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Celiac/Gluten allergy and Fibro
7 Replies
January - January 22

Hi. I'm new here, and this is a great site. I appreciate the responses I've gotten. It's comforting to see so much support, and perhaps I can help someone else.

Might I start a discussion about celiac disease, gluten allergy and fibromyalgia? I think I saved myself from the jaws of death by going gluten free! I was so sick from surgeries + drugs + fibro - just getting sicker. I suspect it ruined my GI system - or it was already ruined because maybe I was born with celiac disease that never got diagnosed? I didn't have the GI symptoms they look for.

I saw an article about a man on a crazy 30-year medical merry go round for chronic pain; it turned out... he had celiac. I got to researching, read Dr. James Braly's book Dangerous Grains (I highly recommend). I went gluten free and it helped a lot - other people remark on me seeming much better. I still have fibro - but it's much worse when I eat gluten. I have a theory that gluten might be a problem for many fibro folks, and I've been on a soapbox for several years!

I've had a hard time getting really solid information about celiac and gluten, though it's getting better. (Thank you Jenny McC. and Elizabeth H.) It's not taught in American med schools, and most doctors are unfamiliar with it. They refer you to a GI doctor. But the GI MDs don't know about the many different forms celiac and gluten allergies can take.

Celiacs are allergic to gluten, found in wheat, barley, rye and maybe oats. Some have trouble with other grains.
The small intestine (which absorbs all the nutrients that run your body) sets up an allergic auto-immune reaction, and the cells die off in patches. (You don't have pain, and may have no symptoms for decades. It's a silent disease.) Meanwhile, you can eat all you want, might even be overweight, but your body can't absorb what it needs to build and repair cells, and keep running properly. Children can't properly build bones and teeth, and may have behavior problems. ANY system in your body can break down. Your skin, brain, teeth, bones, immune system, intestines, endocrine system, muscles, etc. ANY SYSTEM.

Dr. Braly has several pages in the back of his book listing symptoms and diseases linked with celiac - like diabetes, auto-immune diseases, skin rashes, bad teeth, depression, osteoporosis, tumors, migraines, painful cracks at the corners of the mouth, etc. Many things I see on this site.

I just want to say, gluten free takes some education and some hard work. But it helped me so much it is worth it.

This post is too long already. Any feedback out there?

 

kvc33 - January 22

I was tested in December for food allergies and gluten is one of mine as well as peanuts, dairy, eggs, wheat, spelt, sugar, and pineapple. I have been on the allergen-free diet for a month now. So far I haven't seen any real change. I've lost a few pounds and I don't think I'm urinating as much as I was before but the exhaustion and other symptoms are the same. I'm really hoping that it will take affect soon as I'm craving sugar and bread and it's hard to stay on it. Which symptoms did it help with for you and how long did it take? Many people in the diet section have said that going gluten-free made a big difference for them. Have you tried giving up diary and soy as well? They are common allergens.

 

January - January 22

Hi kvc3. gosh, you have a lot there! How did they test you? I've heard conflicting things about validity of food allergy testing. I gave up ALL cereal grains except rice. I check everything, even meds, for gluten.

It took a year to notice a difference (that's a long time, but I was determined). I got painful rashes when I ate the wrong thing, so that helped me figure it out. It takes 3 months for your intestine to heal and just 1/8 tsp. of gluten can get you irritated again. If you're celiac, you have to quit all gluten. The diet is tricky. Do you check things like soy sauce, soups, anything processed? A lot of chemical names = "gluten." You have to learn all the hidden sources. I'm very strict about it. Think also about cross-contamination. It's hard to eat out anywhere.

The craving! My theory is if you are craving it, for sure it means trouble. G-free, I don't crave anything. Occasionally, I try something new - and if I start feeling bad - depressed, more pain, can't sleep - it usually means there's something in the new food. (Recently, a problem with so-called rice cakes. The company said "Gluten has not been officially defined by the govt." - so they can say "gluten free" when maybe it's not free of all grains celiacs need to avoid. They told me their definition of gluten free didn't include wheat.) I crave those bad foods until my system is back to normal.

I didn't give up dairy or soy. Just gluten. Hang in there and give your diet a year. Maybe check somewhere else about the testing? If you are allergic to all that, bless your heart! Good luck with it.

 

kvc33 - January 22

My Mom, sister and niece are all very sensitive to dairy, gluten and sugar so I come by it honestly. Spelt is an ancient wheat so that goes along with the wheat allergy. I forgot to mention corn. Can't have that either. I'm not eating much that comes out of a package and am reading all labels. A lot of the rice products have egg or corn in them so I can't have some of the ones out there. A year is a long time to wait for results! Don't know if I can do it.

