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    Do you have questions about celiac disease or the gluten-free diet?

blaze615

Help! I Dont't Know If I'm A Celiac/gluten Sensative

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So my problem is that I have lived with rheumatoid arthritis symptoms for almost 10 years. Since i was a teenager. The several doctors I've been to have told me that my tests results are not postive for Lupus or Rheumatoid Arthritis but since I have the symptoms of it (my body attacking itself thus causing inflamation of my joints) I am treated with RA medications. For 10 years nothing has worked except a steroid to ease my pain. My current doctor has told me I'm running out of options as far as medicine goes.But all my doctors agree I cannot remain on this steroid as it will eventually wear away my bones. But if I go more than one day without it I am completely incapacitated. Can't walk, can barely hold a pencil, etc. Recently a bone density scan on my body has revealed some bone loss already but not major...yet. My younger sister developed the same condition as me about 2 or 3 years ago, right around the same age I was when I started getting joint pain. This year she tested positive for gluten sensativity and was advised by her nutritionist to go on a gluten-free diet. She's been on it for 4 or 5 months and she tells me she is barely on any medication now. SO I got tested also, twice! Once through a site called Enterolab (stool sample and swabs of the inside of my mouth) and once through blood test with my nutritionist. Both tests came back negative for gluten sensativity but indicated I had the gene for it. I was told to try out the diet anyways as sometimes sensativity goes undetected in tests and she didn't want to put me through a colonoscopy. So for the first month I tried it i actually felt good. I reduced my medication by a lot, my hives disappeared (i use to get them every day) and it seemed like I was doing well. I only started this diet in early April, so it hasn't been even 2 months yet but about 2 weeks ago I started getting joint pains again. and till now the pain is increasing and i've had to go back on the full dose of steroid I've been taking for years. I THINK I've been following the diet well enough, I'm not sure. I have eaten at restaurants and have had cooperation from the waitresses to ensure my food is not cooked anywhere near wheat. I also eat alot of Dipsy Doodle corn chips, which on the Wise site says it is free of wheat gluten. My bf likes to cook on the BBQ grill and tells me he cleans it and nothing could survive the heat of the grill anyways so the grill is disinfected. I don't know though.

Contamination is possible I guess but when my sister gets contaminated she feels achy for a few days, no more than a week ,and then feels good again. I'm beginning my third week of achy joints and feel very discouraged. How long should I stay on this diet before giving up and going back to my doctor to seek possible other treatments? Then I think maybe theres something else I'm allergic to other than gluten. Seeing how well my sister is doing gives me hope but then I think back to my negative results and think perhaps I'm just desperate to find some kind of cure rather than go back to being a guinea pig for doctors trying out new medicine after medicine. Does anyone have any advise? Like I said, I havent been on it for even 2 months yet I'm just discouraged cuz I was doing well for 4 weeks and now its back to how it used to be. Maybe I was just having a good month? Please help! Any advise/opinions is much appreciated! Sorry for the long post!! Thanks again!

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If your sister got better and you have the gene and you actually got better for a while, I think there's certainly a chance you have celiac. And you have nothing to lose and everything to gain.

You haven't been gluten-free long enough to fully heal yet so what you really need to try VERY hard to do for a good while is eat simply and avoid all potential CC. The Wise snack is gluten-free but odds are it's made a line that also produces something with gluten. Even the most careful restaurants can have contamination problems, especially if it's busy, so you really should avoid eating out as much as possible for a while. Don't do fast food at all. Avoid processed foods as much as possible for several months. Eat meat, vegetables, fruit, dairy -- things very unlikely to be contaminated. I wouldn't be so worried about the grill once stuff has been burned off, but see if your bf will agree not to cook anything with gluten on it for a while.

Good luck

richard

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I also eat alot of Dipsy Doodle corn chips, which on the Wise site says it is free of wheat gluten.

but are they free from rye and barley "gluten" and oats?

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Before my diagnosis of celiac I had arthritis and fibro along with neuropathies. I was on Canadian canes and we expected me to be in a wheelchair soon. It took almost 6 months but I grew more pain free as time went on. I cryed the day I found myself running up the stairs. I have no need for meds anymore but have to be very diligent in my avoidance of gluten and CC. One other thing that helped was limiting potatoes, tomatos and peppers for a while also. Make sure all your toiletries are gluten free, and check all your meds and vitamins. One thing that got me more than once was my can opener. Get one just for gluten-free foods along with the toaster. I am hopeful for you but we often have a lot of ups and downs at first. But boy when things get better it is like beginning life all over.

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Sometimes when people go gluten-free they have a problem with dairy. You might try to elimminate the dairy for 6 months and see if that will help speed the recovery. That means read labels for both. I think it is because the small intestine reacts to the dairy like gluten, until it is fully healed. Hope this helps.

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I used to have horrible arthritis also. When I discovered it might be diet related I avoided wheat, soy, corn, eggs, ALL dairy, tomatoes, potatoes, peppers, red meat and sugar. Probably a few other things too. Really, all I ate for a year was fish, rice, most fruits, most veggies, sunflower seeds and almonds. It was very restricted, but I got my life back and now (10 years later) I am joint pain free. I still avoid some foods (see my signature), but don't feel too deprived, considering that I'm now healthy.

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