Really Weird Symptoms Plus No Dx Yet, Where Do I Go From Here?

[cindyb1]

Hello!

 

Its taking me forever to get a real diagnosis on whether I have celiac or non celiac gluten intolerance which is frustrating. I went to a top doctor here in Southern CA but her appointments are very hard to get, no one returns my messages and on my last appointment, she walked in with her keys in her hand, ready to leave quickly. She recommended a biopsy but it could be inconclusive because I have not been consuming gluten. 

 

I did consent to the biopsy however, its been two weeks and no one is returning my call to schedule it.

 

Because Ive been off gluten since last July, except for cross contamination and accidental gluten consumption in things like sauces, gravies, going out to eat, etc the blood test was inconclusive. 

 

She ran a gene test and I do have the  H.L.A. DQ2 plus a whole host of celiac symptoms. She said this is not a clear diagnosis and Im in a "gray zone" of no official celiac diagnosis. I feel like a fraud saying I have celiac if I dont.

 

Since the "flip was switched" last March, I have a really odd symptom when I am sleeping, I suddenly feel like Ive been hit in the head and I wake up abruptly like someone has dropped a brick on my head. This feeling only began since I started being unable to tolerate gluten! Its scary. I actually passed out last year and spent a night in the ER after it happened the first time. It happens rarely but perhaps when Ive consumed trace amounts of gluten.

 

Lately I have also had bad heart palpitations. I had BBQ sauce from a restaurant last night and had bad heart burn, heart palpitations and woke up with a terrible headache along with the brick dropping on my head sensation. 

 

I also ate breakfast out and even though I told the waitress I was gluten free, I believe the eggs were powdered because they had a weird consistency!

 

Like many of you have felt, I'm very frustrated and unsure of what's wrong with me. My body does have an achy feeling to it which I attributed to exercising but now I dont know. Im frequently fatigued too.

 

I thought the doctor would've given me literature or sent to me a nutritionist to help cure my gut or recommended some supplements to help with the damage the gluten has done but NOTHING. Not even a single brochure. Since gluten hides in countless foods, I would have also thought she'd thoroughly go thru that with me but NOPE.

 

I really don't know where to go from here. Advice? thoughts? Anyone else experience that weird feeling or heart palps? (in addition to the digestive distress) Has anyone had great luck with a good doctor? 

 

XO
cindy
 

[kareng]

If you have been gluten-free for a year..... And are still getting symptoms - perhaps it's not gluten? You really can't get an accurate blood test or endoscopy after a year gluten-free. Might be a good idea to expand your thinking and see if it is another problem.

[BlessedMommy]

It sounds like you probably do have celiac, however without currently consuming gluten, you are most likely not going to get a DX unless you start eating gluten again. You have to decide how important a DX is to you, can you stay gluten free without it?

 

In my case, at a certain point I didn't really have much of a choice about pursuing further testing, as I had a failed gluten trial with extremely severe symptoms. (see sig for details) Really, the main reason for conclusively DX'ing celiac is so that people will follow a gluten free diet carefully. I figured that in my case, a $3,000.00 hospital bill was essentially my "biopsy substitute."  I committed to being gluten-free for life at that point.

 

In the end, you have to make the choice about whether to go gluten free without diagnosis or pursue a gluten trial. If you pursue a gluten trial, I highly recommend consulting a physician and doing it under their supervision and with their guidance.

 

Good luck!