides and relieves the pressure. :rolleyes: I don't know why, but laying down always helps.
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#4 dilettantesteph

 
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Posted 20 February 2011 - 05:38 AM

I don't have very much in the way of other intolerances. I have discovered one to Kumquat skin though. Glutening leads to a big range of symptoms GI as well as neuro. With the Kumquat skin I just get the GI issues. It did confuse me for a little while though. I find that glutening from smaller amounts affects me differently than larger amounts of gluten. The little amounts build up after a few days or weeks to be just like the big ones. I'm glad that I have figured that out so that I can get rid of the thing that is getting me before my symptoms get too serious.
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#5 mushroom

 
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Posted 20 February 2011 - 01:15 PM

Just to make matters confusing, my reactions have changed over time. Gluten used to equal diarrhea, bloating, insomnia, vaso-vagal syncope - now it's nausea and retching. Lactose was diarrhea, stomach cramps, gas., - healed from that now. Corn was and still is (not that I eat it) bloating, gas, diarrhea, vaso-vagal syncope. Other intolerances were all skin related - now bloating, with atrial fibrillation. Medication is now controlling the a-fib :D
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 Judy3

 
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Posted 20 February 2011 - 05:32 PM

I just found out my reaction to gluten for the first time today since going gluten free. I went to a party, brought my own food and the hostess guaranteed me that the chicken wings had no gluten she checked everything... uh huh! Right now I'm in severe pain under my left ribs, feel like I'm going to hurl, and want to sleep. I will NEVER again take someone's word for it. She said she called the store she bought them at and had them read the ingredients to her to be sure and I think someone missed something.

OWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWW
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#7 dilettantesteph

 
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Posted 21 February 2011 - 05:23 AM

I will NEVER again take someone's word for it.OWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWW

Me too. Sorry. Hope you feel better soon.
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#8 Mish-Mash

 
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Posted 18 March 2011 - 12:07 PM

I just found out my reaction to gluten for the first time today since going gluten free. I went to a party, brought my own food and the hostess guaranteed me that the chicken wings had no gluten she checked everything... uh huh! Right now I'm in severe pain under my left ribs, feel like I'm going to hurl, and want to sleep. I will NEVER again take someone's word for it. She said she called the store she bought them at and had them read the ingredients to her to be sure and I think someone missed something.

OWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWW

It sucks when someone tells you that something is gluetn free when it's not! I had that happen to me on holiday (I've been gluten free now for 18 months) and I get such severe reactions, diarreah/constipation, hives, joint pain, uncontrollable sleep, uti's, memory loss, and I find it really hard to see and hear anything for about 2 weeks afterwards, I was in bed on holiday for about 2 weeks! :( my family was so bummed aswell! Feel better :)
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#9 Prairenurse

 
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Posted 22 April 2011 - 12:42 PM

I have been gluten free since Spring 2007. My daughter is visiting and said she would make some haystack cookies if I got the ingredients. I thought I would try some bulk oatmeal and coconut, hoping they would not be cross contaminated. Well, not a good move! End of this batch of cookies for me! I have been exhausted, irritable, aching, brain fog, stomach cramps, some diarrhea and my day is shot! I hope it is just one day shot! I won't try that again!
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#10 jolie.fleur.peu

 
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Posted 24 April 2011 - 01:25 AM

I just found out my reaction to gluten for the first time today since going gluten free. I went to a party, brought my own food and the hostess guaranteed me that the chicken wings had no gluten she checked everything... uh huh! Right now I'm in severe pain under my left ribs, feel like I'm going to hurl, and want to sleep. I will NEVER again take someone's word for it. She said she called the store she bought them at and had them read the ingredients to her to be sure and I think someone missed something.

OWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWW



I don't even take my parents word for it. I triple check every thing I eat. It's just not worth it to be sick
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#11 sb2178

 
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Posted 24 April 2011 - 09:31 AM

gluten = fat malabsorption

pain and reflux can be from too much peanuts and dairy or any gluten but only gluten yields fat malabsorption. other symptoms are primarily gluten-based, but that is the really easily identified key.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#12 Goof

 
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Posted 26 April 2011 - 12:44 PM

My symptoms and the severity tend to depend on how much gluten. Like you said, I KNOW when I'm glutened. Usually there's a huge mood swing, or I'll get tired very suddenly, depending on the amount of gluten. Every time, I will get a pain in my stomach, which then will travel through my upper abdomen. A few hours later, I'll get some nasty acid reflux. I used to have, as someone on here mentioned, the panic attack in the middle of the night, with really bad nausea. But I haven't had one of those since I went gluten free.

I'm only two months gluten-free, but I think I'm most of the way through the trial and error phase - woot!
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#13 kim:)

 
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Posted 26 April 2011 - 08:49 PM

I have been gluten free for seven years and I will have an reaction about 5 to 10 minutes later even with little crumb sometimes and I will start with a weird cough and my stomach hurts extremely bad as well as followed by of course time in the bathroom and I also get very weak and sleepy. But the longer on the diet the smarter you get lol
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[color="#9932CC"]Kim:)

#14 naiiad

 
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Posted 29 April 2011 - 08:18 AM

I have mouth sores develop within 45 min of contamination, followed by cramping and abdominal pain, sometimes D, then within a few hours light-headedness, weakness, muscle weakness and pain, exhaustion, sometimes fever, anxiety, cloudy headedness, and within the next 24 hours I develop a yeast infection, sometimes DH, my scalp swells and larger than normal amounts of my hair starts to fall out and I usually develop an intolerance to soy and lactose within a few days following a reaction. The exhaustion and pain starts to subside within a week, and my hair loss and womanly issues usually start to dissapear after two. I can usually enjoy lactose and soy comfortably after about a month. Its no fun!
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#15 shadowicewolf

 
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Posted 12 May 2011 - 09:13 PM

Pain in abdomen
D or C depending or even worse alternating ><
Shaking
Dizzyness
Chest problems
Throat problems
headaches
tiredness
Anxiety
Panic attacks
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