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The Run Around...

JesikaBeth

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JesikaBeth Contributor
JesikaBeth
Posted

Hello everyone. I thought I'd come here for support, as I'm very frustrated.

 

I'm a 33 y/o female with Diabetes type 2, Hashimotos Thyroiditis, and Fibromyalgia. I am also a recovered Bulimic. I struggled with Bulimia for 12 years, and have been recovered for almost 8 years now.

 

5 ish years ago I was having horrible GI problems and my fibromyalgia symptoms were a mess.

 

I went to the doctor who diagnosed me with severe GERD. I was put on 30mg of Prevacid a day.  I was also having horrible stomach burning, intermittant diarrhea and constipation, etc.  I wound up having a colonoscopy, which turned out negative.  At my begging, I asked for a Celiac pannel (to which he poo poo'd and said he didn't believe I had celiac, but to appease me he'd do the pannel.)  The pannel came back abnormal, but he said again he didn't believe it was celiac but perhaps just some gluten sensitivity and I did not have to go gluten free.

 

Fast forward 5 years later, I have since been diagnosed with Diabetes type II and Hashimotos Thyroiditis (I had the fibromyalgia diagnosis back then.)

 

I am still having all the GI symptoms I had back then, but much worse. I saw a new GP, who is sending me to a new GI for an endoscopy consult.

 

Needless to say, I'm nervous and frustrated.  A] I've never had an endoscopy or biopsy. B] I'm going to be livid and let down if I infact do have Celiac Disease, and went through all of this for a doctor who wouldn't listen to me (... and why do a colonoscopy??? I have since learned that's not how you diagnose anything regarding to Celiac disease)

 

Plus, having Diabetes I'm now a bit unsure how to handle all of this.  I am so so versed in gluten free eating (with the exception of spices and such that have gluten in them)

 

I dunno what I'm asking for here, just maybe some support - personal stories - experiences, etc.

 

Thanks, everyone.

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

here's my first suggestion...call that old GI doctor and get a copy of all test results!!

 

i'm curious, did you develop diabetes before or after your first GI visit?  AI diseases like to have a buddy  :(

 

I'm glad you saw a new GP.  When is your new GI consult?

 

here's an interesting abstract from pubmed  Open Original Shared Link

 

sorry this is so choppy, I'm on a bit of a time crunch.

 

Keep eating gluten until all testing is complete, and here some information on the blood testing for celiac with newer tests that were probably not available your first testing 

 

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:

Open Original Shared Link

 

Hope you feel better soon!

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

I developed pre-diabetes & fibromyalgia before hand, and Hashimotos after. Thanks for the information. My consult is on October 30th.

Kassia Newbie
Kassia
Posted

My route to a gluten-free world started at severe acid reflux. While my doctor says it's celiac based on the blood test, my endoscopy was negative. Still, can't argue with results...including the blissful lack of acid reflux attacks. Your life sounds a bit like mine, except my doctor finally had a lightbulb moment when it came to testing for celiac. I personally call what I have non-celiac gluten intolerance, but it just doesn't matter. I know how to keep myself healthy.

 

Here's hoping your new doctor is more focused -- and please remember that awareness of celiac and other gluten-related syndromes is much higher than it was five years ago. This is a very good thing for people like us.

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

Thanks, Kassia. My new GP wanted me to see this new GI doc, although my new GP mentioned an endoscopy he didn't mention anything of celiac. When I see the new GI doctor on the 30th, I'm going to be thorough with my history in regards to Celiac testing, the colonoscopy, and my past and current symptoms. I'm glad to hear there is more awareness now, as compared to 5 years ago. Even if I do test negative for Celiac through the endoscopy, I obviously have some type of non celiac gluten intolerance (I would assume) due to my abnormal celiac pannel (???)

 

I'm just ready for some answers, and ready to feel better... Ya know?

 

Thanks again :)

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      ttg iga high (646 mg/dl) other results are normal

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