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Sharon Marie

Leg Weakness

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I have such weakness from my knees down. They often feel like they are drained after useing stairs or excersizeing. Is this a symptom of celiac disease??

I am just newly diagnosed. I am so anxious to learn all I can.

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I have such weakness from my knees down. They often feel like they are drained after useing stairs or excersizeing. Is this a symptom of celiac disease??

I am just newly diagnosed. I am so anxious to learn all I can.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Pretty much anything and everything is a symptom of celiac disease.

Just kidding, but almost anything and everything are symptoms from complications of celiac disease. When your intestines are so damaged they don't always absorb the amount that they should. You also may have eliminated something that was providing you with the right vitamins and minerals and now you are lacking them.

It could be a vitamin deficiency causing the weakness.

I would recommend a blood workup with your doctor to check all of your levels and see if you should be supplementing. It could just be that your body is trying to get used to this new lifestyle.

Good luck.


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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This was a big problem for me while I was being diagnosed over a period of 6 months. My legs got so bad at times that I couldnt get out of bed and when I could I needed a cane for walking. At one point they thought it was Parkinsons since at times my legs would shake badly. Finally when I was diagnosed and went totally and I emphasize totally, gluten free,

the pain and all the problems went away. Took a month or two before I got my strength back in my legs.

Good luck!

Ken

:o

I have such weakness from my knees down. They often feel like they are drained after useing stairs or excersizeing. Is this a symptom of celiac disease??

I am just newly diagnosed. I am so anxious to learn all I can.


"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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:o

I have such weakness from my knees down. They often feel like they are drained after useing stairs or excersizeing. Is this a symptom of celiac disease??

I am just newly diagnosed. I am so anxious to learn all I can.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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In addition to the advice already given I would suggest adding a sublingual for sure gluten free B12 vitamin to your supplements. It will help nerve function and energy levels and will help speed your healing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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:o

Thanks so much for the quick responses. It helps to know there are friends here I can compare notes with as I live and learn....

Is it true I should be cooking in separate pans. That washing is not enough to cleanse them of gluton ????

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Thanks so much for the quick responses. It helps to know there are friends here I can compare notes with as I live and learn....

Is it true I should be cooking in separate pans. That washing is not enough to cleanse them of gluton ????

If those pans are older and have scratches yes. You also need a different toaster and cutting boards, wooden spoons etc. As far as dishes and glasses and silver ware if you wash them really well that should be enough. I would not put nongluten items into a dishwasher that cleans gluten dishes though. If you can minimize or even eliminate gluten foods from your house that is the ideal but many do manage to combine both diets in one kitchen. Also make sure you check your shampoos, lotions, cosmetics etc.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi,

I have been having trouble replying. Hope this works.

I think having leg weakness and pain is common to celiac. It comes in my opinion from an inabilty to produce and absorb b vitamins as well as vitamin d from the compromised villi. I think of this problem of aching legs and feet as being genetically and coeliac induced Beri Beri. I have had all the symptoms--even sometimes seeing and hearing folks who aren't there as well as having had heart palpitations from a compromised nervous system. Apparently according to a lipid blood test two years ago my myelin sheath covering on the nerves was down to 50%. And no I don't touch alcohol!

I now take co-enzyme b vitamins from country life (as well as the cod liver oil) in addition to my overall remedies of many years (and eat butter and coconut oil). It appears that as I aged I needed the co-enzyme form of b vitamins since the regular b vitamin supplements were doing me no good. With my yeast sensitivities things like brewers yeast were out (as a good source of b vitamins) and any fermented anything except now non fat organic plain yogurt (which I now can regularly eat since I started taking the country life co-enzyme b vitamins--but could not before!).

Taking vitamin D of course is also important for better calcium and mineral absorption. Taking cod liver oil for the vitamin D is best for me due to my swedish and scottish forbears and better too for the vit. A since I have an inherited inablity to handle eating carrots and most packaged beta carotene A.

The co enzyme b-vitamins have changed my life considerably for the better. I no longer have aching legs and feet and can actually fall asleep at night without taking a muscle relaxant etc. I also no longer wake up with a palpitating heart at 3 AM or rattle around if I walk up hill etc. I also can now detox more easily and exercise without creating headaches and dizziness. Amazingly a hot bath, jacuzzi or sauna are now good for me rather than life threatening. All these heart problems I had despite low cholesterol and low blood pressure and relatively ideal diet. Ditto with the occsional seeing and hearing things that weren't there.

I take the co-enzyme b vitamins first thing in the morning and late at night--i.e., away from food. Often I take it with nattokinase (a fibronylitic agent which heals the scar tissue of the intestines as well as elsewhere like in my neck which wasn't healing from a whiplash and elbows etc.--expensive but better than seeing a chiropractor etc.), bromelain/papain (also a --cheaper--fribronyltic anti-scar agent) and L-glutamine which stimulates the hormones naturally as an anti-aging agent as well as heals the gut and helps with the muscles and I think the ligaments.

Before I learned of this I used marshmallow root, dandelion root with alternating yellow dock or oregon grape root with licorice root (licorice root not recommended if you have high blood pressure), and pao de arco (to keep down fungus) regularly to keep myself alive with uva ursi thrown in occasionally or schizandra due to my tricky kidneys. Years ago I was rapidly losing my kidneys but found a diet avoiding gluten and citrus and using the herbs kept what was left of my kidneys healthy. I discovered my "brew" helps me have less joint pain plus that of my friends who also have arthritic issues. I still use this brew to good effect whenever I am feeling a little frazzled, achey or get kind of mucousy.

