Questions / Venting

[audreyw]

Hi, I'm new here, and undiagnosed. I think I have celiac, and I just want to get some feedback from others. Here's my deal:

I'm a type 1 diabetic, which I just found out is a major risk factor for celiac disease. No doctor has mentioned this connection to me, even when I told them my symptoms.

My primary doctor suggested that I get tested for gastropathy, which turned out negative.

Then I saw a different doctor who x-rayed my abdoman and told me I have contsipation (no kidding!). When I asked what could cause it he said I haven't trained my bowels properly! He didn't even ask about my diet. Grrr.

Then I called my gynocologist who ordered an ultrasound to make sure there's not a growth (there wasn't, thank god).

That was yesterday. So then I started Google-ing my symptoms along with 'diabetes', and lo and behold, I found out I have a 1 in 10 chance of developing celiac just by being a diabetic. WHY don't doctors tell you these things???

These are my symptoms. They started 4 months ago, right after I had the flu in December.

• Severe constipation. (I actually went 8 days in January with no bm).
  
• Bloating (sometimes I look 4 months pregnant).
  
• Weird stools (when they actually do happen). Looks like some undigested food, greasy looking, light color. Sometimes colors vary (light with streaks of dark)
  
• Dull constant pain/discomfort in right abdoman.
  
• Really really dry skin, esp. hands.
  
• Moody and irritable a lot...feels like PMS all the time
  
• Frequent headaches
  

So am I right? Does this sound like it could be Celiac?

I have an appt. in 4 days to get a blood test. Do I have to keep eating gluten between now and then? I just realized yesterday that this could be my problem, so it's only been one day since I've had any food with gluten. I don't want to eat any if it might be causing my problems, but could 5 days gluten-free be enough to screw up the test?

Thanks for any feedback!

[KaitiUSA]

You do have symptoms of celiac disease. I would get genetic testing as well as these tests for celiac:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

You do need to be on gluten for a good 3 months prior to testing to get accurate testing.

Doctors are very ignorant sometimes and don't look at a lot of connections. I had to switch doctors a few times before anyone would listen to me.

[audreyw]

Thanks for the feedback, Kaiti. I'll bring that list of tests to my doctor.

-Audrey

[Lesliean]

I want to applaud you Audrey for taking control of your health and researching this so well. You are on your way to guiding the doctors towards the right diagnosis (whether it be Celiacs or not). We are behind in diagnosing Celiac disease (estimated around 1% has it and .1% is diagnosed) but with informed patients like you, more people will benefit and be treated. Please post the blood work results and how it went.

Leslie

Good Luck!