anyone with celiac?

Discussion in 'Fibromyalgia Main Forum' started by blueeyedgrl73, May 2, 2009.

  1. blueeyedgrl73

    blueeyedgrl73 New Member

    if so..what are your symptoms?
  2. Shananegans

    Shananegans New Member

    My Celiac symptoms completely mock those of FM. Once I went gluten free, all of the symptoms went away.

    Just to list out a few: muscle pain (really really bad pain), spasms and weakness; exhaustion; diarrhea/constipation; stomach cramping; headaches; bloating (like a buddha belly); nausea; brain fog - unable to concentrate; what appeared at first to be restless leg syndrome (this goes away if I haven't been glutened but it's the one symptom that stayed the longest); swelling of the legs and arms (which seems to be getting better the longer I'm gluten free) and that's all I can think of at the moment.

    I was originally diagnosed with FM in 2000 to find out recently I actually have Celiac. I posted some info about celiac that you can find if you look through my profile. It's very useful info.

  3. blueeyedgrl73

    blueeyedgrl73 New Member

    i think im gonna have to research and learn about what foods contain gluten. i know i have symptoms when i eat bread products....i can get the buddha belly (so funny you said that shananegans) lol! also burning symptom in my stomach and heartburn. i dont seem to have to these symptoms when i follow a low carb diet...but that diet is really hard to stick to. where does one buy gluten free foods? just something i might try. thanks, Blue
  4. Shananegans

    Shananegans New Member

    They do make gluten free breads, cookies, pastas and all sorts of stuff. I shop at Wegmans for most of my food but you can also shop at any local co-op or health food store (depending on where you live). My area only has one health/vitamin store, so thank goodness we have a Wegmans. It does make eating out a lot more difficult (I also have other food issues so now it's even tougher, I have to lecture the waiter/waitress everywhere I go... lol) but if you do feel better on a low carb diet, Celiac (or at least a gluten intolerance) might be something you want to consider as a possibility.

    It took 3 years of trial and error for me to figure out I have Celiac and it's still hard to eat completely gluten free because it IS more expensive (and I love my bread and pasta, and we are super broke... lol). And it's a little more interesting for me because I am also allergic to rice, which is the main substitute for everything you can't have... But so far so good and I feel a million times better than I have for the last 10 years.

    good luck to you! I hope this helps.
  5. shelbo

    shelbo New Member

    How did you discover you are allergic to rice? Thanks. :) Shelbo
  6. Shananegans

    Shananegans New Member

    Funny story actually. Rice is a staple food for my family and has been since I was little (as we have never had a lot of money and it's super cheap), so I am guessing this is the reason I became allergic, as we tend to become allergic to the things we experience the most.

    Anywho, I have eaten rice of all varieties all my life and the first time I had a reaction was in 2005. I had made a large batch of white rice with all sorts of spices on it and ate some, within about 30 minutes I started getting itchy and my tongue and lips started to get puffy, not too bad of a reaction but enough to notice. At first I thought it was something I put on the rice since I had been eating rice all my life and never had a reaction and I did use some foreign spices my roommates had... So a few weeks later I went to a sushi bar with a friend and ate rice, within 15 minutes I was all swollen again... So then I think to myself "well maybe it was something else at the sushi bar", since I had only eaten there once before. So for the final test, I made another batch of rice at my house with absolutely nothing on it, just plain white rice.

    A friend of mine was there in case something went wrong and it really was the rice. Sure enough, within about 5 minutes my mouth swelled, tongue, lips, my throat started swelling closed and I went into anaphylatic shock and my friend rushed me to the hospital (which was very close by) after filling me full of benadryl before me throat closed completely. That action pretty much saved my life the docs at the ER said...

    But here's the kicker, later when my allergist ran blood tests to see if I was allergic to white rice, they came back negative. But the doc was kind enough to tell me that these tests are not fool proof and just because it came back negative doesn't mean that I'm not allergic and being that the 3rd time I ate it after the 1st reaction, I went into anaphylatic shock, I should avoid it at all costs. So that's my rice story. Strange indeed and rare for American's but it does happen.

  7. shelbo

    shelbo New Member

    Wow! Anaphylaxis from rice...that's scary!

    Your experience just goes to show, too, that we should listen to our bodies...tests aren't always accurate!

    What a nightmare for you this must be... like you say, so many gluten-free products are rice based! I am so reliant on rice.... I better cut back a little in light of what you say! There are always potatoes but I'm pretty sure they bloat me...

    One thing I have found which I love is quinoa...have you tried that?

    I have also found buckwheat pasta as well which is gluten-free despite its name...have you tried that.... Going gluten-free makes you discover food you never knew existed...

    I just looked at my supplements and some have rice as a filler.... it must be a nightmare being allergic to gluten and rice! Yikes!!

    Shelbo :)
  8. Shananegans

    Shananegans New Member

    Being allergic to rice definitely makes it interesting! Also makes it a bit more expensive for me and it also just means that I have to be more careful when purchasing gluten free items from bakeries and whatnot because most of them use rice flour as a replacement because it's easier than the rest of the flours. So now I make 95% of my food at home.

    I have tried quinoa but it's hard to find in grain form in my area, we don't really have a lot of health food store and no co-ops and even though Wegmans has been great, they don't have everything.

    I will admit I do get frustrated at times because I have to read every label no matter if it says it's gluten free or not... but at least I know what I have to look for. And at home, we don't eat rice at all ever and luckily my boyfriend doesn't mind because he doesn't really like rice anyways so it all works out...

    I use buckwheat a lot because it's another flour you can pretty much substitute exactly for a recipe, as long as you don't mind it's taste, which I don't. And it's much cheaper than some of the other flours.

    And luckily so far I don't have any issues with potatoes. I think I would go crazy if I did! I love potatoes and we eat them with pretty much everything.

    Oh and they make a corn pasta too. At first the texture is a little strange but once you get used to it, it's a fair replacement.

    I have definitely learned to listen to my body over what the docs say. If I know something effects me, I just avoid it. I don't need that inconclusive diagnosis, I just know what I can and cannot do. And I will say, this is much better than being in pain all the time! lol.

  9. mujuer

    mujuer New Member

    We have been gluten free for almost nine years now. The symptoms are bloating and gas and usually a rash covering your trunk and arms. Some people start loosing alot of weight due to nutrients not being absorbed correctly. I would say the gas is the biggest indicator. Bette Hagman is "the" guru of gluten free cooking and has many cookbooks out there and the first part of her books are commited to what gluten intolerance is, what foods it is hidden in, how to set up your pantry and tasty recipes. there is alot of good products now on the market that are gluten free. We are so lucky to have a full grocery store with just gluten-free items. we walk in and don't have to read any labels and it is great.

    Eating out is a trick but can be done. There are alot of restaurants that now have gluten-free menu's or items and most wait staff are happy to check. at home, i cook mostly a vegetable, a starch and a protein. there are many, many gluten-free pastas to choose from now to make recipes with. raw or steamed fresh vegetables are hard to digest for my family also and i think that is due to the celiac. I hope some of this helps. p
  10. blueeyedgrl73

    blueeyedgrl73 New Member

    Thanks to everyone for their replies! I have been doing a low-carb diet for a few days now and I can tell a difference in how I feel. I'm hoping I will see some benefits of weight loss with it too...I did this a few years ago and lost a lot of weight. I really do think breads and cereals do cause some of by digestive problems. Thanks again! :) Blue