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umsami

Is It Worth Testing?

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I'm in my 40s now.  When I was in my 20s, I saw a few different gastreoenterolgists trying to figure out what was wrong with me.  My issue? Basically, diarrhea with urgency.  Like no warning.  I'd have accidents even because it came on so suddenly.  Completely embarrassing.  I went through three colonoscopies, and nothing was found.  So, they put me on what was then Rx Immodium... and sent me on my way with a diagnosis of IBS.  Nothing changed.  I just learned to eventually buy Immodium at Costco and keep it in my purse, car, everywhere.

 

A few years ago, I realized that I often got the diarrhea about 20-30 minutes after eating fast food when traveling.  I suspected it was the hamburger bun, but didn't really want to delve into it too much.  I had been told by my GI that it couldn't be celiac disease because I was obese.... and they just scoped me to rule out Crohn's.  

 

I also have had hypothyroidism for the past 15 or so years, and was told a year and a half ago that it was Hashimotos.

 

I remember when the "gluten-free Diet" book came out thinking... oh dear, thank God I don't have to give up gluten.  I love flour-containing things so much.

 

About a month ago, I got back my 23andme genetics test, and included in the results was the fact that I had one of the genes that made it possible for me to develop celiac disease.

 

In the past week or so, I've actually been tracking my symptoms (yes, I've been living with the diarrhea thing for 20+ years), and now I'm pretty sure it's related to gluten.  I'm at the point where I'm wondering if I should even bother going to yet another GI (I really don't want another colonoscopy) to request blood work, etc.  I don't want to be brushed off. Should I just eat gluten free?

 

Thing is, my seven year old has been complaining a lot about stomach pains.  Like every day.  This is a kid who does not complain.  A few years ago, he told me once his ear hurt.  Never said another thing about it.  Three weeks later, the nurse at school called me to tell me that he had a very bad ear infection.  He'd suffered three weeks and said nothing.

 

My daughter is also extremely thin, and always has been.  (5th percentile for weight).  She doesn't complain about food or her stomach hurting, though.  She doesn't like bread, though.

 

So, I'm thinking about getting tested only to see if it might be worthwhile for them getting tested.  (Does that make sense?)  What do I say to the GI? Will it be hard for me to convince them? I feel like I went through so much in my 20s, that I'm kind of wary of getting brushed off again.

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there are some with celiac that are emaciated with diarrhea, and others that are overweight and constipated, and normal weight with diarrhea and keep the combinations coming  :)

 

request a complete celiac panel, which consists of the blood tests:

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

good luck!

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I started looking into celiac disease because my son was complaining of stomach aches and headaches and I didn't want him to have issues his whole life like I did. A good friend pointed out that I should get tested too. One year later we are all gluten-free and feeling quite a bit better BUT we did not all have positive tests so I think it's a good idea to test everyone - what if you have a false negative and don't test your kids so they go untreated for years?  I think it is a good idea for you all to get tested at the same time.

 

I listed the celiac panel on another post so I'll copy it below:

  • tTG IgA and tTG IgG (positive tests indicate intestinal villi damage)
  • EMA IgA (this picks up more advanced damage to the villi and is similar to the tTG tests)
  • DGP IgA and DGP IgG (a newer and really good test)
  • total serum IgA (a control test to make sure you don't get false negative in the other tests)
  • AGA IgA and AGA IgG (older less reliable tests that show gluten sensitivity rather than intestinal damage)

You'll need to be eating gluten in the weeks prior to testing or you risk false negatives.

 

Celiac disease causes small intestine villi damage so they do endoscopic biopsies (go in through the mouth) to get a look at the damage rather than a colonoscopy.

 

Bring the doctor a list of your symptoms. There are 300 or so symptoms related to celiac (someone around here has a link with the list) so include everything from joint pain to mouth sores to hair loss to cognitive disfunction to bloating to "D" to ridged fingernails. Timelines as to when everything began can help too.

 

Good luck with the doctor. I hope he listens.

 

Editted to add P of P posted just before me - ditto everything she said.  :D

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