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Visit To My Rheumatologist Today

mushroom

By mushroom
in Doctors

Recommended Posts

mushroom Proficient
mushroom
Posted

This was my second visit to this doc and I do like him; I last saw him about a year ago. So we caught up with my treatment in NZ the last year, current problems, labs, meds, etc. I then couldn't resist bringing up the subject of other autoimmune diseases and my celiac disease and how I thought my psoriatic arthritis was as a direct result of the celiac.

His response was that as far as he was concerned there was no proven link between celiac and other autoimmune diseases, and he said he had very few patients who had been diagnosed with celiac. Ah-ha, I said, diagnosed is the operative word. Most people with celiac disease remain undiagnosed; I have not been officially diagnosed myself--I had to diagnose myself after being told for years I had IBS and fibromyalgia, rather than celiac and arthritis. He blinked a few times :lol:

I think I left him with something to think about :blink:

S

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flourgirl Apprentice
flourgirl
Posted

Hi Shroom! I don't know how he can state that immune disorders stand alone and have no link with one another (did I read that right?). From what I read they seem to travel in packs, so to speak. Personal experience says yes. My mom has several issues. Since going gluten-free, and having many issues clear up.....but many go worse, and doing the "rat on a spinning wheel" race to figure it all out, I also have discovered Sjogrens, Fibro, Raynauds......such a fun group! My Rhuemy doc.....who I really liked, pretty much threw up her hands and said....I can't do anything for you! I still like her....at least she is honest about her ignorance. Anyway......hope you are doing all right with your issues....glad you spoke up and left the doc speechless! :P

Takala Enthusiast
Takala
Posted

Sometimes other doctors or laypeople ask why I don't have a rheumatologist.

That's why.

Nancym Enthusiast
Nancym
Posted

My former rhuematologist (I don't need him any longer) gave a lecture to the gluten group in town here. I think he's completely aware of the gluten/arthritis link. He diagnosed me with Anklyosing Spondylitis but it pretty much went away when I went gluten-free.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
Since going gluten-free, and having many issues clear up.....but many go worse, and doing the "rat on a spinning wheel" race to figure it all out, I also have discovered Sjogrens, Fibro, Raynauds......

That's been my experience too!!! :lol:

Right now I'm trying to figure out exactly what's going on with my kidneys... it appears to be connected to my itchy rash (chronic urticarial vasculitis?) and episodes of anaphylaxis, which started after a few months on the gluten-free diet. I saw a rheumatologist in March and she was CLUELESS. She took a look at my ANA and a few other tests and said I did not have Sjogren's, lupus, psoriasis, or any other connective tissue disorder. Hmm... does it count when your own immune system is attacking your mast cells and basophils? One place that mast cells love to gather is in the connective tissues <_<

GottaSki Mentor
GottaSki
Posted
Right now I'm trying to figure out exactly what's going on with my kidneys... it appears to be connected to my itchy rash (chronic urticarial vasculitis?) and episodes of anaphylaxis, which started after a few months on the gluten-free diet.

Just wondering if your urticaria / anaphylaxis seem to correspond to heat and humidity??? I've had extreme heat intolerance for the past couple summers...but it has gotten worse since going gluten-free.

Thanks!

PS...my path to celiac diagnosis ran thru a "top" rheumatologist whom told me he doubted I had an autoimmune disease....why oh why is celiac only treated by gastroenterology???

Mother of Jibril Enthusiast
Mother of Jibril
Posted
Just wondering if your urticaria / anaphylaxis seem to correspond to heat and humidity??? I've had extreme heat intolerance for the past couple summers...but it has gotten worse since going gluten-free.

The urticaria does get worse if I take a hot shower <_< Heat can also be a trigger for anaphylaxis, but it doesn't seem to be for me... thank goodness! Just in case, I'm not pressing my luck with the sauna (even though I used to LOVE it).

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GottaSki Mentor
GottaSki
Posted
The urticaria does get worse if I take a hot shower <_< Heat can also be a trigger for anaphylaxis, but it doesn't seem to be for me... thank goodness! Just in case, I'm not pressing my luck with the sauna (even though I used to LOVE it).

Thanks! Still hoping my severe intolerance of heat and joint issues will resolve with recovery from 43 years of gluten :).

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