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Fibromyalgia Support Group Orlando
20 Replies
Jocelyn - May 4

Hi January,

I forgot about doing that. I tried making lots of spaces etc. If I find the site again, I will do that :) I must be in fibro fog clouds :) How are you feeling?

I just ate a gluten free english muffin that had multi seeds. I guess there was a seed I am allergic to. My lip swelled up after I ate it. I took so meds for that and it is not going down. Geesh....I read the ingredients and I've eaten all the seeds except one. It is a China Seed, whatever that is. Maybe that is what caused it. Having so many allergies makes it tough, but I will get it straight.

Take care and let me know how you are doing.

 

January - May 5

Never heard of a China Seed! I googled it, and got all sorts of different seeds from China. Did you mean Chia seed? They are supposed to be gluten free -- but there's always the risk of contamination.

I ate Quaker rice cakes that said "gluten free" on the package - and got a bad reaction. When I called the company (Quaker oatmeal company) to complain, I got quite an argument from the rep on the phone - who told me that the government still hasn't legally defined "gluten free" so even if it says gluten free, it might have some gluten in it, and since the rice cakes were made at the factory which also makes oatmeal, it could have been cross-contaminated with oats (which I AM allergic to; whether oats have gluten or not is still up for debate!)

Quinoa is a grain that some people say is gluten free, but I had quinoa at someone's house and got a reaction from that! Here's what I found online about it:

"Quinoa, in the standard, raw form is gluten-free. Gluten is a protein that is found in grain products such as wheat, barley and oats. There may, however, be some risks to gluten exposure with certain quinoa products such as flour and flakes. These products go through processing plants that may use machines for wheat products and quinoa product thus causing cross contamination."

I think that applies to everything! We have to contend with gluten allergies, but there's always the possibility of contamination. I believe the label "gluten free" legally allows a small amount of gluten - so if you're very sensitive to it, you could still get sick from a "gluten free" product. And it's also possible we have additional allergies. I guess trial and error is the only way to find out what foods are safe. It is, literally, a PAIN, though!! Sorry to hear you had a reaction and I hope you are feeling better!! Do you want to say what brand of muffins gave you the reaction?

I think the more of us who call these companies and complain the better! If they are selling a "gluten free" product, and we have reactions, we need to call them up and TELL THEM. Perhaps there's a way we can file a complaint with the FDA too. And perhaps we could write our Congress people and tell them how annoying it is to be constantly dealing with reactions to food because it is mislabeled!

 

darnold - August 7

I also live in winter garden and I am looking for a support group if you find one please let me know.
Thank you

 

darnold - August 7

Florida Hospital in Altamont Springs has a support group.
Address is 651 East State Rd. 436
Time :7 -9pm first Tuesday and every Thursday
Contact Edie Hardesty
Phone 407-253- 4857
Hope this helps the one's who live in the Orlando area.

 

ReneeA - August 28

Hello fellow fibro girls/guys,

The support group at Florida Hospital no longer exist; I just got off the phone with them (today: 08/28/17) and they do not have any support group for fibro (i.e., chronic pain, etc.).

I'm in the Orlando area and would love to start a support group. Even an informal group, talk over coffee or ? It's so difficult with this condition, no one knows what it's like other than those who have it. I'm sure we could help each other with information on coping and going about our daily lives. Although this forum is helpful, I would love to have a "real-time" discussion with another fibro gal (or guy).

Please let me know if anyone in the greater Orlando area is interested in meeting.

Thanks and best to all.
Renee

 

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