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My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?


28 yr old Male

Diagnosed Celiac in February 2007

Gluten-free/Casein Free

HLA DQ 2,3 Subtype (2,8) I have both celiac genes!

Married

1 child 9 months- Levi

Yeast/Bacteria overgrowth

" CHANGE THE WAY YOU LOOK AT THINGS AND THE THINGS YOU LOOK AT CHANGE"

Wayne Dyer

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I had the exact same thing, only it got totally debilitating before I figured out what it was. Cutting right to the heart of the matter, I'll suggest two things; A magnesium supplement, and a sublingual methylcobalamin (B12) supplement. Do be sure the ones you select are gluten-free of course. The B12 I selected is by Source Naturals, 1mg, UPC#021078012931. It disolves under the tongue. I take three each day, as far apart as I can. This is to maximize absorption, as research indicates that the body can't absorb more than about 5mg per day, but around 3 seems to be the most efficient. The magnesium I chose is a powder, though if your digestion is up to it, you may be able to take capsules.

Anyway, I got tremendous benefits from these two things, and cannot say enough about how well they worked. I only wish I had figured it out right away, but it was this board and the fabulous members that helped me pin it down. The thing I cannot be sure of is how much I needed the B12, but I do know for certain that the magnesium has been truly indispensable.

I hope you get the relief you need!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Having just started a low carb diet and based on your sig you sound like you just went gluten free I'd say that could be part of your problem.

Cutting gluten is cutting out a lot of carbs and it takes a while for your body to adjust. Until we re-introduce carbs back into our diet in about another week we're taking 8 supplements a day. Ours is a bit more broad than the poster above the suggestion is a good one.

You sound like your going through carb withdrawl, I had the same things for the first few days.

We're taking 500mg Vitamin C once per day

Wal-Mart equivelent to Centrum twice a day

Wal-Mart equivelent to Calcium 600mg twice a day

That got rid of a lot of my leg cramping and fatique.

Since your not trying purposely to eat low carb try something like corn which is a high startch food and brocolli which is a complex carb food.

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My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?

Hi holdthegluten,

Just read your post, I actually just joined today.

Sorry to hear that you are having this problem. This sounds as if it could be thyroid related, you did just have a baby last nov?

I have graves disease and was treated, on the daily replacement now and when I am getting too much of the meds I will have leg weakness and in the thigh area in particular. Also you mentioned the cold/hot sensations, our thyroids keep our thermostats in check. Just a suggestion to see how your levels are, and when the doctors are doing the blood work they most often will only do values for the standard TSH, since you have had a baby recently doing the free t3 and free t4 and antibodies are important. Hope that this thought helps you and that you start to feel better with some answers.

Take care,

Susie

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My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?

Hi holdthegluten,

So sorry about not reading the complete post with you being 27 and the daddy!!! Yikes really sorry. Not to say that the guys don't have problems with the thyroid, but when we women start to have the childern we do tend to trigger the immune system and the endocrine connection.

Again please except my apologies, and congratulations on your new baby. Another thought (if you want it), low potassium can give you some of the symptoms you are having.

Take care,

Susie

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Almost two years I had the same problem while being diagnosed. I couldnt walk without a cane and for a week, couldnt walk at all. When I was finally diagnosed, I went totally gluten-free and had some hormone replacement therapy ( I'm male 56 and we can loose them too) -- In two weeks I was back to climbing around mountains in Hawaii. I also take many of the vitamins others mentioned

but I would check your testosterone and other hormones and amino acid levels.

Ken

My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?

"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Hi Holdthegluten,

I too had very weak legs and I did get worse for over a year where I was walking like someone with Parkinsons.

My tTG's and EMA's also increased. I was on a totally natural diet except for some rice pasta and Nut Thin crackers. My house was totally gluten free also. I wrote to the company that manufactures the Nut Thins and they wrote back that there can be up to 200ppm's of wheat in their product. This was a year or so ago so they may have lowered the amount of ppm's but I stopped eating anything that has any wheat in it even though they say it is safe for some it may not be for you.

The other change I made was adding 8,000IU of Vitamin D3 because my doctor found my levels were low. I am thinking it really was the vitamin D3 that got my legs moving again though.

I had been taking mega doses of Methylcobalamin B12 for a year before I was diagnosed which seemed to help some of the buzzing, tingling and neuropathy stuff but was very confused why my gait was getting slower and slower. It took me 1 year and 8 months before my celiac numbers dropped slightly below high.

My suggestion to you is to go to your doctor and discuss your weakness and request a complete vitamin and mineral workup that includes Vitamin D3, B12, Homocysteine, MMA, Folic Acid, copper, zinc, chromium, selenium, Vitamin B1, B6, E, Magnesium and Maganese.

I would also ask for another celiac panel to see what your counts are. If the Gliadin IgA and IgG's are going down that means your are probably not getting extra gluten which is good.

I would also suggest getting a TSH and Free T4 and Free T3 test done to make sure you are not going hyper or hypothyroid. My daughter came down with Graves about 1 year after her Celiac diagnosis. She was exhausted and was very weak and could hardly walk around the block.

Finally you might want to check for anemia and get the full panel with the Ferritin, Saturation, Total Iron and TIBC. Sometimes your RBC count is fine but you might not be storing the iron and it will make you very tired and weak.

I know this sounds like a lot but my whole family has Celiac now and everyone had something that was unusually low.

Doctors think once you go on the diet you get better in a few weaks, but I think many are finding out it takes a long time for some to get healthy again.

Good luck and if you don't want to do all of the blood tests, I would highly recommend you at least get your vitamin D3 checked. I would google this vitamin and study it because I am sure this one helped me turn the corner with my Celiac disease. I would also want you to know that most labs are still saying the low range is 20. That is deathly low and you want your numbers on the high end. Some say 50-60. On my lab report it was 20 but included a statement that 35 was the new low.


C.D.

Mom-Gold Star Celiac dx June 2005 with many neurological complications DQ2/DQ1, 0603, dx with DH Oct 2005

Dad-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2/DQ1, 0609

Son-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2

Daughter1-Celiac Disease positive tTG IgA DQ2

Daughter2-Celiac Disease-Mild Gluten Challenge caused severe anemia and major drop in Ferritin, Iron, and saturation levels with a major increase in TIBC, DQ2/DQ1, 0609 Dx Graves Disease

I also believe doctors need to make sure all vitamin levels are at the mid to high range in sick patients not just Celiacs. Mega doses of Vitamin D3 has helped my neurological problems.

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