Muscle Wasting

[curiousgirl]

For a year, I have been going back and forth to UCSF trying to diagnose why the muscles in my left hand are wasting away. Needless to day, using my thumb, index finger, middle finger is getting more and more difficult! My daily activities become more and more difficult to perform (zipping zippers, buttoning buttons, holding my blow dryer, and the list can go on and on).

After several MRI's, EMG's, a CT Myalogram (how do you spell that??), neurologists THOUGHT it was neuro-genetic thoracic outlet syndrome so I had surgery for this issue last December. When I told my neuro doc I had been recently diagnosed with celiac disease, he thought that may be the cause of my muscles in hand wasting away. Though my symptoms are getting worse, we decided to wait til October to do more testing (another MRI, and a lumbar puncture) because we thought the gluten-free diet would help.

My symptoms are getting worse rather than better even though I've been doing well on the diet (as best I can anyway). So, I've chosen to get the testing done rather than wait.

There have been people kind enough to reply and tell their stories of muscle weakness; but, don't seem to recognize that my muscles are actually wasting away...my left hand looks like a skeleton.

Does anyone have any information on this muscle wasting??

[ravenwoodglass]

Did you have an injury or surgery to the hand or that arm before this started? I had the wasting happen to a leg after I had surgery on my knee. When I went to have the stiches out the next week I had lost all muscle from where the tourniquet was down. My doctor said it was something like sympathetic dystrophy and I had to have months of PT with ultrasound before the leg was anywhere near normal. This was before I was diagnosed.

Also if you need to be gluten free you have to be super strict without slip ups if the nervous system is affected.

This comment concerns me- "My symptoms are getting worse rather than better even though I've been doing well on the diet (as best I can anyway)" and tells me you need to be more strict.

[Jestgar]

A friend of mine has a genetic disorder that caused those muscles in both her hands to waste away. She was expecting it because other family members have had the same problem. In her fifties she had reconstructive surgery to make her thumb usable again. Maybe something similar and not related to gluten at all?

[curiousgirl]

Did you have an injury or surgery to the hand or that arm before this started? I had the wasting happen to a leg after I had surgery on my knee. When I went to have the stiches out the next week I had lost all muscle from where the tourniquet was down. My doctor said it was something like sympathetic dystrophy and I had to have months of PT with ultrasound before the leg was anywhere near normal. This was before I was diagnosed.

Also if you need to be gluten free you have to be super strict without slip ups if the nervous system is affected.

This comment concerns me- "My symptoms are getting worse rather than better even though I've been doing well on the diet (as best I can anyway)" and tells me you need to be more strict.

Thanks for your response.

This began very slowly in my thumb, now more than a year ago..in January 2009. There was no injury or surgery prior (except for the December 2009 surgery to correct the problem). I thought it was from being a massage therapist for so many years, thought it was from using hot stones, thought it was from using hand-held medicine balls (just a couple of days) to exercise my wrists...in fact, after doing that, my wrists were in a lot of pain. Just thought I over did it, though.

The neuro docs have included my case in about 3 conferences now and are still baffled by this. MS, ALS was not absolutely ruled out, but docs doubt that it's anything like that...as far as I understand.

Yes, I'm following the diet as best I can. We have a gluten free specialty store here in Sacramento and I've been doing most of my shopping there. If I've had any gluten, it was by mistake...afterall, I'm just learning about Celiac disease. My diet mostly consists of fresh vegetables and fruit (not necessarily organic), gluten-free bread, butter, gluten-free peanut butter, fresh and frozen unseasoned chicken, fresh or frozen unseasoned salmon, lactaid milk, eggs, coffee from Trader Joe's and anything from the gluten-free specialty store. I don't typically eat sweets just because I've been diabetic for so long, I just don't plan for it in my diet. (It is interesting to me though, how so many recipes I see are for things like cookies, cakes, and other sweets.) I cook with coconut oil. I made sure my supplements are gluten-free and my rx's are gluten-free. I haven't recently eaten out or eaten anybody else's cooking but the 2 times I did, I didn't have any symptoms. But, ate gluten-free crackers from specialty store, and felt bad on Friday, horrible on Saturday, and just ok today.

So, based on that list, are there any suggestions you or anyone can make? Maybe I'm missing something?

Thanks!