 

January - January 22

kvc33 - I sympathize. You have quite a load of allergies. Other people have posted similarly. Was just reminded today that I tested positive for many, many food allergies as a kid, but parents didn't follow up with a diet... For me, just avoiding all the cereal grains (even spelt and quinoa) has helped. I eat rice and tapioca. My diet is limited, so I take a lot of good vitamins, minerals and supplements. To replace sugar, you might be able to use stevia, honey or agave? I eat lots of soy products and whey protein. There are several diet related posts here that I've found interesting.... I HATE diets.... but gluten free saved my life.

So good luck to you, I hope you can hang in long enough to relieve some symptoms - that will motivate you more.

 

Cher0208 - February 5

Hi everyone,

My 25 years old and have been diagnosed with Fibromyalgia and Epstein Barr. I went to a Pain Management doctor and she had me see her Nutritionist. He tested my body's reflexes using a technique called Nutrition Response Testing. Please google it. Anyway, he could tell that I was gluten, corn and soy sensitive, that I had a virus (this was before the blood results came back positive for Epstein Barr Virus) and that a bunch of my organs were being affected and were weak. That day I immediately stopped eating the 3 foods I was told to completely abstain from. And for a week I was about 90% pain free. I'm not sure what happened because after a week the pain came back with vengeance. However, I continued on my diet and took the Standard Process supplements that he gave me. I saw him every 2 weeks and each time my body would show improvement and the dosage would always change for each supplement. So just last week I went back and my body showed no sensitives which is what happens if you will let your body heal and then you can try reintroducing the foods. Well my favorite food is bread and I went nuts this week even though he told me not to eat it more than 1-2x per week. I feel like crap. Pain is back, throat is tight, I am in a complete fog. So it looks like we have to get to learn our bodies and make constant changes and adjustments to what we eat and how we live. I read a book a while ago that I highly recommend. You Can Heal Your Life by Louise Hay. I came across this book way before I had any symptoms and I'm grateful I did because it has helped me cope. Louise Hay says Fibromyalgia is caused by the repeating thought pattern of extreme fear and being tense. I have had severe anxiety my whole life and for me that statement proves true. In the book she says that every dis-ease is caused by a thought pattern that we have and by recognizing your negative thoughts and changing them you can heal yourself. I'm trying to hit this thing from every angle; nutrition, exercise, meditation, traditional western medicine and praying like I've never prayed before. I don't accept that this dis-ease cannot be "cured". No, the doctor's don't have a pill that will make it go away forever. But we can heal our minds, bodies and spirit. It takes time to get better just like it took time to get sick. I'm looking forward to knocking this thing back into the nothingness from which it came. Now how is that for a long post!? Good luck to you all and be sure to look up Nutritional Response Testing. Hopefully you have someone in your area who does it.

 

January - February 8

Hi Cher - I had Epstein Barr too, and I think that was when it really started to go downhill. In fact, a few times I've taken antivirals for brief periods, and I felt so much better overall!

Louise Hay is awesome, and I highly recommend staying positive. My only problem with her approach and its proponents is that they are completely mental (I mean thinking-mental, not crazy-mental! LOL!); while I respect the approach, and it works, I have also found a lack of emotional compassion in these circles.

Cher, you might also like Carolyn Myss. What I like about her is she addresses those times when the positive thinking doesn't rid you of pain, and you just have to live out your karma the best you can. If you find yourself in a place like that, emotional support, compassion and understanding is very, very important.

good luck to you!

 

Cher0208 - February 8

Hi January,

Thanks for writing. So you had Epstein Barr too? Well, my pain management doctor was the one who found it. My levels were 7 point something which is pretty high. I had gone to so many doctor's before her who wanted to treat me for depression. I went to my GP after finding out about the Epstein Barr and my GP tells me that she, as well as many other doctors don't believe in Epstein Barr as a "chronic virus" or Fibromyalgia. Looks like I need a new GP. She shouldn't say that unless she has any other suggestions besides anti-depressants. But anyway, I am just doing the best I can with what I eat and how I treat my body. I try to eat anti viral foods daily. So do you still have Epstein Barr or has it gone away?

Louise Hay is great but it's true, I'm doing affirmations until I'm blue in the face but the pain is still here. I do sometimes consider this being some serious Karma. So I am very interested in a book by Carolyn Myss. I love reading! I'll pick it up in the next week or so. Right now, I'm reading The Guru In You by Yogi Cameron. I saw him on Ellen Degeneres not too long ago. It doesn't speak anything of specific illnesses but about different energy imbalances that you might have, how to figure out which one you have and what you can do for it. It suggests different breathing exercises, yoga postures and times when it's best for you to eat and sleep. It's based on Ayurvedic medicine which is a system of traditional medicine native to India and practiced in other parts of the world as a form of alternative medicine. Everyone is different and what might work for one won't work for another. So I'm looking at everything out there to see what my body (and mind) respond to the best. Good luck to you. And I will try to catch up with you after I read something written by Carolyn Myss.

 

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