Am I or Am I Not??

[Lisa]

It was first suggested to me probably 8-9 months ago now by a chiropractor that I was allergic to gluten, based on symptoms I was describing- fatigue, achiness, arthritis symptoms and the fact that I have been diagnosed with fibromyalgia by a rheumatologist. The chiropractor requested I go six weeks gluten free and then set up a time to come see him. I agreed without having any idea what that meant- the first list I pulled up scared the snot out of me- it was basically my entire diet. As I have learned more, I have eliminated more but even tonight in browsing this forum I see several more items that I had no clue- brown sugar for instance! The chiropractor insists,along with the massage therapist in the office, that they can see and feel a definite difference in my muscle tone and how I adjust. I was able to get rid of the medication I took at night to sleep and back off on another medication. Other than that, I feel lousy. I am so fatigued all the time, weary and worn out. I have bursitis and the pain is chronic in my shoulder and hips and I have tons of low back pain and lots of headaches. I sleep decent once I get to sleep but I am wide awake most nights til midnight, 1 or 2 am. But I can barely drag myself out of bed in the morning no matter what time I get up- 8, 9, 10.... I havent seen any of you mention MSG but that definitely kills me- immediate stomach cramps and diarrhea. I cheated the other night and had a cookie and got some abdominal cramping and diarrhea in the morning but that was it. Then I begin to wonder- did I bring this on- is it becuz I have deprived myself of these foods for so long now that my system just cant handle them?
My primary care just raised her eyebrows when I told her about this in the beginning and she isnt overly familiar with it. I have been gf for so long now (or at least to the best of my knowledge) that a blood test wouldnt be accurate and probably not an intestinal biopsy either- I dont need an "official" diagnosis I just want to be sure I am not wasting my time on a diet that isnt necessary. Guess I still want to escape it. What type of specialist should I be asking to see for help with this?

I would welcome any input.

[aklap]

Hi Lisa,

Well, it's 1:07 AM Central Time...I'm still up, but I need to get to bed.

A very short & simple answer - if you feel better off of gluten - you have your answer.

It gets more complicated than that when it comes to testing. You need to be consuming 35g (a bagel) a day for 6 wks before blood tests.

Once you go off gluten your body does become more sensitive to it...so a small amount can cause a big reaction.

How long have you been GF? (8 or 9 months?) How strict have you been? Could you be consuming hidden gluten?

I need to close now...but I'll check back.
_________________
Al

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

[Lisa]

I would say 9 months but probably more strict for 7 months. It took me awhile to keep learning more things and then I would eliminate them. Like in the first month I just eliminated the obvious-breads, pastas... but I didnt even think of things like cream soups and boullion, so as I learned I got rid of those. Now I see MSG on some lists but not on others but I know that I was accidentally served Chinese food for MSG a few weeks ago and I had an immediate response to it- stomach cramping and diarrhea for 2 days. Is Chinese food relatively safe? if I stick away from the soy sauce and MSG? That seemed like a safer restaurant to eat at for the rare occassions when I do eat out.

I was concerned that maybe I created my problem and now becuz of eliminating all this stuff from my diet that I have made myself sensitive to it but I guess that is just an idle hope that I didnt have to do this. I have found the cost very restrictive- I would just cook gluten free for my family, but it is way too pricey. I have to buy most of my stuff off the internet as I am in an area where there are only small health food stores and they dont carry much and what they do is overpriced but I also find the internet frustrating with not being able to hold the product and see it and having to pay shipping but I guess I have to get used to it.

I cant say that I really feel better but I am that type of person that has to stop a medication before I noticed I felt better while taking it! And I have gotten rid of a couple meds in the last 9 months and I do sleep better. I also have a multitude of other ailments - fibromyalgia, tendonitis, bursitis, migraine syndrome, chronic fatigue- so it is hard to distinguish at times.

any thoughts?

[aklap]

Hi Lisa,

Im home for lunch, I'll try to answer some more questions.

I also have a multitude of other ailments - fibromyalgia, tendonitis, bursitis, migraine syndrome, chronic fatigue- so it is hard to distinguish at times.
All of these have links to gluten sensitivity. A customer of mine has a friend - huge problems with Fibro. After I suggested to my customer she try a GF diet - ALL Fibro symptoms have vanish!! She asked my customer to pass on a thanks to me when she saw me next. That's such a cool feeling - to help someone.

