New Here, Overwhelmed, Hoping To Find Answers....

[nasalady]

I'm here because I'm just starting to realize the magnitude of the autoimmune problems that I (and many of my family members) are facing, and I don't really know where to turn for answers. The various diseases in our family range from Hashimoto's and Graves disease to lupus and rheumatoid arthritis. I've had Hashimoto's thyroiditis for years (thyroid is dead now), and other fairly benign issues like psoriasis and asthma. But last month I was diagnosed with autoimmune hepatitis (Stage 2 liver damage) and *yesterday* I was diagnosed with fibromyalgia....BTW, is fibro an autoimmune disease??

Two of my father's sisters died of complications from lupus. Two of my adult daughters were recently diagnosed with lupus and Hashimoto's thyroiditis.

But only one person in our family has been diagnosed with celiac disease to date (via biopsy): my four-year-old granddaughter.

I've been trying the gluten free diet since Saturday (although I may have been "glutened" accidentally yesterday) and I think I notice a slight improvement in my usual gastric symptoms (diarrhea, gas, cramping), plus a tiny bit more energy. But I had always assumed I had IBS....and since I'm overweight, I would not have thought of celiac disease until I saw the articles about overweight celiacs on this site.

I've seen a rheumatologist, who told me that he can only answer questions about rheumatoid arthritis, fibromyalgia and possibly lupus; he stated that he knows NOTHING about celiac disease. Then he spent 10 minutes questioning WHY I had children, and discussing whether or not I should counsel my own children not to have children because of our bad genes!!

My liver doctor is only focused on my liver, he doesn't seem interested in any of my problems with severe joint and muscle pain, muscle weakness, and increasing clumsiness. My internist says that she can't tell me anything about side effects of the immuno-suppressant drugs prescribed by other doctors, and she doesn't know much about autoimmune hepatitis.

So I have made upcoming appointments with a NEW rheumatologist plus a gastroenterologist. Is there anyone else should I see?

Is there a medical specialist who can address ALL of these issues, and tie it all together and give me the big picture? Or is this too much to ask? I'm feeling frustrated, I've spent days on the Internet downloading papers from medical journals and emailing authors for electronic reprints of their articles, but I'm still not sure what's going on with me.

From some of the posts I've seen and articles I've read on this site, it would appear that many of the autoimmune illnesses are linked and that celiac disease can even act as a trigger to precipitate another autoimmune disease. Is there anyone out there who has had the experience of seeing organ-specific antibodies go away after starting the gluten free diet?

Sorry about the stream-of-consciousness rambling, but I've got so many questions that I can't really pin any one of them down long enough to ask it coherently. Plus I've got a bad case of "brain fog". Which is a serious problem for me because I work as a scientist for a NASA mission.

If you read this far....thanks! :-)

[Gerri]

I wrote a long answer to your quoting your information, then my computer decided that it needed a pit stop and lost everything. Can you seen this same information to Tashabear@hotmail.com Gerri

I am going out shortly, I very much like to talk with your problems, you sould so much like me. Take care

Hugs

Gerri - In subject line put that your from Celieac Disease Gluten-Free

*******

I'm here because I'm just starting to realize the magnitude of the autoimmune problems that I (and many of my family members) are facing, and I don't really know where to turn for answers. The various diseases in our family range from Hashimoto's and Graves disease to lupus and rheumatoid arthritis. I've had Hashimoto's thyroiditis for years (thyroid is dead now), and other fairly benign issues like psoriasis and asthma. But last month I was diagnosed with autoimmune hepatitis (Stage 2 liver damage) and *yesterday* I was diagnosed with fibromyalgia....BTW, is fibro an autoimmune disease??

Two of my father's sisters died of complications from lupus. Two of my adult daughters were recently diagnosed with lupus and Hashimoto's thyroiditis.

But only one person in our family has been diagnosed with celiac disease to date (via biopsy): my four-year-old granddaughter.

I've been trying the gluten free diet since Saturday (although I may have been "glutened" accidentally yesterday) and I think I notice a slight improvement in my usual gastric symptoms (diarrhea, gas, cramping), plus a tiny bit more energy. But I had always assumed I had IBS....and since I'm overweight, I would not have thought of celiac disease until I saw the articles about overweight celiacs on this site.

I've seen a rheumatologist, who told me that he can only answer questions about rheumatoid arthritis, fibromyalgia and possibly lupus; he stated that he knows NOTHING about celiac disease. Then he spent 10 minutes questioning WHY I had children, and discussing whether or not I should counsel my own children not to have children because of our bad genes!!

