Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Let's Help The Fm People On Fibrohugs

Jonesy

By Jonesy
in Related Issues & Disorders

Recommended Posts

Jonesy Apprentice
Jonesy
Posted

:D

I guess you might say I'm on a crusade tonight. I just came from the forum on Fibromyalgia. I registered over there some time ago because my DD has FM. I went there to learn more about it, and never went back.

Tonight I got to thinking I should check out the forum over there to see if they are aware of the link of FM to celiac disease. I read page after page of posts and it seems they are not talking about celiac disease at all, and celiac disease is not on the list there of Associated Diseases.

So I plunged in, introduced myself and suggested they check into it. I didn't post a link because I didn't know if it was allowed. But here it is allowed, so you can all go over to Fibrohugs, go to the forum and see for yourself. Sign up, tell them who you are and tell them about celiac disease. I know everyone with FM doesn't also have celiac disease, but they should know about it.

Open Original Shared Link

If the administrator gives me permission I will post a link there to our forum so they can read here all that is written by Fibro's about the link to celiac disease. Wouldn't it be great if we could help them feel better by the gluten-free diet.

Some of you seasoned posters would do a much better job than I did because you are more knowledgeable. My name over there is mejco and I just posted about 5 minutes ago in the "introduce yourselves" topic. You can read that if you want, but I'd like you to browse around and see that they haven't made the connection. Can't you just imagine how many of those FM's are fellow Celiacs?

I hope I did the right thing. It sure felt like the right thing to do - to tell them about it, and hope they take it seriously.

P.S. Scott, their site isn't nearly as fast loading as ours, nor as easy to navigate.

Good job, Scott.

Maryellen

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nanjee Rookie
Nanjee
Posted

Hi Mary Ellen :)

I have visited the site you mention - and there is not a whole lot of research type info there, I agree.

I am new to gluten intolerance, but not new to FM - have had it for 20 years.

It certainly was made worse by the gluten intolerance, and I am fighting every day to regain some of my strength - one day at a time ;)

There is a very good site that is filled with research, and celiac disease, as well as gluten sensitivity is talked about often. Lots of research from leading MD'sd in the FM world .... and a VERY active message board. The message board is very active - and messages are answered many times as fast as you post them.

LOT's of members with celiac and gluten issues.

You can do searches for medical research, as well as searches on the message board.

I don't know the rules here well enough yet ---- I hope it is alright that I post the web addy ????

www.immunesupport.com

May be helpful for those of you who also suffer from FM ???

I have referred many people from there to this site - they were so thankful for all of the wonderful research here at celiac.com :)

Hugs,

Nancy

jenvan Collaborator
jenvan
Posted

thanks for that site. i will ck out--trying to figure out how to improve my own fibro...

Jonesy Apprentice
Jonesy
Posted
  • Author

Thanks Nancy

That's great information! Appreciate it.

Can you tell me if it's allowed to post that link on Fibrohugs? Sound to me like you are saying that you did, since you referred them to the site, you must have posted the link.

Thanks for your prompt and helpful reply. :)

Maryellen

mouse Enthusiast
mouse
Posted

I was diagnosed around 25+ years ago with FM. Every pressure point was super sensitive and they tell me that I have a high pain tolerance. I sure did not feel that way at the time. Before we down sized (June), I had a special made pool and spa that really helped relieve the pain. I had weights, etc. that the physical therapist had instructed me to use. After I went gluten-free, my pain slowly diminished and the areas on my thighs are the only places that are still tender on a daily basis. I would say that being totally gluten-free took away about 80% of my pain, which was something I did not expect, but was certainly welcomed. I don't remember how long it took, but I would say about 9 months to a year.

Armetta :P

watkinson Apprentice
watkinson
Posted

Hi Jonesy,

Thank you for taking the time to educate fibrohugs on celiac disease. I must say I am not shocked to find out that they seem to not know about the connection. I have suffered FM ect. for about 30 years (since Jr. high school). When I was diagnose a celiac I did my own research and found the connection. Since going gluten-free about one and a half years ago, my FM, restless leg, chronic fatigue, peripheral neuropothy, (nubbness and tingling) has nearly gone away! :D I believe that someone with Fm would benefit greatly from going gluten-free even if they are not a celiac. I will also visit the site and see what they have to say. :)

Again, thanks,

Wendy

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,815
    • Most Online (within 30 mins)
      7,748
    lbksunyoga
    Newest Member
    lbksunyoga
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Royal Caribbean Only, Please

      By AuntieAutoimmune · Posted

      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Scott Adams · Posted

      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      Gluten free/ non dairy , low calorie pudding

      By Scott Adams · Posted

      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      Royal Caribbean Only, Please

      By DebJ14 · Posted

      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...