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- Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Going for upper endoscopy today
At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and m... -
- marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications3Bee balm lipbalm not gluten free
To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten. -
- Mari replied to Jmartes71's topic in Coping with Celiac Disease4Related issues
jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...- 1
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- Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Patiently Waiting to See Results
It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point. -
- catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Patiently Waiting to See Results
My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...- 1
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By Midwesteaglesfan · Posted
At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork. He suspected some sort of reactive inflammatory arthritis. My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation. Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs, we found that I should have an upper endoscopy for insurance purposes in the future. I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope. They were able to schedule me in for 2 days later. I had been gluten free, or as close to it as I could be for about 5 days. I know I ate some brats with it but wanted to use them up. My symptoms had gotten slightly better in those 5 days. I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such. I’m hoping those 5 days didn’t screw this endoscopy up. I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days, my stomach hurts, joint pain is coming back up so I know the inflammation is there. Hinesight after this diagnosis, I have had chronic migraines since my late teens. Has that been a lingering symptom of celiacs all these years? I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted. And the joint pain. So getting in the car for the 2 hour drive to the hospital for this scope now. Wish me luck! -
By marlene333 · Posted
To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten. -
jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12 and D3. About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some of my problems returned and I started to loose weight. So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net
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By Scott Adams · Posted
It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point. -
My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
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