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How my visit with the GI doctor went


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#1 Chopper

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Posted 26 April 2011 - 09:12 PM

My GI doctor came in smiling and asked me what was new. I told him I have Hashimotos and just got on meds yesterday, and I tested positive for limited scleroderma. He seemed quite shocked and asked what other symptoms I had that led me to a rheumatologist. I told him mild Raynaud's, red face, dry eyes and mouth, dry skin & cuticles, GI trouble (celiac, burping, gastritis, gastroparesis), tiredness, and a positive ANA of 1:320. His response to me was that the GI trouble I'm having is usually seen in diffuse, not limited, and is usually seen when the diffuse scleroderma is bad, which would include severe skin involvement and other symptoms. He has no answer for why I have excessive burping since antibiotics didn't help the suspected SIBO (small intestinal bacterial overgrowth). I left feeling like he doesn't believe I have limited scleroderma. He said he is very interested to see what additional testing the rheumatologists do and which systemic sclerosis I have so that he knows better how to treat me. I don't know what to think. I thought I've read here that there are others similar to me? Does anyone here think that what I'm experiencing is not typical of limited? Or is there another category I fit into?

Thanks,
Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Jeannie McClelland

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Posted 27 April 2011 - 08:24 AM

Hi Chopper,

For goodness sakes, of course what you are experiencing is seen in limited scleroderma, as well as in diffuse. The 'limited' only describes skin involvement. I have the 'sine' form (no skin involvement) and have all the GI issues you do (and SIBO). I know a lot of other people here on the Forum in the same boat. Have you thought of asking your rheumatologist to recommend a GI who has more experience with patients with autoimmune disease? That's how I found the truly wonderful guy I see.

Here's a quote from the University of Michigan's Dept. of Internal Medicine web page on GI issues in scleroderma:

"After Raynaud phenomenon and skin thickening, involvement of the gastrointestinal system is the most common feature of scleroderma. Gastrointestinal involvement occurs only in systemic sclerosis but is a prominent feature of both diffuse scleroderma and limited scleroderma."

That's pretty clear, eh?

A lot of people, doctors included, who know a little bit, but not a lot, get hung up on 'typing' scleroderma patients. Since the presentation varies so much from patient to patient and where we might be in our journey with the disease, this strikes me a fairly fruitless and sometimes counter-productive exercise~
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network

#3 marsha

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Posted 27 April 2011 - 08:49 AM

Chopper,
I hope you can find someone who can give you some definitive answers. I think from what I have learned over the past week or so is that everything seems to be very interwoven!! There is no one way to present, Have you sought out a second opinion? Do you live in an area where you have choices? I have seen 2 internists and 2 Rheumotologists and I seem to be getting conflicting opinions also, Chopper, you mentioned that you have been diagnosed with Hashimoto's, My mom was diagnosed with Graves disease is that similar? Keep us posted on your progress I know that there is nothing more frustrating then not being able to get a def decision. :emoticons-group-hug: Big Hugs
Marsha

#4 Jeannie McClelland

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Posted 27 April 2011 - 09:13 AM

Hi Ladies,

Here's a link to autoimmune thyroid diseases that you both might find interesting. There are separate entries for Graves and Hashimoto's. The primary difference between the two is that Graves is an over-active thyroid (hyperthyroid) and Hashimoto's is under-active thyroid (hypoactive).
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
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(Retired) ISN Artist
International Scleroderma Network

#5 Chopper

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Posted 27 April 2011 - 10:01 AM

Jeannie:

Thank you for your reply! That's very interesting. That makes me wonder if I'll eventually be diagnosed with sine scleroderma. For the time being I'll just be patient and wait since the doctor at the lupus center wanted me to come back to her in 3 months. I'll do that and at that point I believe I'll bring up 'sine' and ask about referrals to a sclero specialist and a GI doctor with experience with sclero. I don't like leaving an office with the feeling I had yesterday.

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#6 marsha

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Posted 27 April 2011 - 10:03 AM

jeannie thank you!

#7 Chopper

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Posted 27 April 2011 - 10:08 AM

Thanks, Marsha! I don't believe I have another choice nearby for GI doctor, especially for one familiar with AI diseases like sclero. We live in small town PA and have to travel 2-3 hours to see specialists. So it'll be interesting to see how this all plays out after my next rheumatologist visit. That info is interesting in the link that Jeannie provided on the thyroid. Amazing how sensititve that little organ is!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.