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

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.

I know what you mean! I find it very hard not to have any idea whether I have been glutened or not. There is absolutely nothing I can trace to food because I nearly always feel consistently the same. Sure, I am in constant pain from FMS and herniated discs and chronic insomnia due to so much pain but I really wish I knew if I accidentally ingested gluten somewhere along the line so I can make the necessary changes. It is very difficult. :(

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I know what you mean! I find it very hard not to have any idea whether I have been glutened or not. There is absolutely nothing I can trace to food because I nearly always feel consistently the same. Sure, I am in constant pain from FMS and herniated discs and chronic insomnia due to so much pain but I really wish I knew if I accidentally ingested gluten somewhere along the line so I can make the necessary changes. It is very difficult. :(

My daughter was recently diagnosed and had the same problem. What she did is eat a bunch of something that we knew was cc'ed and then monitored her health. She came up with what she thought were tell tale signs of glutening. Mainly her belly gets huge. She also gets really unpleasant and grumpy but that is hard to self diagnose. Now when her belly is bigger, but not huge, she figures that she has had some minor glutening. This approach has helped her to figure out her diet so that she is much improved.

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My daughter was recently diagnosed and had the same problem. What she did is eat a bunch of something that we knew was cc'ed and then monitored her health. She came up with what she thought were tell tale signs of glutening. Mainly her belly gets huge. She also gets really unpleasant and grumpy but that is hard to self diagnose. Now when her belly is bigger, but not huge, she figures that she has had some minor glutening. This approach has helped her to figure out her diet so that she is much improved.

Thanks for your advice. However, I would have a very hard time eating something that has been CC'd deliberately. We eat such an incredibly varied diet as well with a lot of exotic ingredients (some recipes I like to make contain 30+ ingredients) so it would be tough to pinpoint. I have switched to a gluten-free toothpaste and ensure my supplements and all that are gluten-free. I constantly email and/or phone companies re products. Our house is gluten-free. I have not eaten in another person's home since diagnosed and only at a few extremely trustworthy restaurants. I am so careful that I fear I'm a bit OCD on this. It is weird - I definitely do not wish I got sick but some sort of hint would help!

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My reaction comes on usually within about an hour after consuming a gluten product or cc'd product. I will start having minor siezures afterward and they will continue for a few hours. I am epileptic and had found out that part of my diagnosis has been directly related to gluten sensetivitity. I had even gone in for corrective brain surgery, but the siezures still came, just not as much or nearly as bad. I am not celiac, but I am sensetive. It has been fairly easy for us. My wife cooks mostly all of our food gluten-free, but at times makes seperate foods for family and friends that come to visit. We have seperate pots, pans and utensles for my foods. We always know what to stay away from for me. If we are not sure, I don't drive the famiy around,,,, especially the kids if they have to go somewhere.

Later,

Ray

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We eat such an incredibly varied diet as well with a lot of exotic ingredients (some recipes I like to make contain 30+ ingredients) so it would be tough to pinpoint.

You would certainly have to make a lot of changes to pin point the source of your gluten reactions.

We had to go on very simple diets for a couple of weeks to get to a baseline healthy state. Then we carefully added new items only one per week watching for gluten reactions to get to a decently varied diet. It took a long time. We still add new foods that way. The only exception is the food I grow in my own garden.

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If I eat a tiny bit of gluten - I get stomach acid that bubbles up in my throat and I can't swallow, then this kind of mucus thing where it just comes up and won't stop for hours. Its foul - and I have had it in cafes and stuff - so embarrassing.

If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like the bowel telescopes on itself like it kind of eats a part of itself. It is the most painful and scary thin I have ever been through-I have been in labour and its very similar in pain and it lasts for hours except this can kill you and usually labour doesn't :rolleyes:

But basically if I eat gluten I know it instantly. I don't think I react to anything else whatsoever.

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If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like the bowel telescopes on itself like it kind of eats a part of itself.

Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!

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Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!

The worst part is - my GI even though he is the one who knows I get intersussception wants me to do a gluten challenge - he isn't a celiac specialist type person... I'm not going to do it though. I think he wants to do it as a kind of study or something???? My GP is like "Just don't do it - it isn't worth it!"

I haven't been officially diagnosed you see- and my GI believes its imperative, my mother is celiac, my son is borderline (marsh stage 2 changes- gut issues since he was born). I was supposed to have the biopsy and got pregnant so I gave up gluten with plans to do a gluten challenge after the baby came. I had had 3 episodes of intersusseption within a year by that stage. Then about 6 weeks after giving up gluten I went to a to a vietnamese with friends - I didn't want to be the "gluten free" one so I just ordered and shared with everyone. Within half an hour I was throwing up and in agonising pain- its so bad I can't speak through it, I can't stand up I sweaty clammy and pale. I ended up in emergency. So scary.

