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What Is Your Reaction To Gluten?


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#16 T.H.

 
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Posted 12 May 2011 - 09:59 PM

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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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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#17 shadowicewolf

 
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Posted 13 May 2011 - 05:44 AM

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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#18 Coolclimates

 
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Posted 13 May 2011 - 07:31 PM

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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#19 shadowicewolf

 
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Posted 14 May 2011 - 05:49 PM

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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#20 dilettantesteph

 
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Posted 15 May 2011 - 10:44 AM

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

 
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Posted 24 May 2011 - 06:12 PM

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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Vegetarian since 1993; 12/31/2010 Sudden onset sensitivity to gluten
TTG Antibody, IGA >100
Gliadin Antibody (IGG) 31
Gliadin Antibody (IGA) >100
Endomysial AB(IGA) 1:320
HLA-DQ2 Positive
HLA-DQA1* 02
HLA-DQA1* 05
HLA-DQB1* 0201
HLA-DQB1* 0202

#22 dilettantesteph

 
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Posted 25 May 2011 - 03:32 AM

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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#23 T.H.

 
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Posted 25 May 2011 - 10:38 AM

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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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


#24 Goddessheart

 
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Posted 05 July 2011 - 04:09 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!


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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Sick since 1996
Really sick since 2004
Gluten free and a lot less sick since Apr 2008
Also reacting to corn, oats, casein and possibly nightshades and other grains
SAD and tendency to depression that worsens if I go low carb though the hypoglycemia gets a lot better
Only carb I know I'm safe with is sweet potatoes.
Aaaaargh!!!

#25 HelenaHandbasket

 
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Posted 13 July 2011 - 05:40 AM

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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#26 love2travel

 
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Posted 13 July 2011 - 12:59 PM

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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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#27 dilettantesteph

 
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Posted 14 July 2011 - 04:44 AM

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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#28 love2travel

 
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Posted 14 July 2011 - 11:40 AM

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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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#29 RacerX35

 
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Posted 14 July 2011 - 03:56 PM

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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#30 dilettantesteph

 
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Posted 15 July 2011 - 05:39 AM

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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