My liver doctor is only focused on my liver, he doesn't seem interested in any of my problems with severe joint and muscle pain, muscle weakness, and increasing clumsiness. My internist says that she can't tell me anything about side effects of the immuno-suppressant drugs prescribed by other doctors, and she doesn't know much about autoimmune hepatitis.

So I have made upcoming appointments with a NEW rheumatologist plus a gastroenterologist. Is there anyone else should I see?

Is there a medical specialist who can address ALL of these issues, and tie it all together and give me the big picture? Or is this too much to ask? I'm feeling frustrated, I've spent days on the Internet downloading papers from medical journals and emailing authors for electronic reprints of their articles, but I'm still not sure what's going on with me.

From some of the posts I've seen and articles I've read on this site, it would appear that many of the autoimmune illnesses are linked and that celiac disease can even act as a trigger to precipitate another autoimmune disease. Is there anyone out there who has had the experience of seeing organ-specific antibodies go away after starting the gluten free diet?

Sorry about the stream-of-consciousness rambling, but I've got so many questions that I can't really pin any one of them down long enough to ask it coherently. Plus I've got a bad case of "brain fog". Which is a serious problem for me because I work as a scientist for a NASA mission.

If you read this far....thanks! :-)

[Live2BWell]

Hello, you sound similar to me and several others who have found our way to this board

I too have autoimmune issues: diagnosed with Hashimotos and possible Fibromyalgia (and still undergoing treatment/diagnoses)

I have gone through the ringer with doctors for a couple of years now (and doctors not knowing about this disorder or that disease...)

I so empathize with what you are going through, it certainly doesn't help when doctors bounce you around, yet you're the one who has to "live" [or try to] a normal functioning life (( Hugs ))

Hang in there, so far this board has indeed been a lifesaver

[nasalady]

Thanks, Gerri and Jessica, for your encouraging messages!

It really helps to know that I'm not alone AND that even if the doctors are frequently clueless, there is a highly informed community of people with similar health issues who are doing their best to put helpful information out there through this forum.

The brain fog thing is really scary though....and since the rheumatologist started me on Flexoril for the fibromyalgia I'm sleepy most of the day too! I'm afraid I won't be able to work soon, and I'm the only "breadwinner" in the family right now.

My day job is demanding enough and then my second job is teaching part-time (math) at a local community college. It's been SO embarrassing to make a stupid mistake in front of my students because of my foggy state!

Oh well....I'm hoping that the gluten free diet will help. How long does that typically take to really kick in? Also, I'm worried that there may be gluten in some of my medications....is there an easy way to find out?

[elye]

Welcome to the board! You've come to the right place.

Recovery time and cessation of symptoms can vary greatly from person to person (yet another frustratingly grey area in this disease!). Some people feel much better after only a couple of days gluten-free, others can take a year before they notice a real difference. it is important that you are COMPLETELY gluten-free, as even trace amounts and cross-contamination can impede recovery and keep symptoms around.

I normally ask my pharmacist about any new prescriptions I need to take. If they don't know, they can find out very quickly for you by calling the right individual or looking up the right information.

Good luck! Keep us posted on how you're doing!

[missy'smom]

I feel for you teaching. I worked or a school and the director, who was very accepting, called me a slow processor.

In my experience the brain fog can clear up pretty quickly in the absence of gluten but problems with memory and concentration can take longer if related to vitamin/mineral deficiencies. They can get better with supplementation or healing of the intestinal tract and villi as absorbtion increases. I was undiagnosed 8 years and felt immediate relief but healed, regained energy etc. in stages. At 2 years gluten-free I feel pretty close to 100%, of course I'm 10 years older now too

For meds., some pharmacists are clueless. The info. is not in the package inserts and the manufacturer must be contacted. I have do do this myself as my pharmacy can't handle it. Grrr. I have learned to ask the Dr. to write down both the brand name and the generic name in case I am unable to contact one or the other. Some companies are easier to contact than others. I have had to e-mail some and got a response a few days later, couldn't get phone numbers for others and was unable to get through to a person when I called others. Some have been so accessable and quick to provide good info. I use this site as a reference. Open Original Shared Link If I remember right, Pfizer says they use no gluten in any of their meds. so I'll sometimes ask if the pharmacy has one made by Pfizer. My pharmacy is starting to get used to me and the last time I went in they let me call from their phone, which helped a little. I've always been able to get gluten-free meds, but have had to wait a day or two at times(for a response), paid a little more for the brand name, or had to pick it up at another location because they didn't stock the one that I found was gluten-free at that location.