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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Is Your Reaction To Gluten?
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50 posts in this topic

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

Me too. Sorry. Hope you feel better soon.

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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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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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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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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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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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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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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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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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You know, we've got a symptom now that I never realized WAS a symptom, but now I'm finding more people who have this as well: hyper-sensitive senses. Anyone else get this?

Essentially, within about 24 hours, sounds are more irritating/loud. Certain people's high pitched voices make me want to yell at them. Taste can be off, where sour or bitter is a stronger flavor for me. Lights are too bright or hurt my eyes. Unpleasant physical touch is more painful than normal. Even smells can be unpleasant or 'weird.'

Turns out, my daughter is the same way! Both of us always used to have trouble with crowds, where the sounds would start to feel overwhelming very quickly, and I only realized recently that this is now GONE when we both got glutened and all of a sudden started having trouble again for a few days.

Who knew this was a gluten issue? I swear, learn some new weird thing every day, LOL.

Shauna

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You know, we've got a symptom now that I never realized WAS a symptom, but now I'm finding more people who have this as well: hyper-sensitive senses. Anyone else get this?

Essentially, within about 24 hours, sounds are more irritating/loud. Certain people's high pitched voices make me want to yell at them. Taste can be off, where sour or bitter is a stronger flavor for me. Lights are too bright or hurt my eyes. Unpleasant physical touch is more painful than normal. Even smells can be unpleasant or 'weird.'

Turns out, my daughter is the same way! Both of us always used to have trouble with crowds, where the sounds would start to feel overwhelming very quickly, and I only realized recently that this is now GONE when we both got glutened and all of a sudden started having trouble again for a few days.

Who knew this was a gluten issue? I swear, learn some new weird thing every day, LOL.

Shauna

I have that issue, except it isn't related to gluten sadly :( Its part of my other 'host' of problems. I'm hoping once i get fully on the gluten free diet (as i have been for 2 weeks) it will mellow out some. It stinks really really bad ><

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Unlike you all, I do not know when I'm glutened. I seem to have no distinct symptoms that I can trace. I have atypical celiac disease, the kind without the typical GI symptoms, but rather other types of problems. I think it must be a really delayed reaction. And I have no idea how delayed. I just get worse gradually, sometimes over a period of months. My main problems are fatigue, sleep problems and some weight loss. I also have problems with nose bleeds, bruising, brain fog, anxiety, depression, sinus pressure and various other things. Although I'm not sure whether these problems are part of my celiac disease or are something else all together.

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Unlike you all, I do not know when I'm glutened. I seem to have no distinct symptoms that I can trace. I have atypical celiac disease, the kind without the typical GI symptoms, but rather other types of problems. I think it must be a really delayed reaction. And I have no idea how delayed. I just get worse gradually, sometimes over a period of months. My main problems are fatigue, sleep problems and some weight loss. I also have problems with nose bleeds, bruising, brain fog, anxiety, depression, sinus pressure and various other things. Although I'm not sure whether these problems are part of my celiac disease or are something else all together.

Nose bleeds can be fixed, normally they are caused by veins getting to close to the inner surface of the nose. An ENT fixed my bad nosebleed problem by cartarizing it.

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I do get the hypersensitive senses. It took me quite awhile to notice that it came from gluten.

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I know when I've been glutened. I get a severe pain in my GI tract- it usually starts about 40 minutes to an hour after eating, and begins underneath my breast bone and radiates all over. It feels like I ate a bunch of glass. It hurts. It then moves lower into my stomach, upper and lower intestines, with a dull, but presistent radiating pain, I feel bloated and very unwell. I then have copious, frequent large, pale (almost yellow) stinky stoools for days afterwards. I notice that it takes about 7 full days before I feel back to normal again. I think the pain in the intestines makes me feel generally maliase (and depressed- that I've been glutened again!!!) and will I ever be free of this. Its mostly hidden gluten in sauces that I forgot to be vigilant about when eating out. Once I was also made a gluten free sandwhich from a yoga retreat that were very sensitive to gluten-free diets. I ate the sandwhich and commented on how darn GOOD the bread was-it was like "real bread." One half hour later I was in severe pain. I went back the next day to inquire, and yes, they gave me regular bread. I blamed myself for trusting them-and not triple checking. And if its too good to be true- it probably isn't gluten-free bread!

I also have been tested for IgG food allergies and was told I was allergic to almost everything. But, I don't seem to have any symptoms after eating non-wheat/gluten things...I wonder- does anyone test positive for food intolerences (besides gluten) and yet have no symptoms? I wonder if its just my leaky gut letting food in my bloodstream, and my body building antigens to them-and yet I have no symptoms. Only to Gluten...?????

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I also have been tested for IgG food allergies and was told I was allergic to almost everything. But, I don't seem to have any symptoms after eating non-wheat/gluten things...I wonder- does anyone test positive for food intolerences (besides gluten) and yet have no symptoms? I wonder if its just my leaky gut letting food in my bloodstream, and my body building antigens to them-and yet I have no symptoms. Only to Gluten...?????

I did an online search and those tests aren't terribly accurate, but don't take my word for it, do your own. Elimination diets are supposed to work better to determine food sensitivities. My son tested negative for everything, yet when he eats walnuts his tongue swells up. His doctor even told us that the tests weren't accurate.

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I also have been tested for IgG food allergies and was told I was allergic to almost everything. But, I don't seem to have any symptoms after eating non-wheat/gluten things...I wonder- does anyone test positive for food intolerences (besides gluten) and yet have no symptoms? I wonder if its just my leaky gut letting food in my bloodstream, and my body building antigens to them-and yet I have no symptoms. Only to Gluten...?????

Yeah, when a result like that comes up, I tend to doubt it, too. The tests just aren't that accurate when it comes to predicting an allergy or food problem.

As I understand it, elevated IgE indicates an allergy that gives the hives/anaphylactic reaction if it gets bad enough. A signficant number of people with elevated IgE to a certain food have elevated IgG to that same food, so that CAN indicate an allergy from that perspective - but not all people have this. And some people have other problems with foods that they have elevated IgG to, even if the IgE is normal, but some don't.

So best I can tell, they check for elevated IgG, but this should really only be used to give you an idea of potential problem foods, because doctors really don't understand a lot about elevated IgG yet. They've got a fuzzy picture that it means something, but it's more complex that just A=B, you know?

shauna

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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!

The mouth sores are a good sign for me. My other gluten symptoms are the same as corn, and maybe nightshades (joint pain mostly), but I think only gluten makes those huge blood blisters appear on my tongue, within seconds of exposure.

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I'm relatively new to this, but for the most part, immediate symptoms are gas and a lot of it. The other symptoms, brain drain, joint pain, fatigue don't seem to happen unless I eat quite a lot of gluten. I'm still trying to figure out where I stand on this gluten sensitive thing.

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