mark6556

When you talk about muscle weakness, are your muscles atrophied?

No, I don't think my muscles have atrophied. I have strength and can lift heavy things. I am easily tired and my arms and legs feel heavy at times due to activity. My muscles look normal, they are not shrunk or anything like that.

I've been dealing with celiac disease for almost a year now. In trying to resolve issues with muscle weakness I've been experimenting with diet & fasting. The one thing I have definitely learned... diet has everything to do with how much weight you carry. If you want to drop weight, alter your diet more toward vegetarianism and eliminate empty carbs such as white rice and also eliminate processed foods. Your guaranteed to drop weight. Start simple. Change one meal at a time. Bottom line, if your eating more fresh fruits & vegetables overall, your eating healthier and your weight will drop. Hope this helps.

Roxnhead, thanks for your reply. You problem seems to align pretty well with mine. Can you tell me more about your new diet? The most obvious carbs are from pasta, grains, and bread. But white potatoes, dried fruits, and other vegetables can contain high carb contents. How strict did you go? Also, did your muscle weakness start after going gluten free or was it present prior to that?

I recently fasted 1 week on water only and altered my diet to a more vegetarian/raw type diet following that. The fast didn't address the muscle weakness/fatigue whatsoever. My diet change has put my CBC blood profile completely in-line but the muscle weakness and fatigue is still unchanged. I debate whether a longer fast may help as I fasted until my fat reserves were depleted(I'm thin so it didn't take long at all). Longer fasting would cause more muscle tissue to be torn down and rebuilt during recovery. Whether this will help is unknown but I'm targeting another attempt this fall/winter.

I have seen a neurologist(actually two of them now), both suggested myasthenia gravis also. But the blood test came back negative. I tend to think this is just the latest new medical diagnosis that all the doctors are trying to apply in real life but like many conditions... its just a general box of symptoms thats not all that well understood.

Georgie, rest always improves the fatigue/muscle weakness. I also had the EMG test and the one where they stick an electrode in the muscle... Everything was found to be normal. The weakness is most noticeable in my arms but I believe it affects most muscle groups. I think you notice it more in the muscles you use the most. No issues with chewing, eye lid muscles or any of that. Stair climbings effects are definitely noticeable, especially if I have been active, if I rest, its less of an issue.

Also I am adjusting my diet to include mostly alkaline forming foods. This is theorized to help build up various minerals in the body like magnesium, calcium and others without resorting to supplements. From what I've seen, if you go to a vegetarian type diet, you are for the most part doing this. Haven't done it long enough to know if it makes a difference. I've tried vitamins before and didn't find it did much of anything.

Before I got a diagnosis, (from the antibodies), I had been having elevated c-reactive protein lab results. (Should be 0-o.5), mine had been 4-6. All of a sudden it went way up to 9.2, and I was feeling lousy. My GP suspected Celiacs when he saw that result, of course the antibodies confirmed. I have been gluten free since oct. 7th, and I am hoping the CRP level will drop when they re-test at 6 months.

Anyone else have an elevated CRP? How long did it take to reduce? Did it ever become normal?

Thanks!

My CRP has always been low and continues to be. blood test and biopsy confirmed my celiac. I'm not sure there is a connection between CRP and celiac. I would think that might be an indication of another auto-immune problem in addition to your celiac condition.

I think any elevation in anitbodies warrants a dietary test. I was I think (2 years ago) a 5 and a positive was an 8 on the blood test. I was only gluten free for a month. had a positive biopsy almost 2 years later. Some people just don't make enough IgA. I did do the Enterolab test too just for curiosity on IgA levels and also for the gene test. I scored a 14 on both the IgA and ttg. On the low side too. Another forum I am joined to 2 people with positive biopsy's scored low positive too on Dr. Fine's test (we were already gluten free though). I think the enterolab site even states that if you scored below a 10 and have symptoms to go ahead and try the diet for at least 6 months to see if it works. My local celiac chapter often refers people to Dr. Fine for negative tests but still symptoms or for very little children. Hope you get your results soon but it pretty much takes almost 3 weeks now.

In my experience I found the fecal malabsorbtion test consistent with other test results. Blood work & a biopsy confirmed I have celiac. In addition, I had a pill camera endoscopy. That showed very serious blunted villi throughout the first half of my small intestine. The fecal malabsorbtion test also showed very high malabsorbtion. So in my experience I found the fecal malabsorbtion test very accurate. You should describe your symptoms because it might make it easier for others to pinpoint your problem or suggest other things to look it. Also note that Enterlab's website has some technical slides that indicate on average people that test positive for celiac score around 45 or more I think. But there are always outliers I'm sure. They have to establish a limit at some value... I'm sure there are exceptions to the rule but probably for most cases the value of 10 or more catches almost all cases of it. You might want to look at other things as well such as food allergies or a food elimination diet...