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Does Anyone Else Have Ra Or Myositis, Lupus

shayre

By shayre
in Related Issues & Disorders

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shayre Enthusiast
shayre
Posted

Hi. I have celiac disease, along with Hashimotos thyroid and PCOS. I was just diagnosed with RA, borderline Lupus and likely dermatomyositis (autoimmune of the muscle tissue) that has not tested positive. I have been gluten-free for over a year, but these other issues are bringing me down. I just need to know if there are others of you suffering out there too, before I launch into my story and questions!

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cassP Contributor
cassP
Posted

Hi. I have celiac disease, along with Hashimotos thyroid and PCOS. I was just diagnosed with RA, borderline Lupus and likely dermatomyositis (autoimmune of the muscle tissue) that has not tested positive. I have been gluten-free for over a year, but these other issues are bringing me down. I just need to know if there are others of you suffering out there too, before I launch into my story and questions!

omg- you have my full sympathy & compassion.. most of us only have to deal with 1-3 autoimmune diseases- and yours sound challenging. i DO consider myself very lucky that i dont have Lupus or RA

i have Celiac, Hashimoto's, and Grave's. and they're really not bad at all compared to others. but the "push-pull" im getting with both thyroid diseases can be a bit much sometimes :(

i had some hyper episodes 2 weeks ago- and now i seem to be going back more hypo- (and im not talking energy & weight wise)- im talkin gasping for air.. sitting on the toilet in pain, heart palpitations, blah blah blah,

and depression & anxiety... i had a breakdown today (on the toilet) after calling my endo's receptionist- and she said she couldnt mail me my results yet. does THAT sound like the end of the world? not really- but i sobbed and sobbed in the shower like the world had abondoned me.

but all that being said, i really dont have it too bad. sometimes, these 3 situations can really ruin the rest of my day... but mostly im pretty lucky.

i hope others can have better advice and similar stories for you. hope you feel better soon!

ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry you have to deal with all this. I wish I had some answers for you. I did have RA and was thought to perhaps have lupus along with MS. For me being super, super strict with the diet did resolve those issues, thankfully. But I also had to avoid gluten grain alcohols and vinegars and stayed out of restaurants for years to get that resolution. Soy will also flare my RA symptoms so if you are still consuming soy you may want to try dropping it for a bit to see if that helps.

chasbari Apprentice
chasbari
Posted

Originally DX'ed with RA, Sjogren's Syndrome, high Lupus indicators but Doc didn't feel it was actually full blown, also Reynaud's as well before finally DX'ed celiac. Once treated with very strict no grain diet all others have gone into remission to greater and lesser degrees. Still have chronic dry eyes from SS but the RA is so much better and I take no daily meds for it. After I went grain free the worst episode I had to anything was when I accidentally ingested soy from a cooking spray. It was even worse than when I did finally ingest gluten by mistake later on. I can now read a label and spot the bad stuff at fifty yards with a blindfold over one eye.. but don't really need to because I eat almost no processed foods.. but I am still curious to see what the rest of my family is eating so I still read...

shayre Enthusiast
shayre
Posted
  • Author

When you say "no grain", does that mean rice too? CassP, I can totally identify with the meltdown. I am about there lately. Good grief, what did people do before there were identifiable autoimmune diseases? I honestly can't tell the difference between a flare up of other autoimmune issues and be glutened, so I have no idea what to do, or how to help myself. I don't know if it's those things...or other intolerances like corn. Too tired and in pain to work out...too tired and in pain to play with my kids...too tired and in pain to give my husband any attention. Ravenwoodglass...you are everywhere! God Bless ya:) I will have to try de-gluten my kitchen to see if that makes any difference, although the task seems overwhelming and impossible. I don't get D like most of you when you are glutened, so I just can't tell what is what in my world...and so I can't really take action to solve it. BUT...I'm trying by being on this site and asking a million questions!

mushroom Proficient
mushroom
Posted

It IS a lot tougher when you have no identifiable reaction to associate with gluten consumption. Unfortunately, it does mean that you have to work that much harder at eliminating it because you can not identify where it is coming from :unsure: It is, however, not a matter to take lightly because from your reading I am sure you realize how much worse you can get if you continue to consume it. I have a lot of other intolerances too, and could not tell before I quit gluten whether my symptoms were coming from flour or corn - turns out it was both. But before you can figure out if you have other intolerances, you do have to get rid of the gluten, very thoroughly. Have your husband read these posts if that is what it takes for him to take it seriously too and start helping keep the kitchen gluten free. If you don't want picky eating children, the sooner you let them know that they eat what you give them or they go hungry, the better. Like they always have to eat some of everything on their plate :ph34r: even if it's only one bite. And if they are gluten intolerant themselves what is on their plate is probably not going to hurt them :) Sure, there will be some temper tantrums, but if you start feeling better yourself (and I am sure you will once you get rid of the gluten) you will be better able to handle them. Shauna has given you some links to some great gluten free blogs. Gluten free cooking doesn't have to be difficult or even that much different from regular cooking. You just don't use regular flour for gravies and sauces. Otherwise your basic meat, vegetables, potatoes, rice, gluten free pasta (try Tinkyada), spaghetti sauce and such is all gluten free. And if you invest in a crockpot you can put everything in one pot in the morning and cook it all day have it ready when your husband comes home :)

cassP Contributor
cassP
Posted

When you say "no grain", does that mean rice too? CassP, I can totally identify with the meltdown. I am about there lately. Good grief, what did people do before there were identifiable autoimmune diseases? I honestly can't tell the difference between a flare up of other autoimmune issues and be glutened, so I have no idea what to do, or how to help myself. I don't know if it's those things...or other intolerances like corn. Too tired and in pain to work out...too tired and in pain to play with my kids...too tired and in pain to give my husband any attention. Ravenwoodglass...you are everywhere! God Bless ya:) I will have to try de-gluten my kitchen to see if that makes any difference, although the task seems overwhelming and impossible. I don't get D like most of you when you are glutened, so I just can't tell what is what in my world...and so I can't really take action to solve it. BUT...I'm trying by being on this site and asking a million questions!

generally when people say "grain free", i assume that's all the starches including rice. that being said- for me anyways, not all grains are created equal. i seem to be ok with moderate amounts of rice products (and oat actually-but proceed with caution)... but corn kills me, and even potato starch & tapioca starch are crappy.

your "identifiable" symptom of being "glutened" or having an additional food intolerance just might be the flaring up of your RA & stuff.

im sorry you're in so much pain sometimes. i hope things change for you!!!

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chasbari Apprentice
chasbari
Posted

I tried rice early on and was having major issues with blood sugar regulation as well as continued joint pain. It was only when I went totally grain and nightshade free that my RA seemingly disappeared. Even my hands seem to be less deformed than they used to be as a result.

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