TheFuzz
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Scott Adams reacted to a post in a topic:
Chest pain from celiac
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I had similar pains after going gluten-free. Turns out it was more related to undiagnosed rheumatoid arthritis and fibromyalgia. Because celiac is an immune dysfunction disease, it's possible you have another underlying one. I wish mine had been identified much sooner, so you may want to look at symptoms of diseases like RA and lupus to see if you have...
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Scott Adams reacted to a post in a topic:
Bodywide muscle weakness/fatigue
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Bodywide muscle weakness/fatigue
TheFuzz replied to BNGed8's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Sounds like you are going through a lot of what I went through. I was ultimalty diagnosed with rheumatoid arthritis and fibromyalgia. I had most of what you described going on. One thing that helped was I did a lactose tolerance test(it's one of the few foods you can do a diagnostic test for) and turned out I had a low enzyme activity, lactose intolerant... -
Scott Adams reacted to a post in a topic:
Embarrassing Coeliac Disease Symptoms
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Embarrassing Coeliac Disease Symptoms
TheFuzz replied to Wendy wilby's topic in Coping with Celiac Disease
I just went through something similar. Turns out I am also lactose intolerant, and that was the source of all the bathroom trips. I did a lactose tolerance test that flagged it. It took a couple weeks of no dairy before I got back regular. I now have lactose free dairy and it has been fine for me. The lactose enzymes don't work reliably for me though... -
Scott Adams reacted to a post in a topic:
Still frequent pooping (frequent Diarrhea) 8 years into diagnosis
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I've lived with the same problem for years. Recently I took a lactose tolerance test, and found I can't digest lactose. I've been eating lactose free cheeses and milk, and went from needing the toilet up to 15 times a day down to 2. Apparently lactose intolerance is pretty common with celiac. Might be worth looking into it.
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Sorry for the long delay...I did try thiamine but didn't notice any changes. I was up to almost 2000mg a day, which was a lot of pills to swallow. I tried for about 1.5 months. Anyway, I've just been diagnosed with fibromyalgia, so that explains a lot of the brain stuff. I'll just add it to the long list of incurable chronic diseases I seem to be...
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I've been taking a B-complex for a few years, it helped with my nerve pain and stomach issues. It's 100mg B1. When you tried a high dose, how many did you take in a day? Curious if my mental issues could be related to it.
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T burd reacted to a post in a topic:
Constant pain left upper abdomen - coeliac and lupus
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If they suspect Lupus, the first referral should have been to a rhumatologist. It doesn't matter what caused it(in your case, possible Lyme). It may not be Lupus, it may be RA(my diagnosis had a lot of Lupus indications, but it's all a bit of a gray area, and ultimately, I was diagnosed with RA.
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T burd reacted to a post in a topic:
Constant pain left upper abdomen - coeliac and lupus
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A Rhumatologist should be able to find you the right medication, I don't think biologics have nearly as many side effects. You really don't want to leave joints inflamed for too long or they will be permanently damaged. Even if the immune issues were triggered by lyme disease, there is no guarantee treating lyme will resolve them. You need to get the joint...
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T burd reacted to a post in a topic:
Constant pain left upper abdomen - coeliac and lupus
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Ya, I'm your age too. I could hardly walk or hold a cup of coffee. I'm on HCQ and currently leflunomide(not working great). I was on methotrexate, but it got toxic for me. I'm surprised your doctor is being so laid back with treating the lupus if you have symptoms like that. Mine got me on prednisone right away along with the other stuff to get the...
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T burd reacted to a post in a topic:
Constant pain left upper abdomen - coeliac and lupus
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I had years and years of unexplained abdominal pain even after going full gluten free for celiac. I was recently diagnosed with Rheumatoid Arthritis. It took awhile for that medication to work, but most of my pains have gone away. You may just need whatever they gave you for Lupus to start working.
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If I'm really exercising hard it definitely takes longer for the pain to settle down, usually not more than a day or so. Celiacis fine, I can't remember the last time I got gluttened. I had my numbers checked, and they were good, thoguh I don't remember what they are. I don't think gluten is an issue.
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The pain isn't horrible, it's just there when I breath deeply. It mostly feels like a bruised rib would. Last month I layed about 400 sq ft of brick, so ya, I'm used to doing heavy awkward lifting! I mostly work through any pain I have, then enjoy a hot bath.
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Really sorry I haven't checked in here in a long time! Turns out I have rheumatoid arthritis. I've been treated for it, which has helped immensely. But I still have unresolved chest pain. The good news is there is no obvious cause. The bad news is it still hurts.
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I had neurological issues for a long time, adding B vitamins helped a lot(as well as a daily multivitamin). But 1.5 years ago my swollen feet and ankles suddenly got worse. I could barely walk. I couldn't even hold a coffee cup. I'm a physically active guy so it was pretty debilitating. Anyway, it turns out I have rheumatoid arthritis, which is an immune...
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Part of my pain was caused by Pleurisy(diagnosed from CT), which is similar to what you are describing. It's gotten a lot better, but I still have a few sore points.