Can This Diet Help Even If I Have Cfids / Fibro Too ?

[marciab]

Hi all, I have been tooling around here for awhile now, but I really need to ask a specific question. While I am here, thanks to all of you for your help. I could not have made it this far without you.

I am 50 years old and have been disabled with CFIDS and Fibro for 16 years now. I had all kinds of testing done 16 years ago, including the Mayo Clinic. But, nothing definitive and no mention of celiac. I finally saw a CFIDS specialist after 2 years, who based on my medical history and his testing, diagnosed me with CFIDS and Fibro and put me on disability so I could take care of myself.

I started the celiac diet along with the food allergy / sensitivity diet 6 months ago because I had constant stomach cramps for the past 2 years and none of the meds helped. Endoscopy showed hiatal hernia and erosive gastritis and colonoscopy showed diverticulitis, colon polyps and hemorrhoids. I probably have gastroparesis, even though results were neg. Upper GI was normal.

This diet has calmed down my stomach, helped a little with the fatigue and the brain fog, stopped me from feeling hyper and actually stopped my jerking for several weeks in the beginning.

I understand now what undiagnosed celiac can do. And if my GI doc had done a celiac biopsy while he was in there and it came out positive, then I would have more hope. What do you think, is there a chance I will start feeling healthy after a year or two on this diet ? Do my endo and oscopy results point to celiac ?

Sorry about the length. I have been holding onto these questions for awhile now : ) Thanks again

[Guest nini]

your positive dietary response is enough of an indicator that you need to stay off of gluten. Regardless of whether it is Celiac or Gluten intolerance, the treatment is the same. The gluten free diet. And yes, it will help Fibro and CFS...

If you have been gluten free for any length of time any testing now is likely to be innaccurate, so go with your "gut" literally and stay off the gluten. Listen to what your body is telling you.

It will take your body time to heal but you will eventually feel better. I do still have some of the fibro pain and fatigue, but NOTHING like what it was before my dx. I've been gluten-free for almost 3 years now.

[Nancym]

I'm doing the SCD diet not just to calm down my gut but in the hopes of getting some of my autoimmune issues under control too. I am also casein intolerant. :\ But I've had a lot of improvement since going on SCD. www.breakingtheviciouscycle.info for more info.

[i canary]

I have Fibro and Celiac Disease - the pain levels went way down after I started the gluten free diet. Next week will be 2 years since I have been gluten free - yes the diet does help.

[marciab]

Thanks for your replies. Can u tell me what u can eat on the SCD diet ? I am already unable to digest meats, eggs, soy, nuts, dairy and corn.

Good to hear this diet has helped some fibro people.

I'm confused about the immune system disorder part of CFIDS. Major brain fog here .... But, if this diet is helping other immune system disorders, I don't know why it wouldn't help this one.

thanks marcia

[Ursa Major]

Marcia, I have had what I thought was fibro all my life, but really, it was Celiac disease and other food intolerances that were causing the symptoms.

When I stopped gluten containing foods in October, initially all the pain stopped (and I was on codeine 24 hours a day just to barely manage), and I stopped all painkillers.

But when my intestines healed and started absorbing things again, the pain returned. In the meantime I figured out that the pain is about 70% better (no painkillers needed at all unless I make a diet mistake) by cutting out all lectins and only to ingest very small quantities of salicylates. I think it will get even better with time, as complete healing at my age can take years.

The lectins (of which gluten is one) were causing gastrointestinal problems, headaches and severe pain and dysfunction of my hands, feet and knees especially. The salicylates will cause a general, burning body ache (even my skin will ache). The nightshade family (potoatoes, tomatoes, peppers, eggplant) contain high amounts of both lectins and salicylates and are especially bad. In the meantime (on a cruise of all places), I found out what peppers do. They'll cause a horrific eruption of pus filled pimples (huge ones) on my nose and chin (and I mean covered!).

You may be having reactions to the additives in meat (hormones, antibiotics) rather than the meat itself. One of my brothers can only have chicken, turkey and game, he gets awful body aches with commercial beef and especially pork. And he only eats organic chicken and eggs.

Follow the links in my signature to find out more about lectins and salicylates, if you're interested. I ordered the e-book from the lady with the salicylate site, and it has extremely valuable information I'd never have figured out on my own. I wouldn't be safe without that info.