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Think I Have Celiac - How Do I Get My Doctor To Test?

allysmom

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allysmom Newbie
allysmom
Posted

Having browsed this forum and other celiac sites in the past couple of months, I think I may very well have celiac disease. I am 39 and started having abdominal pain last August and have since been through every routine test for GI problems, from ultrasound for gallbladder (though mainly pain is on my left side), EGD for ulcers (which I had a history of), CT scan and colonoscopy. (A large polyp was found that my doctor said would likely have been cancerous well before I hit the 50 age requirement for a first colonoscopy, so I guess that was a good thing, anyway.) Also have been put on Zelnorm, and an anti-depressant that would supposedly help "calm those nerve endings that may be overly sensitive". Neither worked. Throughout all these tests, my dr. remained convinced that I have IBS. My symptoms are left upper abdominal pain, bloating, flatulence (lots of it), and tiredness. I have done the atypical in that I have gained 10 lbs in the past year as opposed to losing weight, but it seems that is possible according to some of what I've read. I also have days where my abdomen is tender in a particular spot (like it's bruised) and that doesn't jive with IBS to me. My latest trip to the dr, I mentioned a possible wheat or gluten connection and his response was to send me for allergy testing. (I'm not allergic to any foods as it turns out.) The allergist was quick to point out that there is a difference between allergy to wheat and a wheat or gluten intolerance, but "the only real way to diagnose that is through elimination of foods from the diet". Why do he and my internist both seem to ignore the first step of blood tests to further investigate the gluten connection. I definitely see a connection to certain foods with wheat or gluten - I was eating shredded wheat cereal every day in an attempt to help my "IBS" and when I quite eating that in favor of a corn cereal, that seemed to help my symptoms a little. Also I notice when I occasionally drink a beer I pay the next day with pain. How do I convince my dr. to do further gluten testing, or should I just find a new doctor? I hate to start over.

Sorry for my wordiness! I appreciate any advice! :)

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deesmith Apprentice
deesmith
Posted

Throughout all these tests, my dr. remained convinced that I have IBS.

This is typical. Many of us have been diagnosed with this or misdiagnosed with this, including me.

My symptoms are left upper abdominal pain, bloating, flatulence (lots of it), and tiredness.

Although these may be from other conditions, these are typical symptoms of celiac disease.

I have done the atypical in that I have gained 10 lbs in the past year as opposed to losing weight, but it seems that is possible according to some of what I've read.

This is also typical. Some of us have weight gain.

How do I convince my dr. to do further gluten testing, or should I just find a new doctor? I hate to start over.

All I can tell you is good luck with this. Have you asked him? Just come out and tell him you would like to at least start with the blood tests (others here can tell you specifically what to ask for). If he says no, you may have to switch. Many of us have gone through doctor after doctor until we just put our health in our own hands and took control. I got so fed up with the doctors, I made a special trip to NYC to see a specialist in the field of celiac disease. I'm still fighting my insurance over it because he was "out of network". But we do what we need to do in order to get better!

Just in case you're pushing for the testing (please do) then you need to continue to eat gluten until the blood work is done and/or the biopsy.

Good luck.

Dee

tarnalberry Community Regular
tarnalberry
Posted

ask for it specifically - not in a round-about fashion. say - "what we're trying now isn't working, and I'd like to rule out the options. can you do a complete celiac blood panel: total IgA, anti-gliadin IgA, IgG, EMA and tTg please so that we can rule out celiac disease, which we haven't done yet?" (knowing, of course, that a negative blood test isn't absolutely ruling it out and trying the dietary test after the blood tests if they're negative and you want to still test it.)

allysmom Newbie
allysmom
Posted
  • Author

Thanks for the responses. Knowing some specifics to ask for when inquiring about testing will be a big help. Also, just hearing my suspicions validated by people that have suffered through it makes me feel better. I don't know that my doctor really thinks this, but after you go back repeatedly for a problem and each test proves nothing, you start to feel like they must think you're a hypochondriac. Had a dr. tell me once (not my current doctor) that he wished the internet was never invented because people look up all these dire diseases and convince themselves that they have them. The truth is they probably wish it hadn't been invented because it allows people to question them!

allysmom Newbie
allysmom
Posted
  • Author
ask for it specifically - not in a round-about fashion. say - "what we're trying now isn't working, and I'd like to rule out the options. can you do a complete celiac blood panel: total IgA, anti-gliadin IgA, IgG, EMA and tTg please so that we can rule out celiac disease, which we haven't done yet?" (knowing, of course, that a negative blood test isn't absolutely ruling it out and trying the dietary test after the blood tests if they're negative and you want to still test it.)

Just curious, I know G.F. must mean gluten free. What does C.F. stand for? (I'm new to this.)

tarnalberry Community Regular
tarnalberry
Posted
Just curious, I know G.F. must mean gluten free. What does C.F. stand for? (I'm new to this.)

You'll see lots of something-F's around here. The common ones:

G F - gluten free

C F - casein free (casein is the protein in milk, and is different than lactose, the sugar in milk)

E F - egg free

S F - soy free

and while I haven't seen abbreviations being very common for them, there's also nut free, legume free, rice free, and a whole host of other intolerances.

deesmith Apprentice
deesmith
Posted
Just curious, I know G.F. must mean gluten free. What does C.F. stand for? (I'm new to this.)

Right-- as tarnalberry posted to you.

Also, you'll see "cc" everywhere. just in case you didn't know, it's cross-contamination. It's a really big deal for us. For instance, at first I forgot to buy a new toaster and wondered why my gluten-free waffles made me so sick! I learned the hard way how cross-contamination (the leftover bread crumbs in my old toaster) can make you sick! That's what makes it so hard to eat out sometimes.

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