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Suggestions for speaking with doctor?

mollepearl

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mollepearl Newbie
mollepearl
Posted

Am I crazy, or is my doctor not putting the pieces together?

1. About 8-9 months ago I saw a rheumatologist because I was tired and dizzy all the time and experiencing muscle fatigue. She tested me for all sorts of things, but I came back with regular IgA levels. The only issue was slightly elevated AST/ALT liver enzymes. She told me nothing was wrong and suggested it might be psychological.

2. Meanwhile, I had acid reflux ALL day EVERY day. I went to see a GI doctor, had an endoscopy and was diagnosed with GERD and gastritis. I had told my GI doctor that I was negative for celiac so I'm not sure if he went into my small intestine and checked for any damage. I didn't think my GI issues were related to my tired/dizzy/feeling "out of it" issues.

3. I cycled through a few too many specialists with no answers. Meanwhile, without the constant acid reflux I realized I was having regular bloating, gas, nausea, off and on diarrhea, etc. GI doctor put me on more stomach meds. I filled him in about my fatigue/dizziness and he didn't think it was related to my stomach issues.

4. I asked my allergist to test me for food allergies. I reacted to wheat and oats on a skin test but didn't come back positive in the blood test....so, inconclusive?

5. The last two months I've started having very elevated liver enzymes (in the 100s). My GI doctor tested for everything he could, hepatitis and all that. Nothing positive. He thinks I have fatty liver. I do not eat fried foods (it is instant gas, bloating, pain) and I only eat meat a few times a week. I exercise fairly regularly. He suggested I lose 15-20 pounds and come back for more liver tests. I was like...excuse me?! I weigh 125 pounds and I'm not overweight. I'm not quite 30! If I have fatty liver I cannot imagine it's caused by my diet.

6. Other random symptoms include acne/eczema type rash on my face that I can't clear up. Frequent muscle cramps, especially in hands. Feeling unreasonably tired after eating, especially in the afternoons. Also, my brother is having similar problems and hasn't found any answers either.

WHAT in the heck should I tell this doctor?? How should I talk to him, and what tests should I be asking for, especially considering my IgA was normal when it was tested about 8 months ago? Is there anyone else out there who had fatty liver/elevated enzymes due to celiac? Does this sound like celiac, or am I crazy?

All suggestions and advice appreciated. Thank you!

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cyclinglady Grand Master
cyclinglady
Posted

Fatty liver is very common for celiacs!  I am sorry that you have been getting the run-around from what sounds like incompetent doctors.  

Open Original Shared Link

Exactly what tests were given to test for celiac disease?  Here are the tests:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
(-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests)
 
I personally push for the complete panel since I only tested positive on the DGP IGA test and not the TTG tests which are often used for screening.
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

celiac disease is an autoimmune disorder and not an allergy.  Though you can have a wheat allergy as well as celiac disease. 

 

Welcome to the forum and let us know how it goes! 

 
Darren Apprentice
Darren
Posted

Agree with the above. TELL your doctor the blood panel you want done since you are the one paying for it. If it comes back positive then get a biopsy to see if it actually celiac or intolerance.  If your doctor doesn't want to do it then tell him you're getting another doctor and go see one. 

mollepearl Newbie
mollepearl
Posted
  • Author

Thanks @cyclinglady and @Darren this is useful information. :) Makes me feel less crazy too.

As an aside, I also show up with high eosinophils on my blood tests pretty regularly. Is that linked to celiac/gluten intolerance as far as you know?

cyclinglady Grand Master
cyclinglady
Posted

Could be Eosinophlic Esophagitis alone or in combination with Celiac Disease.  Google EOE.  For some reason I can not paste a link this morning from my iPad.  EOE occurs most often in kids, but it can affect adults.   We have members with this condition.  

The bottom line is to find the root causes of your symptoms -- not just meds to fix them!  

 

 

 

JKS1221 Newbie
JKS1221
Posted

I went through the same thing, just about. I didn't involve doctors trying to diagnose, but my liver enzymes were elevated, I was losing weight, weak, tired and not gaining weight no matter what I ate or how much. I also would go into food comas quite often, but weighed that to my diabetes even though my glucose readings weren't THAT bad. Anyway, I finally was hospitalized for a fast heart rate and that's when they determined it was anemia. They then scoped me to look for ulcers and found my small intestine didn't look right.  They then took a biopsy and ran tests and sure enough I had Celiac. I would definitely have your doctor test specifically for Celiac.  Blood, biopsy, and scope.  I'm finally feeling almost normal now, and if it gets too advanced, it gets bad.

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