Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

First Time Poster/my Story

winter-warz

Recommended Posts

winter-warz Newbie
winter-warz
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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:  Open Original Shared Link

winter-warz Newbie
winter-warz
Posted
  • Author

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:  Open Original Shared Link

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. 

nvsmom Community Regular
nvsmom
Posted

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.

mushroom Proficient
mushroom
Posted

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!)

winter-warz Newbie
winter-warz
Posted
  • Author

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.

winter-warz Newbie
winter-warz
Posted
  • Author

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: Open Original Shared Link

 

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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: Open Original Shared Link

 

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".

winter-warz Newbie
winter-warz
Posted
  • Author

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".

kareng Grand Master
kareng
Posted

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.
kareng Grand Master
kareng
Posted

I think your article may be confusing or even wrong.

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

Open Original Shared Link


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:

 

Open Original Shared Link

mushroom Proficient
mushroom
Posted

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.

winter-warz Newbie
winter-warz
Posted
  • Author

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.

mushroom Proficient
mushroom
Posted

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.

winter-warz Newbie
winter-warz
Posted
  • Author

Got it now. Thanks for the info.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.