Re: Celiac & other autoimmune diseases

[Guest guest]

Stacey, many people with one AD also have others. Most are manageable. Do you have some reason to be especially concerned that you might develop lupus?

I'm glad to hear that you're doing so well with the GF diet.

I have CD (well controlled) and autoimmune hepatitis (AIH), also controlled. Both were diagnosed at Kaiser, incidentally. I'm now at UCSF, due to insurance changes.

My understanding is that ADs, in general, are familial, and those of us with one have an increased likelihood of developing others.

It sounds as if you're keeping on top of your health, being aware of changes and working with them.

You might like to visit aarda.org, American Autoimmune Related Diseases Association.

The main suggestion I'd have for you is to keep a record of medical visits, questions asked at those visits, tests, diagnoses, and medications. One can do this without becoming obsessed; just keep a folder with files in your computer and/or in hard copy. I print out questions before seeing my doctor, I enter the answers, and I keep that document in my file. Remember that the results of any tests or labs you have belong to you; you have the right to a copy of them, perhaps on-line, perhaps hard copy. I find some of them complicated to obtain at UCSF, but it can be done. At Kaiser, it's much easier.

Alas, this is life. We deal with it. Best wishes.

H.

-----Original Message-----

From: staceygold36 <stacey_ackerman@...>

< >

Sent: Tue, Sep 14, 2010 11:08 am

Subject: [ ] Celiac & other autoimmune diseases

I'm feeling really frustrated and I'm hoping that some of you can help. Not sure where else to turn to.

I was diagnosed with celiac 3 years ago. Then, I was diagnosed with sjogren's syndrome 2 1/2 years ago. And with my recent test results, I now have hypothyroidism, elevated cholesterol levels and positive ANA test result (which was always negative in the past). So, I'm just wondering what's next? And, I'm worried it's lupus!

I'm feeling helpless and extremely frustrated. I have been on a strict GF diet for 3 years and I know it's been successful. My body now absorbs nutrients, I have reversed osteopenia and my tTg test is normal.

I really thought that once I got on a GF diet, my body would stop attacking itself and everything would be OK. However, this is just not happening.

Has anyone come across ways to stop the attack in addition to going on a GF diet (diet, vitamins, exercise, alternative medicine)? I read that mercury could be an issue?

Do you know of any good rheumatologists in the bay area (non-Kaiser)?

Any help would be greatly appreciated!

Sincerely,

Stacey

[Guest guest]

Hi Stacey,

I can sympathize with your situation (and I'm sorry you're having to face it, too). I was diagnosed gluten and dairy intolerant 2 years ago and have been very strict in maintaining a GFCF diet, including almost never eating out. Last year, I was diagnosed with thyroid cancer (although not hypothyroidism), and then in Jan. this year I had a positive ANA test for systemic sclerosis (a serious autoimmune disorder). It has all been a bit overwhelming.

Fortunately, my symptoms do not "clinicially confirm" the systemic sclerosis, so I am deemed not to have it for now. I did some reading on autoimmune disorders (I also have Reynaud's and possibly Sjogren's), and learned that there are some dietary restrictions that help some people. For me, I had been eating seaweed for its high iodine content (to help my thyroid), and I learned that high-iodine foods can fuel the fire if you have autoimmune issues. Also, avoiding nightshades - potatoes, tomatoes, peppers, eggplant, cherries - can help calm down autoimmune reactions. Elimating all this stuff from my diet (in addition to the gluten and dairy) seemed to help a lot in my case.

I did have one test for mercury, and it was a little high, but not really bad. Any type of toxin can stress the liver, so it's worth pursuing if you are concerned about it.

I was referred to a rheumatologist at Stanford, but the wait was about 5 months for an initial appointment, so I agreed to see a resident there. Her name was Amy Elliott. She seemed very good, although my case required no treatment or follow-up, so I have only one initial visit on which to judge. Because she was a resident (when I saw her in March), I'm not sure whether she is there anymore or not. It seems most rheumatologists have long waits to get an appointment.

Good luck! Feel free to email me back if you have questions.

