Newbie Here...

[Celie]

Hi Marliss,
You have come to the right place. Like you, I am newly diagnosed and new to GF, DF lifestyle. I have been on the diet only a couple of weeks. My doc wanted me to wait until she could do a biopsy to check for Celiac before I started. I am finding my way with all to great information and helpful folks on the board. Also like you, I struggle with other AI problems. I am very hopeful that the GF/DF diet can help with everything.

Welcome!

Celie

[Stanz]

Briefly, I had been dealing with chronic diarrhea for some months, but had been so busy that I had not done anything but speculate that maybe I was allergic to wheat. My GP and my gynecologist had both suggested I have a colonoscopy because I am past 50, but no one in my family has ever had colon cancer so I said no. Until a friend of mine died of colon cancer less than six weeks after she was diagnosed.

In my pre-colonoscopy appointment, the nurse asked if I was having any unusual symptoms, so I mentioned I was having trouble with chronic diarrhea, which apparently led the MD to take biopsies. It turns out that I had an adenoma, and collagenous colitis all through my colon. When I called the nurse to find out my biopsy results, this was so far off my radar screen that I had to ask how to spell it.

I have barely started (one month) trying to figure out this gluten-free/lactose-free thing. The MD gave me some mesalamine which did nothing except make me mean, even though the steroid is supposed to stay in the gut. I am angry because I feel like my body has let me down. Again. This is my third autoimmune disease. And I am angry because it is so stupid to be angry when so many others have so much worse health challenges to deal with than I do. And I am angry because I feel overwhelmed and it's hard to work up the enthusiasm to figure out what to do so I feel better and can get on with life.

I am so glad that I found this board where this stuff is not only a daily reality that people are living well with, but that shows that humor can be found even in the most embarrassing of issues.

I am another for whom this is at least the 3rd autoimmune disorder, so completely understand the anger, you have every right to be angry, just know that you can and will get better.

As others have said, autoimmune disorders are often merely a symptom of another disease. I spent years with skin disorders and "arthritis". I saw the head rheumy doc and the head dermatologist at OHSU. All I can say is that I'm glad I didn't go the methotrexate route for my "arthritis". I was tested for everything, all tests were negative and still the rheumy doc noted on my medical records that "patient flat out refuses to try methotrexate, will likely be disabled w/in 5 years". Don't remember the exact wording but I was incensed when I saw that it was part of my records. I've sent them and my PCP and GI doc my results from Enterolab, along with a letter of how I am doing and asked that it be made a part of my medical record. I doubt they learned anything, or even paid attention, pretty sad.

Since being GF for 15 months now, I have no symptoms of those "autoimmune disorders". I predict yours will also disappear as your body heals from going GF. My family, back to my paternal GF is a story I really ought to write a book about. NONE of my siblings have been tested, although it should be pretty obvious. My MD nephew, who has already had a bowel resection, has 2 daughters with Crohns. One of them has now been GF for 4 months and her symptoms are clearing up. Maybe this will help others in my family who are undx as being GS, including a niece who is schizophrenic. Her sister is now seeing my ND and has also gone GF. Last we spoke, she'd lost 75 lbs and feels so much better. It takes time, but I believe this is a completely curable disease. The joint damage is the only thing I still have to deal with. Hang in there.

[MBombardier]

Amazing story, Connie. You should write a book! I would looooove not to be dealing with any autoimmune disease symptoms, and you have very much encouraged me. I have the skin thing going, too. My dermatologist says, "It's an autoimmune inflammatory reaction in your skin. We don't know what causes it. It will probably go away in the next couple of years, and then come back later." Lovely.

I am feeling a little less overwhelmed because a friend helped me understand that learning how to control symptoms and feel better has to be a priority over all the other issues I am dealing with right now. Also, a friend who has been GF/LF for a couple of years sent me several no-fail GF/LF recipes. So on the whole, I am feeling better about things. I know there will probably be setbacks, but one day at a time...

Thanks for your encouragement!

[Stanz]

Amazing story, Connie. You should write a book! I would looooove not to be dealing with any autoimmune disease symptoms, and you have very much encouraged me. I have the skin thing going, too. My dermatologist says, "It's an autoimmune inflammatory reaction in your skin. We don't know what causes it. It will probably go away in the next couple of years, and then come back later." Lovely.

I am feeling a little less overwhelmed because a friend helped me understand that learning how to control symptoms and feel better has to be a priority over all the other issues I am dealing with right now. Also, a friend who has been GF/LF for a couple of years sent me several no-fail GF/LF recipes. So on the whole, I am feeling better about things. I know there will probably be setbacks, but one day at a time...

Thanks for your encouragement!

NEVER underestimate the power of stress to bring on the symptoms of MC, sounds like your friend has given you great advice, you need to focus on YOU now. There are lots of recipes in Dee's Kitchen here, some of which I've posted. Being GF isn't actually that hard to do, at least it wasn't for me. It is truly one day at a time in figuring out what your body's triggers are, and obviously I don't know what other issues you have going on in your life. At this point I can say that, IMO, fibromyalgia is pretty much the rule out dx for too much stress. Learning to control my PTSD was crucial.

Many people with MC can trace it to a single event that sets this in motion. For me it was the suicides of a brother and sister w/in 5 years of each other. I had skin peeling off in sheets on both my hands and feet. I was dx with psoriatic arthritis, fibromyalgia, DHerpetiformous (maybe) and being seen for RA. It was stress that brought on the D in a body that had already been fighting it for years. Also had a history of endometriosis and bowel obstructions prior to this and it's pretty well been established here and elsewhere that gluten sensitivity causes bowel obstructions in both males and females. So, add in stress and you pretty well have a toxic mix that doctors never take into consideration - and should.

Just lovely to hear: "It's an autoimmune inflammatory reaction in your skin. We don't know what causes it." from somebody who should know more than they do, isn't it? I just feel like a veil of depression has lifted in the last 15 months.