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First Time Poster/my Story
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15 posts in this topic

Hi,

 

My name is Darren, and I'm 32. I just joined today and am hoping to share my story and get feedback from others. I have always experienced jaw pain and tightness in my jaw and face. I wear a mouth guard at night to offset the damages caused by grinding and clenching while sleeping. I have also always suffered from extremely awful hangovers. The hangovers seem to last for 4-5 days with little change in intensity regardless of intake. I no longer abuse alcohol in an effort to improve my health and attitude but still suffer from nearly constant headaches. I also suffer from canker sores. They develop on my tongue making it difficult to talk sometimes. I rarely seem to have a break from them and have them nearly all the time. Recently, I have noticed oral thrush also.

 

Last night, I ate a bunch of tortilla chips. My mouth started to burn. My tongue is still white and my mouth is completely dry. My head aches terribly and my jaw is throbbing. I never considered an allergy to be the source of my issues until just recently after doing some research online. Looking back...I tend to develop almost immediate headaches and a dry mouth when eating or drinking beer. I no longer drink beer but still experience these symptoms. I am also always exhausted and have dark circles under my eyes. I just want to life a happy and healthy life. I thought that eliminating harmful things like alcohol and smoking would assist with achieving a healthier sense of well-being but this has not been the result. Is Celiac disease or a gluten allergy to blame? What do I do and where do I go from here? I would gladly follow a strict gluten-free diet if it meant the end of my issues and overall unhappiness. 

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Welcome to the board, Darren.

 

You could be on to something in casting the blame on gluten.  Fatigue, circles under the eyes, headaches/migraines, have all been experienced by those intolerant to gluten.  Also jaw problems, canker sores in the mouth, problems with oral thrush.  The way to find out is to ask your primary care physician to run a celiac panel of blood work on you, which consists of the following tests:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

The first two tests are older tests and it doesn't much matter IMHO if s/he doesn't order those, but the last four(five) are important, especially the total serum IgA which validates the results of the other tests.  The Deamidated Gliadin Peptide tests are the newest and most sensitive and specific to celiac disease. 

 

Do be aware that there are hundreds of symptoms associated with gluten intolerance and very few people, and most lamentably very few doctors, are aware of most of them, so you will have to be insistent and not let your concerns be pooh-poohed by a doctor who learned in med. school 30 years ago that celiac is a very rare disease found in young children who exhibit failure to thrive.   While this is indeed one manifestation, it barely scratches the surface.  He may also claim that you have to have digestive complaints to be celiac, but this is not true either.  Some people have only neurologic symptoms, and some have only the skin manifestation of Dermatitis Herpetiformis (DH).    So make sure your concerns are taken seriously. 

 

When you get your results if you care to post them on the board we would be happy to go over them with you. :)

 

ETA:  The list here gives some idea of the range of celiac symptoms:  http://www.recognizingceliacdisease.com/21.html

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Welcome to the board, Darren.

 

You could be on to something in casting the blame on gluten.  Fatigue, circles under the eyes, headaches/migraines, have all been experienced by those intolerant to gluten.  Also jaw problems, canker sores in the mouth, problems with oral thrush.  The way to find out is to ask your primary care physician to run a celiac panel of blood work on you, which consists of the following tests:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

 

The first two tests are older tests and it doesn't much matter IMHO if s/he doesn't order those, but the last four(five) are important, especially the total serum IgA which validates the results of the other tests.  The Deamidated Gliadin Peptide tests are the newest and most sensitive and specific to celiac disease. 

 

Do be aware that there are hundreds of symptoms associated with gluten intolerance and very few people, and most lamentably very few doctors, are aware of most of them, so you will have to be insistent and not let your concerns be pooh-poohed by a doctor who learned in med. school 30 years ago that celiac is a very rare disease found in young children who exhibit failure to thrive.   While this is indeed one manifestation, it barely scratches the surface.  He may also claim that you have to have digestive complaints to be celiac, but this is not true either.  Some people have only neurologic symptoms, and some have only the skin manifestation of Dermatitis Herpetiformis (DH).    So make sure your concerns are taken seriously. 

 

When you get your results if you care to post them on the board we would be happy to go over them with you. :)

 

ETA:  The list here gives some idea of the range of celiac symptoms:  http://www.recognizingceliacdisease.com/21.html

Thanks for all the info. I appreciate it. I read another thread stating that gluten intake should not be stopped prior to testing. Is it common for individuals to cut out gluten initially in an attempt to self diagnose? I would like to simply stop consuming gluten and see the results prior to getting tested. 

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Welcome to the board.  

 

The problem with stopping gluten is that you have to restart eating it for a month or two in order to get accurate blood test results. It's possible that you will feel better in a couple of weeks if you stop eating gluten now, but you have to start eating it again, and feeling poorly, for weeks in order to have accurate tests... and some people find their reactions to gluten become worse after being away from it. It can be a pretty unpleasant time.

