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Gluten Challenge: How Long To Do One Before A Test

carisima

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carisima Newbie
carisima
Posted

I really need some advice regarding testing.

 

I got up the courage to be tested for Celiac Disease. I'm not sure that I have it, to be honest. Up until I year ago, I never suspected that I could have an intolerance to wheat. Doctors had always diagnosed me as having IBS, and tried to convince me that my severe digestive symptooms (the extreme gas, bloating, diarrhea, etc;) were the result of my anxiety disorder. For years, I believed them, and thought I was crazy, and blamed myself. I spent years in psychotherapy and two years on psychotropic drugs they ordered for me to alleviate my "panic attacks". Nothing worked.

 

My really bad stomach symptoms began in college, but they've only gotten worse. I cut out dairy, saw no change. And it seemed like every meal I ate made me sick. I was going to the bathroom 12 plus times a day (sorry if TMI), and sneaking naps at work during lunch time to function through the rest of the day.b

 

Doctors gave me so many pills to alleviate the gas and diarrhea, but nothing seemed to help the symptoms. I was desperate, so a year ago, I went on the Specific Carbohydrate Diet to heal my digestive complaints. For the first time, all the bad symptoms began to dissipate, and I felt better.  It's a diet where you have to read labels, and I make almost every meal from scratch. After months of being strictly grain free, I decided to use a topical lotion -- Aveeno -- with oats in it, not thinking anything of it. Then, my skin broke out...and I got sick. It was then that I thought, maybe I could be gluten intolerant. It was only until I decided to research celiac disease (which I always thought was a gluten allergy) that I could have it.

 

This week, I got up the courage to finally speak to a GI doctor to be tested for celiac disease. Right now, I'm not sure what to do. He didn't seem to take me seriously. He spent less than five minutes talking to me, then asked me why did I believe I had celiac disease. When I attempted to tell him he kind of brushed me off. He told me that it could be small bacterial overgrowth, or a really challenging case of IBS.

 

He then said that I should be tested right away for celiac disease. I said that wouldn't that give a false negative, since I have been strictly grain free for eight months (I had to talk to his nurse to relay this information to him). He basically said, eat wheat lightly for a week, and then get tested. When I asked -- didn't I have to eat gluten for a month to build IGA antibodies (not sure if this is right), he told me not to believe everything I read on the Internet.

 

I really want the truth, and don't want to cut corners. I've started eating wheat again (so far, so good) but, a little gassy :(. But, I'm discouraged, really. I've gone throught this so many times with doctors who don't take my issues seriously. I would change doctors, but I seriously don't want to wait, and get testing process over with, since I already had to wait a month to see this specialist.

 

Should I do a gluten challenge for only a week, then be tested, or wait the full month (of eating wheat) then be tested for an accurate result, since I had been wheat free for a year.

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kareng Grand Master
kareng
Posted

This is reliable info from the Internet. You might need to print it and show it to him. This is from doctors that treat and research Celiac disease.

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carisima Newbie
carisima
  • Author
Posted

This is reliable info from the Internet. You might need to print it and show it to him. This is from doctors that treat and research Celiac disease.

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thank you

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Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hello carisima

 

The information I found on The Canadian Celiac Association web site 

is that they recommend eating 4 slices of wheat bread for 3 months prior to a test.

 

You can find that information on this web page: Open Original Shared Link

 

 

I was gluten free for 2 years and my blood test came back negative so I'm still doing the gluten challenge.

 

Pills pills pills, sigh, poor you, I hope you get some real answers soon.

I don't trust that GI doctor based on the answers he gave you. 


Good luck with the test.

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carisima Newbie
carisima
  • Author
Posted

That's what I'm afraid of, that he doesn't know what he's doing. :(

Hello carisima

 

The information I found on The Canadian Celiac Association web site 

is that they recommend eating 4 slices of wheat bread for 3 months prior to a test.

 

You can find that information on this web page: Open Original Shared Link

 

 

I was gluten free for 2 years and my blood test came back negative so I'm still doing the gluten challenge.

 

Pills pills pills, sigh, poor you, I hope you get some real answers soon.

I don't trust that GI doctor based on the answers he gave you. 


Good luck with the test.

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kareng Grand Master
kareng
Posted

That's what I'm afraid of, that he doesn't know what he's doing. :(

Here is another. They don't agree on the exact timing and amount but they all say more than a week.

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Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Kareng there's no DGP tests listed -  :rolleyes:  sigh...  why can't they accept the DGP?   (did I miss it in the list?)

 

 

carisima, I saw a gastro enterologist about 2 weeks ago after waiting months to see him

and he told me: you don't fit the Celiac profile, you just have IBS, If I scope I won't find anything etc.

And this was a young doctor!

 

OK... back to another waiting list. :wacko:

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carisima Newbie
carisima
  • Author
Posted

Kareng there's no DGP tests listed -  :rolleyes:  sigh...  why can't they accept the DGP?   (did I miss it in the list?)

 

 

carisima, I saw a gastro enterologist about 2 weeks ago after waiting months to see him

and he told me: you don't fit the Celiac profile, you just have IBS, If I scope I won't find anything etc.

And this was a young doctor!

 

OK... back to another waiting list. :wacko:

 

Hey Marcus, I definitely don't fit the profile of a celiac, and have been told that I had IBS for years, and I was just crazy LOL.

 

The doctor I went to yesterday seemed like a long line of professionals who just don't really care about their patients. I really get tired of going to see these "medical professionals", and I used that term loosely, only to be treated like I'm an insurance cash cow for their practice, instead of a patient in need of a real diagnosis and a treatment. It's their job help find out what's wrong, not asking me to "prove" that I'm sick and not to believe everything on the internet. They are not Gods; they don't know it all.

 

Anyway, yesterday, I decided to start my official gluten challenge and ate breaded sandwich. I was waiting for the "bomb" to drop. It didnt, so I thought, maybe old doc was right. I fell asleep for the entire afternoon, (I had part of the day off). I didn't have any noticeable tummy symptoms, but then I woke up this morning and the rash on my back returned. I don't know if it's true dermatitis herpetiformis, because its flesh colored, small with only a few "acne-like" bumps, rather than than true blisters and not "itchy" except on one side of my back. It's only on one half of my back, and not the full back rash -- yet, as in the past.

It's only day one LOL. I'm pretty sure the anxiety and panic attacks will return in force, along with the diarrhea and bloating, I just haven't eaten enough bread to do the trick. Im not sure if I'm going to last through this entire challenge LOL.

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NotMollyRingwald Apprentice
NotMollyRingwald
Posted

Anyway, yesterday, I decided to start my official gluten challenge and ate breaded sandwich. I was waiting for the "bomb" to drop. It didnt, so I thought, maybe old doc was right. I fell asleep for the entire afternoon, (I had part of the day off). I didn't have any noticeable tummy symptoms, but then I woke up this morning and the rash on my back returned. I don't know if it's true dermatitis herpetiformis, because its flesh colored, small with only a few "acne-like" bumps, rather than than true blisters and not "itchy" except on one side of my back. It's only on one half of my back, and not the full back rash -- yet, as in the past.

.

I have a very similar sounding rash, except mine is between my shoulders/nape of neck/behind and in my ears. Not sure what it is either though...

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