Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hey guys.
I have some AMAZING news. I was diagnosed with Celiac earlier this week. Yes, it sounds like it sucks, I'm going to have to make some huge permanent lifestyle and diet changes, but I think this is the answer that I've been searching for for well over a year now. I've had stress fractures, veerrryyy severe neuropathy that keeps me in bed for days, gastroenteritis, hair loss, ulcers, stomach masses, major anemia and a bunch of other blood deficiencies, anxiety problems, fibro, and some other things. (And diagnosed with osteoporosis at 14.) I have a large syrinx, but I've been told for months that it couldn't cause so much pain. I've been told that there was nothing wrong with me. I've been told that it's all in my head, or that I'm doing it for attention. No doctor has ever understood until now... I think this is the news I've been waiting for. I just don't understand how I could have gone to twenty different doctors and no one ever found out it was Celiac. It seems ridiculous that I've spent so much of my teenage life in misery when the answer was so simple..
But, I'm thrilled. I've just started my gluten free diet (which I'm really overwhelmed with though; if anyone has any advice I would really appreciate it! I've been doing research but I'm still kind of clueless as I haven't been to the Celiac specialist yet.) I do have a lot of neuropathy from nerve damage, but this could be causing so much of my pain. And after I change my diet I should feel like a totally new person soon!!! :D I know I'm going to have this chronic pain problem for the rest of my life but for the first time ever, I actually have hope. I can actually do something about this. I can actually be HAPPY with my life. It's going to take some time, but things are going to get better. I just can't believe it.
I'm SOOOOO ready to get this behind me. The past couple months have been the worst of my entire life; I've been staying in bed for days at a time because I've been so upset and in so much pain. But now I know that there's going to be an end to all this. It's a great feeling. :) So, anyway. The main reason I posted this is because I was hoping you guys might have sime more knowledge on gluten free foods. I could really use some help.
And for those of you that are having problems that are undisguised right now, don't ever give up. This proves that there IS HELP. There IS AN ANSWER. It might take a dozen different doctors, but it really is possible.
Hope everyone has their pain under control this week.
I have some AMAZING news. I was diagnosed with Celiac earlier this week. Yes, it sounds like it sucks, I'm going to have to make some huge permanent lifestyle and diet changes, but I think this is the answer that I've been searching for for well over a year now. I've had stress fractures, veerrryyy severe neuropathy that keeps me in bed for days, gastroenteritis, hair loss, ulcers, stomach masses, major anemia and a bunch of other blood deficiencies, anxiety problems, fibro, and some other things. (And diagnosed with osteoporosis at 14.) I have a large syrinx, but I've been told for months that it couldn't cause so much pain. I've been told that there was nothing wrong with me. I've been told that it's all in my head, or that I'm doing it for attention. No doctor has ever understood until now... I think this is the news I've been waiting for. I just don't understand how I could have gone to twenty different doctors and no one ever found out it was Celiac. It seems ridiculous that I've spent so much of my teenage life in misery when the answer was so simple..
But, I'm thrilled. I've just started my gluten free diet (which I'm really overwhelmed with though; if anyone has any advice I would really appreciate it! I've been doing research but I'm still kind of clueless as I haven't been to the Celiac specialist yet.) I do have a lot of neuropathy from nerve damage, but this could be causing so much of my pain. And after I change my diet I should feel like a totally new person soon!!! :D I know I'm going to have this chronic pain problem for the rest of my life but for the first time ever, I actually have hope. I can actually do something about this. I can actually be HAPPY with my life. It's going to take some time, but things are going to get better. I just can't believe it.
I'm SOOOOO ready to get this behind me. The past couple months have been the worst of my entire life; I've been staying in bed for days at a time because I've been so upset and in so much pain. But now I know that there's going to be an end to all this. It's a great feeling. :) So, anyway. The main reason I posted this is because I was hoping you guys might have sime more knowledge on gluten free foods. I could really use some help.
And for those of you that are having problems that are undisguised right now, don't ever give up. This proves that there IS HELP. There IS AN ANSWER. It might take a dozen different doctors, but it really is possible.
Hope everyone has their pain under control this week.
In both of the big supermarkets where I get my shopping from they have a whole section of gluten free meals, and product alternatives. It makes inviting a friend of mine for lunch very easy. I just pick something I like knowing she can eat it.
Hope you have the same, and I'm so please for you having a diagnosis. Not knowing is so hard.
In both of the big supermarkets where I get my shopping from they have a whole section of gluten free meals, and product alternatives. It makes inviting a friend of mine for lunch very easy. I just pick something I like knowing she can eat it.
Hope you have the same, and I'm so please for you having a diagnosis. Not knowing is so hard.
1)remove gluten from your living quarters in every way. everything has gluten...food, toiletries, cleaning products, etc. so your lipstick, lotion, shampoo, dog food, frozen vegetables (yeah), coffee/tea, etc. when i say it has gluten this is where sensitivity comes into play. some products have straight up gluten in them (wheat/barley/rye/etc), some have hidden gluten in them like vitamin e or tocopherol derived from wheat as opposed to corn, or have been manufactured in a facility that also manufactures gluten. you will likely get sick from last as well but definitely the 1st two.
2)your natural tendency will be to go buy 2,000 of gluten free food.DONT!!! your best bet to recover is to eat whole foods that are unprocessed. this means eating mostly meat, fruits, veggies, and rice.
3)you are likely sensitive to things other then gluten right now. meaning you might have issues w milk or cheese or etc. but after your body has healed you might be able to tolerate them again.
listen you have a long and difficult road ahead but you will get better. my wife after 1 year and 2 months is finally starting to feel better. we have had to do a ton of reading on our own of books that were written by doctors that r experts on the field, online forums, and blogs. there is so much to avoiding gluten that writing 1 blog post is not easy to summarize it but i hope this gets u going well. i would also suggest that you heed doctors advice on celiac but also know that if they are telling you something that is contrary to what you body is telling you then believe your body. what do i mean by this? my wife gets sick when we go to a grocery story or relatives house where lots of food is being cooked that has gluten. by breathing it in she gets sick. the doctors swear this is not possible. i'm weighing what phds say vs how my wife feels. guess who i believe...wife. the doctors don't know enough yet so you need to fight for yourself. don't be afraid.
also people that don't know celiac disease and how difficult it is will trivialize your disease and the pain/struggle/etc it causes. ignore them. you need to truly forget about them and their ignorance. you keep your own counsel.
we wish you a speedy recovery and good health!
Yaaaay on getting some answers, but sorry for the diagnosis....
Ummmm dont really know much about Celiac, except gluten is everywhere,... inc medications..... it will be awesome to see you sparkly again, and hopefully you will feeling better than new in no time.....
I wish we new where Sunnybun was, she has alot of wisdom when it comes to Celiac, the do's and the dont's...
Huge Hugs n Sparkles and wishes for a fast return to a healthier you...
Was it the GI doc that gave you the diagnosis?
Take care.
Jeri