However all remedies and diet and brew aside I was very definitely going down hill without the intervention of the co-enzyme b vitamins.

I now can swim without killing my joints and have healed at last from the whiplash as long as I keep up my regime. Of course yoga and walking are also crucial. I am even making sculpture again. Previously I couldn't even write ten minutes without getting an excruciating headache the next day not to speak of swim. Part of this was not healing after a whiplash at the end of 2000. I simply couldn't figure out what was going on! Previous to that I had just recovered from having a frozen shoulder with the aid of the now banned Pap Imi machine that a local chiropractor fortunatley had. He also was able to cure Lymes with it and some other fandangled energy machine contraption. At the time I didnt know what lYLmes was but had gotten sick after a tick bite and had recurring feavers which would mysteriously disappear and was rapidly deteriorating til I figured out I had celiac (from perusing the Merk manual--no thanks to the docs).

I also now withthe co-enzyme b vitamins am no longer getting constant flues and colds etc. This was the bane of my existance since I was 4 months old! I now am starting at almost 60 to have a real life.

Slowly I have crawled out of the soup with little help from the medical establishment despiote my mtoher and brother with downs having both been determined by Kaiser to have celiac (of course no mention was made to me...even when I was at Kaiser!!). Even the alterantive folks have only been marginally helpful--though I will say the Pap Imi machine was a godsend.

Studying herbs and diet while using observaton and trial and error have helped the most. It has also helped that now there is now more awareness of this condition as with this and other celiac sites -- including clues about the B and D vitamins.

Thankfully the celiac has made it so at least I never have to worry about having stiff joints so I look and feel relatively young for my age. Eating all those veggies and exercise and not eating sugar has also helped! Though for me I don't do at all well as a vegetarian. Too many allergies to too many nuts and grains. Plus I have to limit beans though I can eat them twice a week.

Hope this helps!


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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sharon, I have had thie feeling too and an a newly diagnosed celiac. I just feel sometimes like my feet, well basically like you say from the knees down are not going to hold me up. Especially true near the end of the day or if I have been out shopping/running errands. I have not made it back in the gym yet. I just know that I'm not strong enough for that. I guess our newly diagnosed bodies are malnourished. I know that with my weight loss, my dr says that I have lost muscle mass. Don't know if that's true for you!? I am also having cramps in my hands, feet and calves from lack of potassium (despite the fact that I eat 1-2 bananas daily and am taking potas. tablets along with my multivit.) Just wanted to let you know that you are not alone in your symptoms!! :) Teri

:o

I have such weakness from my knees down. They often feel like they are drained after useing stairs or excersizeing. Is this a symptom of celiac disease??

I am just newly diagnosed. I am so anxious to learn all I can.


Teri

gottaBGfree

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Thanks so much for the quick responses. It helps to know there are friends here I can compare notes with as I live and learn....

Is it true I should be cooking in separate pans. That washing is not enough to cleanse them of gluten ????

:(

My poor husband is not on a gluten free diet so I can't keep a gluten free home. Guess we need to invest in a dishwasher...

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My husband isn't gluten free either and we haven't got a dishwasher. You can clean stuff just as well by hand.

That said. I do have my own skillet because he likes to eat breaded stuff like chicken nuggets and it's just easier this way. And we have separate wooden spoons for the gluten pan and my gluten-free one. Cutlery and plates & cups are easy to clean well enough to use for both. Basically you have to decide item by item whether or not they are easy enough to clean, and use separate stuff when necessary.

Pauliina

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sharon, I have had thie feeling too and an a newly diagnosed celiac. I just feel sometimes like my feet, well basically like you say from the knees down are not going to hold me up. Especially true near the end of the day or if I have been out shopping/running errands. I have not made it back in the gym yet. I just know that I'm not strong enough for that. I guess our newly diagnosed bodies are malnourished. I know that with my weight loss, my dr says that I have lost muscle mass. Don't know if that's true for you!? I am also having cramps in my hands, feet and calves from lack of potassium (despite the fact that I eat 1-2 bananas daily and am taking potas. tablets along with my multivit.) Just wanted to let you know that you are not alone in your symptoms!! :) Teri

ohhhhh Teri :( I just now found your post! I eat a banana a day plus I love potatoes! I have gotten such severe cramps that I even worried about blood clots. The calves of my legs have always looked underdeveloped. My feet cramp too.

Please do keep in touch and share with me. I need a friend that shares this common ..... thing!

Disease... intolerance.....

Thanks so much!

Sharon Marie

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Pretty much anything and everything is a symptom of celiac disease.

Just kidding, but almost anything and everything are symptoms from complications of celiac disease. When your intestines are so damaged they don't always absorb the amount that they should. You also may have eliminated something that was providing you with the right vitamins and minerals and now you are lacking them.

It could be a vitamin deficiency causing the weakness.

I would recommend a blood workup with your doctor to check all of your levels and see if you should be supplementing. It could just be that your body is trying to get used to this new lifestyle.

Good luck.

The Doc said I am severely anemic. Thats about all. I have taken supliments for years. So I was shocked to hear it. I feel like I get more info here then I ever did from the Doctor.

Thanks

Sharon Marie

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