It took me awhile to keep learning more things and then I would eliminate them. Like in the first month I just eliminated the obvious-breads, pastas... but I didnt even think of things like cream soups and boullion, so as I learned I got rid of those.
I started with the biggies 1st too. I - like you - didn't want to have to be GF. So I experimented going on & off gluten to see how I'd feel. I thought it was all in my head. But after time and a few ingestions of gluten - I knew that it wasn't in my head.

Finding the hidden gluten can be a problem at first. That's why I posted the Safe & forbidden food ingredient list from celiac.com. Once you know those items - you can look at labels and figure it out. "Give a person a fish they'll eat for a day...Teach them to fish, they'll eat for a lifetime". Those lists went to the store every time (until you know what's what).

Now I see MSG on some lists but not on others but I know that I was accidentally served Chinese food for MSG a few weeks ago and I had an immediate response to it- stomach cramping and diarrhea for 2 days. Is Chinese food relatively safe? if I stick away from the soy sauce and MSG?
People react to MSG just on it's own. I believe MSG is GF. MSG can cause seizures in some. Best to stay away from it. Chinese restaurants are not really very GF friendly. It's because of the soy sauce - most has wheat. LaChoy is GF. It could be the MSG - but maybe it was the soy sauce or cross contaminiation.


I have found the cost very restrictive- I would just cook gluten free for my family, but it is way too pricey.
It really doesn't have to be costly. If you get specialty foods (bread, pastas, baked goods) - yes it is. But many foods are naturally GF. Fresh fruits & veggies, unmarinated meats, fish & poultry. Those are known as whole foods (not or minimally processed). Sometimes starting out it's easier to go this way. Then you don't have to be concerned about whats OK and what's not. There is also the Chicago Area Mainsteam food list. That has TONS of stuff that is GF (always check labels just to make sure - products change!!)

You will find that baking items yourself will be cheaper & taste A LOT better than the packaged stuff. Thank God my wife loves to bake!!! After awhile you get over the cravings for bread & the like. I WAS A HUGE bread eater before. Now if I have a loaf every month or two, I'm lucky.

Do you have any health food stores near you?? Yes specialty food is more, but there's no shipping.

Lisa, I've run out of time for now...I'll be back
_________________
Al

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

[Guest]

You mentioned some lists I could print and take to the store with me for awhile- where were they found? I did read all the vinegar info and that helped.

You said your wife bakes- I like to bake but could use some help. I got Bette Hagmans book Gluten Free Gourmet .... but it seems you need a million things to do one recipe and it is always something I dont have. The health food stores I have access to dont ahve alot of the ingredients and then when they do, they are in very small quantities and not the right proportion-so by the time I buy all the ingredientsa nd then have some of this and some of that left- I may as well have bought a mix. I have used the Pamelas and like it really well for pancakes and her brownie mix but theya re very pricey. I have mixed up some of Hagmans GF pancake mix and made those pancakes but I would prefer a little thicker, heavier pancake- these are so crepe like. And bread? can I just do something in a regular bread machine? everything I am reading says I need a heavy duty mixer, which I dont have at this point.

I am scheduled to see a gastrontologist in Jan to be evaluated- my primary care thought she wanted to be on the safe side. What should I be asking?

Thanks for all your help.

[aklap]

[Gf who me?]

Hi,

I have experienced exactly what you have described, except I had the biopsy after GF for only 3 weeks. As you know I probably wasn't 100% GF because I wasn't that knowledgeable and it is hidden in everything.
I received a negative diagnosis and had my results sent to the world's leading expert to review and got negative again.
I too have chronic fatigue. After going from Dr. to Dr. what helped me was reading a variety of books. One cookbook Cooking without by Barabara Cousins discussed Leaky Gut Syndrome and Candida Overgrowth.
I learned at a Celiac seminar put on by Dana ? author of -Wheat Free Worry Free, that all symptoms should clear up on a GF diet. Of course, many Celiacs are also Dairy Intolerant (some clear up when intestines heal.) When I went on both GF and Dairy Free and still had sporadic reoccurences of symtoms I knew it was something else. Elimination diets are really the only way to find out what exactly is the culprit. There are books on how to properly do them. William Crook, MD has many Yeast Books with this info.
I have been diagnosed with Candida and am still on GF.DF diet. When I knocked out white flours (even rice, now use brown rice only) sugar, vinegar, and yeast my reoccurences have gone away. On niastatin prescript for the yeast and B12 shots for energy(highly recommend B12.)

Hope this helps. If you don't have Celiac, just Candida Overgrowth, you may be able to go back to normal eating again. Then you could test then.

[lynda]

i didnt know we have to eliminate sugar???
completely???

_________________
LYNDA