Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Really Weird Symptoms Plus No Dx Yet, Where Do I Go From Here?
0

3 posts in this topic

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

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,344
    • Total Posts
      920,486
  • Topics

  • Posts

    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats in the past few months (thanks kids) which I took a lot longer than normal to recover from then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,414
    • Most Online
      1,763

    Newest Member
    Vic40
    Joined