Spondyloarthropathy And Celiac Disease

[grizelda]

I'M SHOCKED! hi everyone...i am just getting around to registering here, although i have been a lurker for awhile. i was diagnosed with celiac disease three years ago. for the first year and a half i was religious about remaining gluten free....100%.....then i would slip every now and then, without much obvious consequence...just some constipation and a bit of stomach distress. i never had any of the classic symptoms of celiac...none at all. matter of fact, i only had the small intestine biopsy because the doc wanted to see if i had the bacteria that can cause the ulcers i had. i went to see this doc because of trouble swallowing and pain.....he was shocked too when the results came back positive for celiac.....he didn't believe it at all. thought it was a mistake. then we did the blood work and sure enough, it was a match to the diagnosis.

i've had alot of surgeries, the necessity for which was suddenly explained when i ended up in a rheumatologists office three years ago at the suggestion of a podiatrist when my foot just wouldn't heal after foot surgery. months were ticking by and the inflammation was still severe...i required another procedure just to drain the fluid. the rheum doc diagnosed spondyloarthropathy, an inflammatory soft tissue disease.....the diagnosis explained my entire lifetime of pain. i was diagnosed with fibromyalgia many years ago, and myofascial pain syndrome. she put me on sulfasalazine and i now also use bextra.....and it is only now, after shoulder surgery two months ago and inflammation that will not resolve, mostlikely meaning that i will need an arthroscopic procedure to "clean things up", but we won't know for sure til i finish the prednisone pack (5 days)(i'm really babbling here aren't i?)that the rheum doc has started to connect celiac with spondyloarthropathy, saying that they are definitely linked....and that if i eat even one gram of gluten i am causing inflammation throughout my entire system, not just my small intestine.

needless to say, i'm a bit taken aback by this news.....not that i am stupid and don't realize that everything is connected, so to speak.....but she seems to be indicating that the celiac caused the spondyloarthropathy situation. anyone out there have any ideas on this issue? thanks in advance.

[Guest jhmom]

and that if i eat even one gram of gluten i am causing inflammation throughout my entire system, not just my small intestine.

Very interesting, I never thought of it that way and it does make a lot of sense.

My late mother-in-law had rheum arthiritis and after reading about celiac disease I suspect she probably had it too and didn't know it. I was very sick for over a year, she was very worried about me and was there for every test I went through. I didn't know enough about celiac disease before to educate her on it and she passed away before I got my diagnosis.

[dhickey]

Hi, I am so frustrated!! To say the least... I was diagnosed with Celiac Sprue a week ago via blood test. For 15 years I have been running around with this thinking I had IBS (irritable bowel Syn) nobody took the time to have me tested. I also have been tested positive for RA and I have panic attacks. As well as alot of other symtoms of CS. I am going to meet with a Dietician but that is not until Jan 22. So you can see I am scared I do know that this Disease can be life threatening can someone help me with what I can eat and what I can't eat..

Thanks

[wolos]

Hello, dhickey- I know you feel frightened and confused right now. It's very normal considering most of the easily available foods are laced with gluten. Remember that you can eat rice, corn, potato and tapioca, and a whole host of other foods. If you begin by eating as though you live in the 1800's- cook everything yourself; avoid pre-packaged foods, stay away from restaurants for the short-term. Read package ingredients diligently!! Learn the hidden glutens. Contact companies when you have any questions about their ingredient list. There are some very good cookbooks out there and some decent gluten free packaged foods at the health food store.

My 4 year old daughter was diagnosed with celiac disease 8 mos ago. She has insulin dependent diabetes (type 1, diagnosed at 10 mos. old) and her doctors test her for related diseases/disorders annually. She was seemingly symptom free and they said she had celiac disease. I didn't believe this- eventually we followed up with a biopsy and she really does have celiac disease. Since being Gluten Free, her diabetes is more easily managed--- so her crazy rollercoaster blood sugars were her celiac disease symptom, which makes sense now, considering it is a disease of malabsorption.

Anyway, our favorite breads are Rice Almond or Rice Pecan made by "Food For Life", found in the freezer section of your health food store. My Shoprite supermarket is now carrying this and other gluten-free items! We think the best rice pasta is make by Tinkyada. Follow package directions closely. Eating rice pasta takes a little getting used to- but we really like it. Lifestream makes Buckwheat wildberry toaster waffles that are really delicious. Van's makes several gluten-free waffles too. Kashi makes a gluten-free cereal called Cranberry Promise that's yummy. Envirokids makes several cereals: Gorilla munch and Panda Puffs are good. My daughter lives on corn tortillas with black beans and cheese, chick peas, brown rice, peanuts, cashews, fruit, popcorn. She doesn't eat meat. If you do, there are more choices out there.

Good luck. Remember that this learning curve time is difficult, but will only last a little while. And remember that it will pay off and you will be feeling so much better soon.

Is there anyone out there who has diabetes and celiac?

[tammy]

Hi Grizelda,

I see why you might babble on a bit. Multiple, Chronic diseases can do that to people. Yet, I hope that you find the support you want here. I strongly suggest that you visit two websites. Sorry, I don't have the exact address but just do a search for Symbiotics. Also try another search for Moducare and Polysaccharides and autoimmune diseases. These are excellent immune supports for people with multiple disease symptoms.

If you choose not to do the search, I trust that you will be good to yourself and here's a hug from me to you.

Take Care of yourself.

Tammy

[tweener]

grizelda,

I'm not sure if I have the same problem or not. I have been having problems for years with scar tissue causing problems. I had 3 surgeries in the last 2 years on my right ankle and leg and 2 have been because scar tissue has come back worse each time causing a great deal of problems. I had a torn peroneal tendon in my ankle and which my doctor went in an repaired. Six months later I had to have surgery to partially remove the sural nerve in the left ankle and foot because I had so much pain from scar tissue. My doctor said the scar tissue had everything a mess. Within 6 months after the second surgery, I had a terrible time with the scar tissue again causing me to tear the same tendon but in a different location. The MRI show that both tendons were fully torn, but actually when my doctor went it to operate she found 1 fully torn and the other tendon was stretched out so bad and intertwined in scar tissue it made it hard to determine what was the tendon and what was scar tissue. She currently feels that the scar tissue is back once again even though I was exercising the ankle within 1 1/2 weeks after surgery trying to prevent scar tissue from coming back.

I have also had terrible problems with adhessions and abdominal surgeries that has caused a lot of problems. None of my doctors can tell me what has caused any of these problems and they all say there is no cure in the near future for scar tissue.

I also have ankylosing spondalytis along with other health problems. I don't know what Spondyloarthropathy, so I'm not sure it there is any relationship your problem and mine.

Good Luck with everything,

Tweener

[plantime]

Hey, Tweener, My mom had the same problem with scar tissue growing haywire. My son was a toddler when he had to have an itty bitty cut on his face lasered because the scar tissue grew everywhere but across. The dermatologist that did my son said it is a genetic condition, and we would have to keep an eye on all of our children and me, since it came from my mom. Make sure you see your doctor for regular checkups on it, and ask if there is any technique, like the lasering done on my son, that can stop the excess growth. The dermatologist told me that if the doctor knows about the problem, there are treatments and methods that make it not a problem. Maybe your doctor needs to study up on it more!