 

I think the simplest way is to test now because you've been eating gluten, and then go gluten-free when testing is done. If you have positive tests then you know you have celiac and need to eat gluten-free for life. If you have negative tests, then you could have non-celiac gluten intolerance (NCGI) and it is at that time that you would want to give the gluten-free diet a trial of 4-6 months.  You really need to give the diet a few months to get all the benefits. For example, my migraines didn't go away until I was about a month into the diet - in fact they were worse for the first couple of weeks when I had a withdrawl of sorts.  

 

If you decide to give the diet a try before being tested (which I advise against but that's just my opinion) just make sure you give it a few months before deciding if it has helped. Many celiacs find they need to drop dairy for a few months too before they start feeling better... something to consider.  Also, a food/symptoms journal is also helpful to keep track of how you feel.

 

Good luck and best wishes.

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Thanks for all the info. I appreciate it. I read another thread stating that gluten intake should not be stopped prior to testing. Is it common for individuals to cut out gluten initially in an attempt to self diagnose? I would like to simply stop consuming gluten and see the results prior to getting tested. 

 

The problem with doing that is that often after stopping gluten, if it is your problem, you suffer much worse symptoms when you resume eating it.   Yes,it is a common thing to do but one a lot of people regret because they really want the diagnosis and cannot bear to eat gluten again for long enough to make the testing valid.  I would get tested first, and even if the results are negative, cut out gluten afterwards.

 

(As Nicole said while I was keying my response!)

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Thanks for the advice. I will hold off on starting a new diet for now until I can get tested. Unfortunately, the doctor can't see me for a few weeks. I considered getting tested elsewhere but don't believe my insurance would cover it without an intial consultation.

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Also, Mushroom, I read somewhere that a tTGA test will identify a gluten allergy. I did not see this test listed in your list or tests. Is this one also recommended?

 

Here is where I saw this: http://www.livestrong.com/article/517996-if-i-have-gluten-intolerance-but-not-celiac-disease-do-i-have-to-be-just-as-strict-with-my-diet/

 

I'd like to determine if I have a gluten intolerance even if I come back negative for Celiac.

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Also, Mushroom, I read somewhere that a tTGA test will identify a gluten allergy. I did not see this test listed in your list or tests. Is this one also recommended?

 

Here is where I saw this: http://www.livestrong.com/article/517996-if-i-have-gluten-intolerance-but-not-celiac-disease-do-i-have-to-be-just-as-strict-with-my-diet/

 

I'd like to determine if I have a gluten intolerance even if I come back negative for Celiac.

She did have that one on the list. It is a test for Celiac disease not a wheat allergy. celiac Disease is not a " gluten allergy".

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I am aware that Celiac Disease is not the same thing as having a gluten intolerance. I'm not sure how you came to the conclusion that I believed that they were the same thing.

 

And I did not see tTGA on this list...are you saying that a tTGA test and a tTG IgA test are the same? Please clarify.

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

She did have that one on the list. It is a test for Celiac disease not a wheat allergy. celiac Disease is not a " gluten allergy".

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I am aware that Celiac Disease is not the same thing as having a gluten intolerance. I'm not sure how you came to the conclusion that I believed that they were the same thing.

You said you wanted a test for a gluten allergy? I tried to explain that Celiac disease is not an allergy to gluten. Sometimes it's referred to that way. But its not a "gluten allergy". You can have a wheat allergy with or without Celiac Disease. I'm not sure how they test for the allergy or how reliable it is. My BIL has a wheat allergy but has tested negative for Celiac. He knows its a wheat allergy because he gets stuffed up and his tongue swells if he eats more than a tiny amount of wheat. More classic allergy symptoms. I believe he reacted to it in an allergy test, too but I don't know what one.
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I think your article may be confusing or even wrong.

Here is some info from actual medical centers that treat Celiac.

http://www.cureceliacdisease.org/archives/faq/what-is-the-difference-between-gluten-intolerance-gluten-sensitivity-and-wheat-allergy


I'm trying to find the links to say that there are no valid tests for gluten sensitivity that is not Celiac

 

 

Here is one:

 

http://www.cureceliacdisease.org/archives/category/faq-gluten-sensitivity

Edited by kareng
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And I did not see tTGA on this list...are you saying that a tTGA test and a tTG IgA test are the same? Please clarify.

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Yes.

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Ah, I see. I was under the impression that an allergy could be identified via testing based on that website's information. To clarify...testing can reveal Celiac but not an allergy which are commonly self-diagnosed based on trial and error experimenting by the individual? Thanks.

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A wheat allergy can be tested for (although not using the celiac tests); a 'gluten' allergy cannot.  It is possible to have both gluten sensitivity/celiac disease AND a wheat allergy.

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