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ALOERA2 SparkPoints: (3,099)
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3/26/12 10:49 A

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thank you, Faith....I didn't even know that this product existed...I will look in to it! Thanks for your time and your reply....and best of luck to you :)

ALOERA2 SparkPoints: (3,099)
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3/26/12 10:47 A

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thanks, Mark!

I appreciate your reply and it is nice to know that I am not alone (although I wouldn't wish it upon my worst enemy). I am going to take a big folder filled with information to my next doctor's appt next month and see what he has to say...he is very easy going, is flexible and has always recommended I do what I feel is best. I would like to get tested, just to confirm, but I can't bear the idea of eating gluten again in order to get accurate results....any thoughts on this?

MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (20,034)
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3/26/12 10:45 A

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AloeRA2 --

I'm here without any type of gluten dx (which I have never pursued). I have MS, however, and there is a school of thought which advocates GF diets for anyone with MS, and who believes that having MS (or other auto-immune diseases) is a sign of some type of gluten intolerance.

In my quest to lose weight (Sept 2010 - Sept 2011), I decreased carbs, which, by default, also decreased my gluten. My MS has been under better control since that time, and i decided to experiment, some, with decreasing gluten even more.

I am not willing to go 100% GF, but, I've decreased my gluten consumption, usually, to 3x per week. I also take a gluten digestive enzyme daily, and am particularly careful to take one if I am consuming a gluten meal. I have observed that, if I eat gluten without an enzyme, I tend to have more intestinal (loose bowel) symptoms, so I do suspect that I have some gluten sensitivities, although I don't need to avoid gluten altogether.

The brand that I use is: NOW Gluten Digest www.amazon.com/Foods-Gluten-Digest-E
nz
ymes-Vcaps/dp/B003O1TZHQ/ref=sr_1_1?R>s=hpc&ie=UTF8&qid=1332722614&sr=1-1
, but there are also other brands out there.

I'd suggest taking enzymes for you, too, and being particularly careful to take them when you eat somewhere where cross-contamination (or, being "glutened") is a possibility, in order to avoid spending future weekends in misery.

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
3/26/12 9:58 A

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Welcome to the team. You have gone through the same process of getting proper diagnoses as a lot of us have. Celiac Disease (CD) and Gluten Intolerance (GI) was considered very rare even when I was diagnosed in 1994. Many other illnesses are related or associated with CD and GI and I know that once I was actually diagnosed my doctor all responded with a "That explains why you have this". I have Fibro also and some people do find relief for it by being gluten free. I can not say wither mine is improved by the diet because I have been on it for so long. When I was first being tested for CD I had a very good doctor and her attitude was that if I felt better on the diet then that was good enough for her to diagnose me. We just followed through with the test just for conformation.


Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
 
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ALOERA2 SparkPoints: (3,099)
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3/26/12 6:41 A

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Hello everyone, I will try to make this as brief as possible but just want to introduce myself! I have recently gone gluten free in an attempt to relieve some of my fibromyalgia symptoms (I was dx'd a little over a year ago). I have not been tested for gluten sensitivity, and I'm not trying to self diagnose, I am just tired of being misdiagnosed for the past 20 years. In 1991 I was dx'd with Chron's disease, was very ill for a year and was told that I needed a colostomy bag. After seeking a 2nd opinion and going thru a 2nd round of testing including an additional colonoscopy it was determined that I did not have Chron's. Ten years later I was dx'd with bipolar disorder and was over medicated for probably 3 years. When I became pregnant with my 3rd child I went off of my meds and low and behold actually got better. Then a little over a year ago I was dx'd with Fibro after going thru all of the testing for MS where it was discovered on an MRI that I have lesions on my brain (none on my thoracic spine mri and lumbar puncture came back neg for MS) so they decided on Fibro. However....the more I read about gluten intolerance, the more I feel like the pieces of the puzzle are finally coming together. All of the things I've been dx'd with are commonly mis dx'd instead of gluten intolerance. I've also just read that gluten intolerance can cause calcification / lesions on the brain that cannot be distinguished from MS. Which leads me to wonder....why don't Dr's test for gluten sensitivity? I feel like 20 years of my life has been wasted running from one dr to the next, hoping someone could finally figure out what's going on with me. I haven't felt this good in....I can't remember when. I thought that the headaches, joint pain, balance issues, eczema and tummy troubles were NORMAL. You live with it for so long that it becomes your normal.

As I mentioned I'm not trying to self dx, but we went to a reception over the weekend where I was accidentally "glutened" and have spent the remainder of the weekend in misery. There is no doubt in my mind that I have a gluten sensitivity, and I don't care if I ever get a test to prove it, I will never eat gluten again as long as I can help it.....

Sorry this was so long, I didn't mean for it to be....I just feel like I've had one of those life changing "light bulb" moments and want to shout it from the mountain!! I am interested in hearing if anyone has had a similar experience? Thanks in advance!

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