fibromyalgia and celiacs

[terry]

does anyone have fibromyalgia and celiacs? I discovered my ?celiacs when I removed wheat and gluten to help my fibromyalgia. When tested for celiacs I had already removed wheat and gluten so my blood tests were positive but the biopsy was negative so I was told it is not celiacs. I have all the symptoms of celiacs right down to a weight loss of thirty-five pounds which I did not need to lose. I find eating any wheat, gluten, or dairy products causes severe pain and increases my fibromyalgia pain. my children even tested positive with the genetic makeup for celiacs yet they are telling me to try to reintroduce wheat and gluten into my diet. What do you do when the medical community does not listen to you?

[aklap]

Hi Terry!

Welcome!

I personally do not have fibro. It is not uncommon for fibro symptoms to vanish on a GF diet! Fibro is one of those "catch all" diagnosis. If the docs don't know what to do you...they'll throw you in there.

When tested for celiacs I had already removed wheat and gluten so my blood tests were positive but the biopsy was negative so I was told it is not celiacs. I have all the symptoms of celiacs right down to a weight loss of thirty-five pounds which I did not need to lose. I find eating any wheat, gluten, or dairy products causes severe pain and increases my fibromyalgia pain.

This too is not uncommon. Many people have positive blood work and negative biopsy and have been told they don't have CD. In reality - it's correct. By today's standards & definitions (which need to change), CD is damaged villi (the hair like structures that absorb nutrients) in the intestine. So - when the doc tells them it's not CD and to keep eating gluten - they still feel like crap and go on wondering why!

Research is starting to show that CD is just the tip of the iceberg in the whole spectrum of Gluten Sensitivity or Gluten Intolerance. Just because you don't have CD doesn't mean gluten does not affect adversely.

Here's a handout from the Gluten Intolerance Group discussing GI vs CD: http://www.gluten.net/downloads/infopackets/Gluten%20Intol%20not%20CD.pdf

It sounds like your are on the right track (going GF & CF). The most of the medical community is not up to speed on GI or CD yet. They are still stuck in the dark ages when CD is thought of as RARE - 1 in 5000. HA - it's more like 1:133! Ultimately the choice is up to you...do you listen to the Docs and still keep feeling like crap...or do you listen to your body? If you feel better off of gluten & dairy...so be it!

I bet if you went to the doctor and said..."Doc, I get heartburn everytime I eat onions". I bet he'd say "Well, don't eat onions!"

I wish you well Terry! I hope you stick around and read as much as you can. I think you'll find it will only help you understand what's going on.

Good luck!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[csocain]

Great information about testing after starting the diet. That's what I will have to do. No matter what shows up I will follow the diet because I am very slowly starting to feel better after eliminating gluten from my diet. Can't go back to feeling so horrible!

I have interstitial cystitis as well as other conditions, then discovered the celiac. Following both the IC diet and the GF diet is a real challenge. Hope to find some great information here on the forum. I am pretty good about changing my diet (been there, done that with IC) but need more help in determining what other things have gluten in them, especially what other ingredients in products are not gluten free. Any help would be appreciate.

Blessings to all of you and enjoy your day!
_________________
Carolyn

Surviving And Thriving By God's Grace

[aklap]

[csocain]

Thanks, Al, for all the information and the websites to check out. Between my two diets it's going to be quite a trick to find a workable combination, but I know it can be done. I am very grateful for all that you have given me and will check them out, print them out, and use them VERY often. This is more complex that I ever realized but not impossible. What is it the song says "One day at a time, sweet Jesus". Well, that's just the way that I will have to work this, but probably more like one moment at a time.

Thanks again. Blessings to you and yours.
_________________
Carolyn

Surviving And Thriving By God's Grace

[aklap]

[csocain]

Interstitial cystitis is an inflammation of the lining of the bladder. It is a chronic illness and usually diagnosed through having a cystoscopy and hydrodistention under anesthesia. I was diagnosed in May 2004. Since that time I have been trying to figure out many things, diet being only one of them. It kept me homebound, bedridden, and extremely weak for the first 5-6 months. Pain is also a great part of it for many of us. Before I was diagnosed I was going to the bathroom 50-75 times a day (a 24 hr. period). Not much fun and you don't get much sleep.

With IC there are many medical possibilities for treatment, but the one thing about IC is that no IC patient is like the rest. Each of us responds differently to medications and bladder instillations differently. It is a maze of "try this, try that" to find out what works for you. However, most IC patients do find that the IC diet helps their symptoms. Like CD, changing to an IC diet does not bring immediate changes in our condition but, over time, it usually does. For me personally it is the only thing that has worked at all. All medications that I have tried have made me sicker rather than better. No room for improvement in that.

