Lifedancer, A Question please/gluten....

Discussion in 'Fibromyalgia Main Forum' started by pam_d, Mar 12, 2003.

  1. pam_d

    pam_d New Member

    I saw on another post that you have eliminated gluten & are feeling better overall. I recently found out that milk products, soy, and gluten are problems for me. I know it sounds strange, but I'm doing well on eliminating milk and soy, but I'm having a heck of a time with gluten & wheat (and every other thing gluten is in!!!) I was never a "sweets" or milk person, but I almost crave those crackers, pretzels, bread, etc. I know all that starch is no good for me anyway, LOL, but I'm having a really hard time finding & choosing foods I can eat that would kind of satisfy the "grains" category that do NOT have gluten. Oats are out, too, right (gluten)?? Also, do you do a rotation diet? Do you have any suggestions for me as it sounds like you have successfully eliminated gluten from your diet, & reaped the benefits by feeling better. I'd appreciate any suggestions you & others have for me------I'm still trying to make the transition to a better diet!

    Thanks in advance,
    Pam
    [This Message was Edited on 03/12/2003]
  2. pam_d

    pam_d New Member

    ..bumping....
  3. VickyB

    VickyB New Member

    I have been trying to eliminate wheat from my diet also. Today I tried Peanut Butter Rice cakes with Peanut Butter spread on top. It was pretty good!!! I hope this helps you. Good luck to you!!
    Vicky
  4. pam_d

    pam_d New Member

    ...to thank you enough for all the great information? I hope you don't mind me calling upon you again for help!

    I have found a wonderful FM/CFS allergist here who tests for food allergies. I found that I was very allergic to gluten, even more allergic to milk, also to soy, most all nuts, eggs, some fish and the list goes on......the one I'm having the most difficulty with is the gluten products. I agree that the celiac website would probably help me a lot, also that I need good, comprehensive lists of what to eat & what not to. My allergist is helpful with this, but I need more! I do believe these unknown allergies (I was in the dark for probably years because I had no real IBS symptoms, so never suspected that food allergies could be a problem------just never connected the dots to link them with my FM pain & neuro symptoms) are much of my problem.

    The trickiness lies in the fact that I cannot have eggs, milk (and soy & almond milk are out--allergic), many of the things I could mix with gluten-free flours to bake or make pancakes, etc. Plus, things like brown rice, which I CAN have, I'm not supposed to have more often than every 4 days, on this rotation diet, the theory being that you don't want to get allergic to the things you ARE allowed to eat.

    I'm really bad at this; I'm allergic to so many things, it seems like it'd take a Herculean effort of planning & shopping & preparing to even begin to stick to this diet, yet it isn't lost on me that I won't begin to get well without it! And I am going downhill pain-wise from 4 years ago, when I first was dx'd; this tells me my food allergies have just been getting worse (just discovered that piece recently).

    Where are you located that has this wonderful bakery? How great that they offer support to celiac-sufferers. I am wondering if there's a celiac support group in my area; at this point, it could be a more valuable resource to me than an FM support group. I almost need someone to shop with me my first few times til I get a "rhythm" with this!

    Thank you so very much, and I hope you don't mind my long-winded rant about food allergies(!), or mind my calling upon you again for questions. I need all the help I can get, and I know I'm still kind of in denial about this---but trying to deal with it!!!

    Hugs,
    Pam
    [This Message was Edited on 03/17/2003]
  5. pam_d

    pam_d New Member

    You are a treasure trove of great information!! I was wondering about vinegars----I've been making my own salad dressings with lemon juice & different oils that I can have, but on this rotation diet I'm not supposed to have lemon/lime juice daily, so it's nice to think I could have rice vinegar or apple cider vinegar for a salad. You've given me tons of great suggestions! I also set up an appointment next week with the dietician in my doctor's office (I called for a referral, and they told me that help was available right in the office--I hadn't known!) who is going to provide me with ideas, recipes, brand names for the day-to-day management.

    I always get wonderful support from this board, but I have to say, I'm so very grateful for you taking so much time to provide me with detailed info. I'm trying to get past my denial about this, and get commited to doing this the RIGHT way! It really helps to have this support, Lifedancer---you're the best!

    Hugs,
    Pam
  6. tandy

    tandy New Member

    And I have to say that I DID feel better,symptom wise.(not 100% but alot better) The diet is very restrictive and I found it hard~(I think anyone would....your giving up alot!) I went on the diet suspecting celiac.I had severe IBS symptoms on top of FM and endometriosis~I lasted 2 months a little over,then stopped it~ The reason being,I had a endoscopy at that time,and my gasterentologist told me he seen no indication of me having celiac! So I'm back to eating the BAD stuff~ but its funny I felt best not having the bread,pasta,etc..
    Do you think I COULD have an intolerance that the dr. is'nt aware of? I wanna add too,that just in the two months I was on the diet,I lost 12 lbs!! Oh...I've slowly added it back on unfortunatly~
    I think i've heard before that theres no true test for celiac? so maybe my drs. wrong?
    What are your thoughts?
    Thanks!
    Tracey
  7. pam_d

    pam_d New Member

    I'm so new to this, I'm not much help. Lifedancer has provided me with a lot of info. I know what you mean, I've only been off gluten for a few days, I've already lost weight-----I guess because there's so little else I can eat, too! I can stand to drop some pounds, so I'm trying to see this as a positive in an otherwise very tough diet situation. About testing-----I had both skin & blood testing for foods. I have heard the blood's more accurate, as sometimes your skin just reacts from the scratch because you have sensitive skin. In my case, both tests showed gluten allergy. My milk allergy was the worst, though, with almonds second. My allergist is pretty well known in our region for the results he gets with FM/CFS/autistic patients, so I'm trying to get myself to a place mentally where I am strong enough to really follow this program. It's horribly tough, though....

    You know, I think you could still have a gluten allergy, without having celiac disease, the severest form (that shows visible intestinal damage). I went to the celiac sites just to get some diet info, etc. From reading, I can tell I do not have actual celiac disease, but a gluten allergy which I still need to treat so it doesn't get worse.

    Good luck to you, too, with this whole thing--

    Pam
    [This Message was Edited on 03/13/2003]
  8. pam_d

    pam_d New Member

    I agree with your findings----for me, the gluten (& my other food allergies) did not produce obvious intestinal problems. I never had IBS issues, so I made the (((wrong))) assumption for years that I didn't have food allergies! It's only now that I realize that my FM pain & symptoms have a lot to do with diet-----I just had never had what I considered (in my lack of knowledge or naivete) the "obvious" signs of food allergies. Live & learn, I guess!! Just wish I had figured out some of this earlier. When I started the Fibro symptoms, I saw a therapist for a few months who helped clients cope with chronic illness. She kept saying "Are you SURE you don't have a wheat allergy?" Of course, I didn't think I did then. She knew enough to realize food intolerances don't necessarily translate into stomach trouble.

    I'm trying to get in a better mental space with all this! I'm looking forward to my appointment with my doctor's dietician next week----hopefully, she's going to give me a lot of useful information on how to feel positively about this! And I agree, just the thought that I could actually start feeling better is enough to brighten me up. I'll share anything I learn....

    Thanks again for all the support! I'm visiting relatives til Sunday, so I won't be around. But we will continue to support one another with this effort! I don't think I'd be sane without the friendships & caring I've found here!

    Have a good weekend!
    Pam