From: staceygold36 <stacey_ackerman@...>Subject: [ ] Celiac & other autoimmune diseases Date: Tuesday, September 14, 2010, 6:08 PM

I'm feeling really frustrated and I'm hoping that some of you can help. Not sure where else to turn to.I was diagnosed with celiac 3 years ago. Then, I was diagnosed with sjogren's syndrome 2 1/2 years ago. And with my recent test results, I now have hypothyroidism, elevated cholesterol levels and positive ANA test result (which was always negative in the past). So, I'm just wondering what's next? And, I'm worried it's lupus!I'm feeling helpless and extremely frustrated. I have been on a strict GF diet for 3 years and I know it's been successful. My body now absorbs nutrients, I have reversed osteopenia and my tTg test is normal.I really thought that once I got on a GF diet, my body would stop attacking itself and everything would be OK. However, this is just not happening.Has anyone come across ways to stop the attack in addition to going on a GF diet (diet,

vitamins, exercise, alternative medicine)? I read that mercury could be an issue?Do you know of any good rheumatologists in the bay area (non-Kaiser)?Any help would be greatly appreciated!Sincerely,Stacey------------------------------------

[Guest guest]

Just FYI, to make sure it's understood that having a positive ANA test does NOT mean you have a connective tissue disease (systemic sclerosis, lupus, etc.): the ANA (antinuclear antibodies) test is used if symptoms point to the possibility of a connective tissue disease -- but "a positive result does not mean you have the disease. Many people with no disease have positive ANA tests." (http://www.mayoclinic.com/health/ana-test/MY00787/DSECTION=results)

Sent from my tin can and string. Please excuse mumbling and static.

-----Original Message-----

From: <julie_seekinginfo@...>

Sent: Tue, Sep 14, 2010 11:56 am

Subject: Re: [ ] Celiac & other autoimmune diseases

Hi Stacey,

I can sympathize with your situation (and I'm sorry you're having to face it, too). I was diagnosed gluten and dairy intolerant 2 years ago and have been very strict in maintaining a GFCF diet, including almost never eating out. Last year, I was diagnosed with thyroid cancer (although not hypothyroidism), and then in Jan. this year I had a positive ANA test for systemic sclerosis (a serious autoimmune disorder). It has all been a bit overwhelming.

Fortunately, my symptoms do not "clinicially confirm" the systemic sclerosis, so I am deemed not to have it for now. I did some reading on autoimmune disorders (I also have Reynaud's and possibly Sjogren's), and learned that there are some dietary restrictions that help some people. For me, I had been eating seaweed for its high iodine content (to help my thyroid), and I learned that high-iodine foods can fuel the fire if you have autoimmune issues. Also, avoiding nightshades - potatoes, tomatoes, peppers, eggplant, cherries - can help calm down autoimmune reactions. Elimating all this stuff from my diet (in addition to the gluten and dairy) seemed to help a lot in my case.

I did have one test for mercury, and it was a little high, but not really bad. Any type of toxin can stress the liver, so it's worth pursuing if you are concerned about it.

I was referred to a rheumatologist at Stanford, but the wait was about 5 months for an initial appointment, so I agreed to see a resident there. Her name was Amy Elliott. She seemed very good, although my case required no treatment or follow-up, so I have only one initial visit on which to judge. Because she was a resident (when I saw her in March), I'm not sure whether she is there anymore or not. It seems most rheumatologists have long waits to get an appointment.

Good luck! Feel free to email me back if you have questions.

From: staceygold36 <stacey_ackerman@...>

Subject: [ ] Celiac & other autoimmune diseases

Date: Tuesday, September 14, 2010, 6:08 PM

I'm feeling really frustrated and I'm hoping that some of you can help. Not sure where else to turn to.

I was diagnosed with celiac 3 years ago. Then, I was diagnosed with sjogren's syndrome 2 1/2 years ago. And with my recent test results, I now have hypothyroidism, elevated cholesterol levels and positive ANA test result (which was always negative in the past). So, I'm just wondering what's next? And, I'm worried it's lupus!

I'm feeling helpless and extremely frustrated. I have been on a strict GF diet for 3 years and I know it's been successful. My body now absorbs nutrients, I have reversed osteopenia and my tTg test is normal.

I really thought that once I got on a GF diet, my body would stop attacking itself and everything would be OK. However, this is just not happening.

Has anyone come across ways to stop the attack in addition to going on a GF diet (diet,

vitamins, exercise, alternative medicine)? I read that mercury could be an issue?

Do you know of any good rheumatologists in the bay area (non-Kaiser)?

Any help would be greatly appreciated!

Sincerely,

Stacey

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