Next Steps?

[TXGoddess]

I'm trying to sort out my complicated health, so I'll try to be brief.  I have an appt w/a GI doc on 1/9.  I'm a 40 yr old female with a family history of colon cancer.  Had a colonoscopy done 1/2012 and one polyp removed.  This appt will be to schedule a follow up colonoscopy and to discuss possible celiac.  I'd like to get an idea of what the doctor *should* be asking/doing.  I've never seen this one before (my old one moved out of the country) and I don't know his experience in the area.

 

Here's a synopsis:

 

2009 - Positive ANA

2010 - Positive antibodies for Limited Scleroderma

2013 - Positive Lyme test. Diagnosed chronic EBV.

July 2014 - Positive Hashimoto's. Bowel Cascade (tTG/DGP screen) - Positive

July - Dec 2014 - Gluten free w/2 small intentional cheats. No noticeable reaction (but I have so much other stuff going on that it's hard to tell)

Dec 23 2014 - Decided to get definitive diagnosis. Went back on Gluten.  Within a few days significant joint pain noted. 

 

Did 23andme testing in Dec 2013. DLQ8 - Heterozygous.  DLQ2 - normal. 

 

No gastrointestinal changes noted between with or without gluten.  Original complaints initiating this whole series of events were migraines (since age 11), fatigue, joint pain, and cold intolerance.

 

Mother is gluten-free after positive blood test.  No endoscopy ever done and I don't know what blood test she was given. Just that her doctor told her to go gluten-free.  

 

I'll be removing gluten from my diet again as soon as testing is complete. However, I know me.  In order for me to be completely strict, I'll need a definitive diagnosis.  It's a mental thing and as much as I'd like to believe otherwise, I just know how I am.  What should I be asking/requesting to insure that I get the proper diagnosis?

[nvsmom]

The tests you could have done are:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests that are better at detecting early celiac disease
• EMA IGA (endomysial antibodies) - similar to  tTG IgA but detects more advanced damage
• total serum IgA - a control test - 5% of celiacs are deficient in IgA which will cause false negative test results
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests which have been replaced by the DGP tests
• endoscopic biopsy - get at least 6 samples taken to lower your chances of false negative results from spotty damage

Pages 10- 12 of this report has info on the tests: Open Original Shared Link

The blood tests need 8-12 weeks of the equivalent of about 1-2 slices of bread per day; the biopsy only needs 2-4 weeks of gluten.

 

Steroids can affect the results (false negatives).

 

Your 2014 tests looks like you have celiac disease tests done, and that they were positive. If so, that's celiac disease and you need to be gluten-free even without a lot of gastrointestinal symptoms.  I was accidentally gluten this Xmas. I had a stomach aches for a couple of hours, and was bloated for a few days, but my joint pain has come back as well my headaches - this is 10 days later! Not all of us get GI symptoms that are severe.

 

I think with your AI disease history and symptoms, it is wise of you to go gluten-free. You have pretty common celiac disease symptoms.  Hopefully they will continue to clear up for you, just give it time.  My joint pain took well over 6 months before it improved - it actually got worse before it was better.  I am still improving (slowly) after over 2 years gluten-free. The gluten-free diet is, for many celiacs, is not a quick fix. Hang in there and good luck with the doctors.