[curiousgirl]

A friend of mine has a genetic disorder that caused those muscles in both her hands to waste away. She was expecting it because other family members have had the same problem. In her fifties she had reconstructive surgery to make her thumb usable again. Maybe something similar and not related to gluten at all?

Hi. Thanks for your response.

What is the name of the genetic disease? I don't recall any family members having anything such as this.

Did her muscle wasting begin slowly as mine did? And, how is the rest of her hands doing?

I really have felt better since on diet and know when I've been "glutened."

[curiousgirl]

Did you have an injury or surgery to the hand or that arm before this started? I had the wasting happen to a leg after I had surgery on my knee. When I went to have the stiches out the next week I had lost all muscle from where the tourniquet was down. My doctor said it was something like sympathetic dystrophy and I had to have months of PT with ultrasound before the leg was anywhere near normal. This was before I was diagnosed.

Also if you need to be gluten free you have to be super strict without slip ups if the nervous system is affected.

This comment concerns me- "My symptoms are getting worse rather than better even though I've been doing well on the diet (as best I can anyway)" and tells me you need to be more strict.

Hello, it's me again!

After giving it some thought, it has to be something that I'm doing every day. A couple of times a day with my coffee, I add a little lactaid milk, brown sugar (don't know ingredients...I take it out of the bag and put in a container), McCormick Ground Cinnamon, and a little Trader Joe's Vanilla Flavoring. The ingredients are: glycerine, water, sugar cane, vanilla bean extractives.

And I just now looked at their fresh ricotta that I have with fruit. I don't have it often because it spoils before I can finish it all. But the ingredients are pasturized whole milk, whey, vinegar, and salt. Okay, the vinegar could be suspicious and I haven't heard anything about whey. But, I guess it's safe to assume that even a little bit and not very often (unlike my DAILY "fancy" coffee) could be a problem...even though I don't recall feeling sick after eating it.

And while I'm on the subject of Trader Joe's, they have given me a very long list of their products that are gluten free. I haven't really been eating their food because I really don't believe life can be that easy...having all that tasty food and still have celiac (if you know what I mean). I use their fresh veggies and fruit, their Italian roast coffee, dog biscuits, packaged almonds, and not much else.

Thanks!

[ravenwoodglass]

Hello, it's me again!

After giving it some thought, it has to be something that I'm doing every day. A couple of times a day with my coffee, I add a little lactaid milk, brown sugar (don't know ingredients...I take it out of the bag and put in a container), McCormick Ground Cinnamon, and a little Trader Joe's Vanilla Flavoring. The ingredients are: glycerine, water, sugar cane, vanilla bean extractives.

And I just now looked at their fresh ricotta that I have with fruit. I don't have it often because it spoils before I can finish it all. But the ingredients are pasturized whole milk, whey, vinegar, and salt. Okay, the vinegar could be suspicious and I haven't heard anything about whey. But, I guess it's safe to assume that even a little bit and not very often (unlike my DAILY "fancy" coffee) could be a problem...even though I don't recall feeling sick after eating it.

And while I'm on the subject of Trader Joe's, they have given me a very long list of their products that are gluten free. I haven't really been eating their food because I really don't believe life can be that easy...having all that tasty food and still have celiac (if you know what I mean). I use their fresh veggies and fruit, their Italian roast coffee, dog biscuits, packaged almonds, and not much else.

Thanks!

If your still having glutening symptoms in addition to the hand problems you may want to try eliminating those things that you think are suspect for a week or two and see if the symptoms resolve. It sounds like your being careful with the diet but sometimes things can be CC'd if they are processed. There was an article recently that someone posted a link to about how badly some of our flours can be CC'd.

I do hope they are able to figure out what is going on with your hand. It must be really scarey. As Jestgar said it may be something that has nothing to do with gluten. Have they sent you to a PT to see if maybe they can help a bit?

[curiousgirl]

If your still having glutening symptoms in addition to the hand problems you may want to try eliminating those things that you think are suspect for a week or two and see if the symptoms resolve. It sounds like your being careful with the diet but sometimes things can be CC'd if they are processed. There was an article recently that someone posted a link to about how badly some of our flours can be CC'd.

I do hope they are able to figure out what is going on with your hand. It must be really scarey. As Jestgar said it may be something that has nothing to do with gluten. Have they sent you to a PT to see if maybe they can help a bit?

No PT yet, but I was just thinking of that the other day. Will make a note to get a referral from PCP tomorrow. Thanks!