The IC diet is also a place where some IC patients find they can have more selections than other patients. Acidic foods are especially bad for us- ie, fruits, vinegar, alcoholic beverages, and the like. Food additives are bad for us too- MSG, BHA, BHT, nitrates, sulfites, etc. Depending on how a patient's body and bladder respond to the different foods determines if they can have it- just like CD. However, we end up in pain AND in the bathroom!!! The diet is pretty restricted and it is a real challenge to follow but worth the effort. Trying to put it together with the CD diet is a mess- at least for right now- to me. But the Lord will show me how to do just that. I will probably end up being able to eat more food than I have been able to eat on just the IC diet because of the easing of my stomach and abdominal pain. For so long I've been unable to eat without being nauseated before, during , and after. Not much fun to eat with all of that going on.

Many, if not most, IC patients have what we call "related conditions". That's where the IBS, lactose intolerance, GERD, Sjorens, etc. come in. I have a long list of them myself but am now wondering if some of them are actually caused by the CD. Will be looking into that soon.

A couple of websites that you may want to investigate about IC are these. They have loads of wonderful information and support for the men and women (and their families) who have IC and related conditions. Hope they will explain things further for you. IC is not well known and very often misdiagnosed. I certainly had never heard of it until shortly before I was diagnosed.

www.ic-network.com
(check out their patient handbook from the left hand column)

www.ichelp.com
(this is the int'l. IC organization that started here in the US)

Both websites are very helpful and I am so thankful for them and their continuing efforts to help IC patients. IC can be extremely isolating. Not something I had ever anticipated in my life.

Blessings to you and yours. Hope this has helped and will help you understand the conflict that I am dealing with as I try to mesh the two diets. Any and all help is greatly appreciated.
_________________
Carolyn

Surviving And Thriving By God's Grace

[aklap]

Hi Carolyn,

Thanks for the excellent info! I am sorry you have to go thru that.

I'm sure you have seen this, but I'll post it for others.

IC diet:
http://www.ichelp.com/TreatmentAndSelfHelp/ICAndDiet.html

More IC Friendly food:
IC Diet Food List

Food sensitivities are one of the worst culprits to the IC flare. There are many that feel that interstitial cystitis is a form of food allergy. Until the proper cause of IC is determined, there are ample studies that suggest that diet does trigger in IC flare. The more acidic the food is, the worse off you'll be for eating it. Along with the right foods, hydration is the key to easing a flare. A simple key to how much water you need a day is to half your weight and drink that much (in ounces) of water a day. For example: I weigh 120, therefore I need 60 ounces of water a day. Chocolate, Tobacco, Caffeine, and Tomatoes are the top No-No's to the IC diet.

Below is a listing of food that should be okay for most IC sufferers (NOTE - SOME ARE NOT GF):
Chamomile tea, mint tea
Bottled water
Pear Juice
Milk
Buckwheat
Corn bread
Couscous
Matzo
Oat, White, Potato Bread
Pasta
Pitas
Quinoa, rice
Butter, Margarine
Canola, Coconut, Corn, olive, peanut, safflower, sesame, soy oil
Beef, chicken, fish, lamb, beef or chicken liver, pork, shellfish
Shrimp, turkey, Veal
Eggs
Cream, cottage, feta, mozzarella, ricotta, string cheese
Whipped cream
Vanilla ice cream
Broccoli, Brussels sprouts, cabbage, carrots, cauliflower, chives
Collard greens, corn, cucumber, lentils
Kale, lettuce, mustard greens
Mushrooms
Dried Beans
Okra, parsley, peas, potatoes, pumpkin, radishes, snow and split peas
Summer and winter squash, turnips, zucchini, yams Dates, pears, coconut
Brown sugar, carob
Carrot cake, crème brulee, custards, divinity, homemade pound cake
Homemade white and yellow cake
Homemade vanilla and caramel frosting
Homey
Licorice
Maple syrup
Pear pastries
Sugar
Sugar cookies
Tapioca
Vanilla pudding, vanilla ice cream
Allspice, almond extract, anise, basil, caraway seed, coriander
Dill, fennel, garlic, mace, marjoram, oregano, poppy seed, rosemary
Sage, salt, thyme, tarragon, vanilla extract


I wish you well in your knowledge & health quest!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[csocain]

Al, thanks for looking up information about IC and posting it on the CD message board. Maybe someone will be helped by that. It's so unknown that most folks don't even know to ask about it. You've given some good info on the diet and I appreciate that.

I'm about to embark on re-trying some of the IC foods that did not work for my body a year ago but may work now since I've discovered that I have CD. I truly imagine my diet will get a whole lot better now than it has been. I'm sure ready for that!!!!! Never knew eating could be such a challenge. God is taking good care of me. I think that the CD was the problem with the reaction to the foods before, not the IC. Wouldn't that be great??? Will let you know how it goes.

Thanks again for investigating IC. I am grateful for your doing that. Blessings to you and yours and good GF eating to you!
_________________
Carolyn

Surviving And Thriving By God's Grace