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Spondyloarthropathy And Celiac Disease
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:o 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. :o

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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.

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:angry: 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

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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?

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Hi Grizelda,

I see why you might babble on a bit. Multiple, Chronic diseases can do that to people. :unsure: 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

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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

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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!

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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