I ended up in emergency last time I ate gluten...and I am the biggest wheat lover ever - it has taken alot (ie intersussception) to stop eating gluten. I've had that first reaction I mentioned for 12 years and suspected it was gluten for a few years but still wouldn't give it up....

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I am still trying to figure this out too after almost 2 yrs of being gluten free. However, my symptoms are fatigue, brain fog, severe bloating, muscle and joint pain, nerve issues, facial flushing, maybe rashes, headaches, chronic severe constipation. Sometimes I only feel a portion of the list, and other times I get them all. I am guessing that it also depends on how much gluten I am exposed to. Sometimes my symptoms are just too vague and inconsistent, and I really have no idea how to decipher them. I have a hard time figuring out symptoms with cross contamination. However, I do get a build up of gluten symptoms over time. Each day I feel worse and worse, until I can't function. That happened with Rice Dream milk, oatmeal and gluten free granola mix. I also get confused with other food sensitivities. I have not been officially diagnosed either, but I have the more severe symtoms of celiac disease (thyroid disease, infertility, possible DH skin rashes and other autoimmune diseases that were/are trying to emerge)... so I will just have to live my life assuming that I've got it.

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and other autoimmune diseases that were/are trying to emerge)... so I will just have to live my life assuming that I've got it.

yeah same - just waiting on my connective tissue disease results to see if they actually show up anything this time :rolleyes: ...this autoimmune stuff is sooo horrid - I hate it

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Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!

Have you heard of others? I haven't but I know they are out there because there have been studies done...It makes it scary to be honest. I am going out to dinner tonight and I am starting to feel nervous about it already....the whole accidental glutening thing..ugh!

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Hello.

I'm late to this but thought I'd throw in my two cents. I react very similarly to MargoS.; I am afraid of gluten.

I've been gluten free since 2005, am extremely sensitive (found out the hard way) and NOTHING does what gluten does to me so... if I hear hoofbeats.....

Symptoms:

severe left side abdominal pain, gas and bloating, very distended abdomen-hard as a rock. Alternating D and C, then stools similar to Margo S for days, mouth sores, joint pain and cracking, feeling like it's hard to breathe because of stomach pushing up on diaphragm, I think. Pain often worse at night and always have "gluten nightmares". Followed by fear of eating anything! Whole thing often can last a week. Not fun.

Good health to all,

lisa

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D within 30 minutes

Gut rumbles and more D throughout the day

Abdominal bloating

Urine is almost fluorescent from malabsorption of vitamins

Much more hungry

Sadness and anger

Depression

Avoid people altogether - social anxiety

Super tired and lack of strength

No motivation to do anything at all

Inability to concentrate

Dry hands and nose - flaky skin that lotion will not cure

Acne on chin and shoulders

Cold sores on tongue

Balance problems

Racing heart at times. When slower it skips beats.

Vision not as good as when feel well

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Scintilating Scotoma (Eye Blindness / Photophobia)

Phonophobia (Sound aversion / Irritation.)

Moodiness

Severe Allergies

Athsma

Memory Loss

Irrational Thinking(Poor Judgment)

Nerve pain / Neuralgia

Sinus Pressure

Toothpain

Weight Gain

Chronic Fatigue

Premature Ventricular Contraction

Tachycardia

High Blood PRessure

Strangely, I didn't notice the abdominal swelling or any IBS much, other symptoms were kind of distracting.

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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?

I absolutely have this response. It's not an early response for me, at least not that I've noticed, but it's definitely one that arrives with chronic exposure. I was undiagnosed for many years and was always extremely sensitive to those things, especially textures and itchy or tight-fitting clothing. After ten years gluten-free, I'm dealing with a major re-occurrence (long story involving cross-contamination and moving overseas), and I'm definitely very sensitive to stimulation again. I'm only wearing about 2% of my wardrobe because the rest of it makes me so flustered.

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I'm on gluten right now in preparation for testing and the super sensitivity to sound is a huge factor for me. Water running, vehicular traffic, voices over the telephone, floor boards creaking...all of them and more make me cringe.

In addition I have vertigo, balance problems and total exhaustion. If I am under flourescent lights, this seems to trigger seizure like episodes where my head starts bobbing uncontrollably.

I have gas and the rumblies but only seem to have the gut wrenching pains when I eat pizza. I do not know why it's just pizza that seems to bring on the pains.

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I have gas and the rumblies but only seem to have the gut wrenching pains when I eat pizza. I do not know why it's just pizza that seems to bring on the pains.

