Please Help. I'm So Sick And At A Loss Here.

[bgburke]

Hello to all and thanks in advance for taking the time to read this (because not only am I chatty, I also have a lot of history).

 

I am a 35 yo female with hashimotos thyroid (and very very high TPo antibodies: 1287).

 

In November while casually sitting at my desk I started having upper left abdominal pain just under my ribs. I don't recall now if I had just eaten anything.

 

At this point, I've had the following tests:

 

Endoscopy NEGATIVE celiac

Blood work NEGATIVE celiac

Endoscopy showed mild gastritis, doc said very mild

 

CT scan in November - negative

CT scan in March - negative

 

Ultrasound - negative (gallbladder sludge, mild)

HIDA Scan 83% EF (overactive, but doc makes no comment)

 

My symptoms:
Upper left abdominal pain (a lot)

Gas and rumbling like crazy

Steattorhea (fat malabsorption any time I eat anything with fat I have actual visable fat floating in the stool)

leg and body pain, fatigue

 

 

I thought for sure my biopsy and blood work would show up negative. When it didn't, I thought pancreas cancer, but two CTs show nothing, so then I thought gallbladder but it's overactive which is something there is no information on -

 

My question - is there any way this can still be celiac?

Is there anyone on here who has obvious fat malabsorption but negative biopsy and blood?

Is there anyone on here who has upper left abdominal pain?

Does Celiac's disease just pop up out of nowhere like that?

 

I eat a LOT of gluten. I can't imagine not eating gluten even though I work for a celebrity health and fitness professional who has umpteen years of research against eating it.

 

I'm not sure where to turn at this point. But I'd appreciate any insight you could possibly give me, any hope?

[bgburke]

I forgot to add my celiac panel (taken 12/4/15)

Name   Value   Reference Range IGA   209   71-263 MG/DL TISSUE TRANSG IGA (TTGIGA) RML   5   0-19 UNITS GLIADIN AB IGG RML   3   0-19 UNITS GLIADIN AB IGA RML   7   0-19 UNITS

[nvsmom]

I had a lot of left side abdominal pain before I was diagnosed.  I also have Hashi's, and in combination with celiac disease, I was chronically constipated.  The descending colon (the one going to the "exit"   ) goes down the left side, and it used to give me a fair bit of discomfort and gas rumblings, especially when things wanted to get moving but wouldn't.

 

You asked:

 

My question - is there any way this can still be celiac?

Yes. Not all celiacs are positive in the two tests you had done.  If you still suspect celiac disease you should get the full celiac panel done:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG (deaminated glidin peptides) - a newer test often good at detecting early celiac disease
• EMA IgA (endomysial antibodies) - very similar to the tTG IgA
• AGA IgA and AGA IgG (antigliadin antibodies) - older and less reliable tests which are often replaced by the DGP test

 

Is there anyone on here who has obvious fat malabsorption but negative biopsy and blood?

I think gallbladder issues can cause that too.  I'm not knowledgeable in this.

 

Is there anyone on here who has upper left abdominal pain?

Me.    There are others - search the forum for it.

 

Does Celiac's disease just pop up out of nowhere like that?

Celiac can pop up at any time in life, often after an illness or trauma (like pregnancy) but it can also start for no apparent reason at all.

 

This report has good info on celiac disease: Open Original Shared Link

 

If everything comes up negative but you still suspect celiac disease or non-celiac gluten sensitivity (NCGS), you have two options: try the gluten-free diet for  a good 6 months and then reassess your health, or continue eating gluten and consider testing again in a few years.  You're in a tough spot.  

 

Best wishes in whatever you decide to do.