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Flare up after 2 years, any advice
1 Replies
dkarssen79 - August 18

Hi! I haven't been on here in quite some time. I seem to be having a flare up or it's just starting and I'm wondering if anyone has any suggestions. I had made some major changes in my life and was symptoms free for about 2 years.

I just want to share the changes I made in hopes they can help someone else. I went off of birth control. I noticed my flare ups would start shortly after starting birth control and would last until I stopped taking it. I have tried many different kinds and with any of them it was clear from shortly after I started them to after I stopped was pretty much nonstop severe fms symptoms. I also learned I have a gluten sensitivity. I stopped eating gluten for the most part but not completely. I drastically cut the amount of sugar and caffeine that I allow myself to have. It seemed the combination of the three is what started my 2 years of being almost completely fms symptom free. Oh and I also stopped ALL medications I had been put on. It seemed not only did they make me feel worse but some of the meds I was on just the help with the side effects of others. So I weened myself off of them. I did this on my own after researching the meds and how to stop taking them. I would NOT recommend doing this without talking to your doctor or making sure that you know how to ween yourself off because most meds can be very harmful if you just stop taking them cold turkey.

I recently started clean eating, after about a month I slipped a little and have been eating some processed foods. I'm wondering if maybe that's what is causing this in addition to not getting as much sleep as I should be. Has anyone noticed a clean diet really improving symptoms?

I know this is a long post and I appreciate you all reading! Hopefully maybe something I've put in here can help someone. And if you have any suggestions on what might help start this flare up I would really really appreciate it!! When I get flare ups it tends to be nonstop severe symptoms for months on end. Prior to the two years flare up free I was on disability from work for 2 1/2 months, I ended up with shingles, insomnia and could barely care for my children or even function. I'm terrified of ever getting to that point again. Thanks again for reading and if anyone has any questions about the changes I had made the helped feel free to ask!



January - August 20

Hi Danyel. To answer your question, YES, I feel better when I'm strictly gluten free. I assume you got yourself off the antidepressants! I did the same, and felt better, but the withdrawals were murder. I went gluten free also. I feel much better now! I don't know what triggered the severe gluten problems - maybe those drugs did it?

After I went gluten free and was feeling good, I tried eating bread a few times - it made me really sick. Have you read up on gluten and celiac disease? My understanding is that gluten sensitivity is a "silent" disease - you don't notice it - but over time, the effects build up, and you can develop any number of diseases. If you know you are gluten-sensitive, consider staying completely off gluten. It's a tricky diet to learn. Gluten is a filler in many medications (might be why the BC pills made you sick), it's in beer, soy sauce, most packaged and processed food. It's in toothpaste and lotions. You have to read labels. Anything that says "flavorings," or "modified starch" or "maltodextrin" can come from wheat - it's best to call the company and check if it's gluten free. I've had bad reactions to foods that were labeled "gluten free." The government doesn't have really strict regulations yet, and allows a LITTLE bit of gluten in "gluten free" foods - some have more than others. You have to notice how you feel and carefully watch your diet. If the packaging says "made in a factory that processes wheat…." maybe you can't tolerate their level of contamination.

Same as you, when I get a dose of gluten, I'm sick for several months with pain and fatigue. I sometimes get reactivation of "shingles" - but this could really be celiac disease of the skin, also known as dermatitis herpetiformis. Doctors often misdiagnose this. It looks like shingles, but it isn't! It's a skin rash from eating gluten. I also get insomnia and mood swings. As I get older, I'm more sensitive. If I walk down the bread aisle at the store, I get asthma. I figured out this year that I'm allergic to oats. There was a big argument as to whether oats have gluten. The answer is no, but they have avenin, and 15% of celiacs are also allergic to avenin. Are you eating oats? Every time I did, I got skin rashes, and was sick for a couple months. I'm allergic to oats also! You say you are not strictly gluten free, and maybe if you clean up your diet, you will feel better! But, as you know, it doesn't happen overnight!

If you haven't already, google "Celiac Sprue" for information. There's also a good book called "Dangerous Grains" which you can get as an e-book online. You may already be familiar with these sites. Hope you feel better! Let us know how you are doing.



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