Are you intolerant of dairy, by any chance? A lot of us have to give it up at least temporarily. I craved cheese so badly and was happy when I was able to add it back...and my kind of pizza has lots of cheese. :P

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Are you intolerant of dairy, by any chance? A lot of us have to give it up at least temporarily. I craved cheese so badly and was happy when I was able to add it back...and my kind of pizza has lots of cheese. :P

That is a possibility that I never considered to tell you the truth. I love cheese too but had cut it out of my eating habits in the past year because whenever I would eat it, my ankles, hands and face would puff up from water retention the next day. I was assuming it was the salt though and have tried to eliminate most of salt/processed foods from my diet.

I'm glad you were able to re-introduce it back in your diet. Cheese is heaven. The funny thing is one of my most favourite meals in the past was a thick slice of hard cheese on homemade bread. Funny how life works out. :)

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I hope you are able to add it back in, too. Giving up cheese was much worse than giving up gluten. Last Jan. at 9-months gluten-free, I started to eat a tiny bit of hard cheeses (cheddar or parmesan) but I like lots of mozzarella on my pizza. :P

ETA: I did buy Lactaid milk right away although I really don't use much milk.

Edited by sa1937
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That must have been a heaven sent moment, biting into the Cheddar. :)

I kind of stopped drinking milk when I had my kids (save the milk for the kids!) and totally fell out of the habit of drinking it even after they grew up and moved away. Cheese was my only dairy source.

I'm assuming the stomach can't handle the proteins in dairy because of the damage from gluten?

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That must have been a heaven sent moment, biting into the Cheddar. :)

I kind of stopped drinking milk when I had my kids (save the milk for the kids!) and totally fell out of the habit of drinking it even after they grew up and moved away. Cheese was my only dairy source.

I'm assuming the stomach can't handle the proteins in dairy because of the damage from gluten?

I don't know if you can assume that or not. I actually have no clue.

It was sheer heaven!!! I think I was just lactose intolerant. Not sure if the casein intolerant people can add cheese back into their diet or not after they've healed. Even though I added in cheese, I just tested Haagen Daz ice cream within the last month. I really don't eat that much ice cream though. It's just nice to know I can have it even if I don't have it very often.

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I could just picture you biting into your piece of heaven.

You know, one thing (out of the many) that I'm learning is it's the small things that were once taken for granted that come to be special.

Happy cheese eating. :)

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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.

I have been diagnosed with Celiac about 6 years ago...just recently in the past three months I ate a piece of cake that was supposedly gluten free and it was total wheat flour (!) and I had the vomiting thing for hours and felt miserable and shaky for about 10 hours after.  Just the worst.  Then, yesterday I had Lay's Sour Cream and Onion potato chips and was very sick for many hours, starting with dizziness and head feeling weird.  The vomiting thing is new for me and I am usually so careful, so discouraging.  Just was looking to see if others experience the vomiting thing as well...thanks for your post, I know I am not the only one and it isn't Something Else.  Thanks!

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If I eat a tiny bit of gluten - I get stomach acid that bubbles up in my throat and I can't swallow, then this kind of mucus thing where it just comes up and won't stop for hours. Its foul - and I have had it in cafes and stuff - so embarrassing.

If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like the bowel telescopes on itself like it kind of eats a part of itself. It is the most painful and scary thin I have ever been through-I have been in labour and its very similar in pain and it lasts for hours except this can kill you and usually labour doesn't :rolleyes:

But basically if I eat gluten I know it instantly. I don't think I react to anything else whatsoever.

I've since found out that the stomach acid not being able to swallow thing is due to Eosiniphilic Esophagitis. They are co-morbid conditions, and there are a few people on this forum who also have both. 

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I was diagnosed as a celiac in 1996. (Age 50) I lost about 60 lbs. thought I was dying till Dr. found my problem, it was confirmed with all the usual test.  I went gluten-free, and my wife did too...   We became label readers...  1st.  trip to a grocery store took 2-3 hours checking things we used to buy.  We made wholesale changes in our diets.  At the time I was diagnosed, my symptoms were stomach cramps,bloating, diarrhea,gas, and Irritable disposition.  6 months into my diet, I gained back 20 lbs, and all outward symptoms were gone.  I underwent the test again One year after diagnosis I was nearly recovered.

     Over the years I have been glutened several times. I too learned to never take anyones word that something is gluten-free.

After all these years I'm not as sensitive to gluten as I once was, but I stay on my diet, and try to avoid putting myself in a situation of 

cross contamination.  I still occasionally receive a little accidental contamination, but it's not by choice...

 

Knowingly eating wheat is like playing Russian roulette with a celiacs health.  Why gamble when you know what it does to you.

(BTW:  My disposition improved when I went on a gluten-free diet.)

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