Do I or do I not have Celiac, that is the question.

[Pamjo8089]

8 months ago, my immunologist went to great lengths to perform many Lab tests which revealed several things, one being celiac. Compounded with my severe symptoms, constant illness, she recommended I see a GI to have a biopsy, but did not weigh my diagnosis heavily on those results. I saw a another specialist, who was going to perform the biopsy, and she confused the matter by saying Celiac is not an autoimmune disease for one, and judging by a 7 year old endoscopy / colonoscopy, stated that I probably don't have celiac? She downsized it by saying that I probably just have gluten intolerance. My regular GP doctor has minimized it even more by saying she won't be convinced of Celiac until I have the biopsy, and is depending on that alone. I'm supposed to see a GI in April to discuss having the biopsy done, but I pretty much have lost interest.  I'm starting to wonder if I have Celiac problems at all or if this is all in my head? At first I was relieved thinking that I'd found the root cause of many other problems and now, it's just become one big hassle. ☹️

Edited February 29, 2020 by Pamjo8089
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[GFinDC]

The usual diagnostic process is the blood antibodies testing followed by an endoscopy.  If the antibodies are positive they schedule the endoscopy to confirm gut damage.  Celiac disease can cause malabsorption so getting your vitamins/mineral levels tested is helpful.

It sounds like some of your doctors don't understand celiac disease.

[RMJ]

A lot of doctors, including some of yours, don’t understand celiac disease.  It IS an autoimmune disease. Doctor’s lack of knowledge can make the diagnosis process very long and frustrating.

I mentioned to one doctor that I had celiac disease (I was asking how a drug he proposed would affect me since it accumulated in the intestines).  His response was “you probably don’t have that.”  I am skinny so I even look like someone who might have it!  I replied “The biopsy was positive last week.” He didn’t say anything more about it.

What lab tests were done to look for celiac disease?

[Pamjo8089]

Hi. Just the normal blood work to check the antibodies for Celiac.

[Pamjo8089]

On 2/29/2020 at 10:40 AM, GFinDC said:

The usual diagnostic process is the blood antibodies testing followed by an endoscopy.  If the antibodies are positive they schedule the endoscopy to confirm gut damage.  Celiac disease can cause malabsorption so getting your vitamins/mineral levels tested is helpful.

It sounds like some of your doctors don't understand celiac disease.

I am scheduled to see a GI about the endoscopy but hope he doesn't really only on that or I'll be reluctant to see him further. Yes, you're right. I am deficient in vitamin D3 and Dr put me on a RX supplement. Regular GP doctor's done nothing. Says everything's ok. Everything's not okay.

[RMJ]

4 minutes ago, Pamjo8089 said:

Hi. Just the normal blood work to check the antibodies for Celiac.

There are four main blood tests for Celiac antibodies, TTG IgA, TTG IgG, DGP IgA and DGP IgG. Did you have all of them?  Were they all positive?  

[Pamjo8089]

On 2/29/2020 at 7:50 PM, RMJ said:

A lot of doctors, including some of yours, don’t understand celiac disease.  It IS an autoimmune disease. Doctor’s lack of knowledge can make the diagnosis process very long and frustrating.

I mentioned to one doctor that I had celiac disease (I was asking how a drug he proposed would affect me since it accumulated in the intestines).  His response was “you probably don’t have that.”  I am skinny so I even look like someone who might have it!  I replied “The biopsy was positive last week.” He didn’t say anything more about it.

What lab tests were done to look for celiac disease?

Thanks for the info too. Knowing it is an auto immune disease helps. I would suggest you see a GI from now on or an immunologist. That's who found mine. (Did the blood work).

Just now, RMJ said:

There are four main blood tests for Celiac antibodies, TTG IgA, TTG IgG, DGP IgA and DGP IgG. Did you have all of them?  Were they all positive?  

Yes. My allergist/immunologist checked all of them. She checked everything. Liver function, thyroid, ... She's very good. My GP is stupid, apparently.

[Pamjo8089]

I haven't had a lot of support either. My psychiatrist said my problems are "psychosymatic". I'm tired of dealing with this whole thing. 

[RMJ]

I didn’t get the official celiac diagnosis until I had the biopsy.  Before that my medical record just said that I had a positive antibody panel for celiac.

[Pamjo8089]

Thanks. That's where I'm at now. Next step biopsy. I definitely have a gluten problem but not sure to what degree.