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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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dani nero

Why Am I Losing Strength?

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Yesterday was the first day of 2012 which I cycled as the snow has melted away :-) It went great, the whether was nice and I really enjoyed it because paddling was not a challenge. I know however that if I keep on cycling.. let's say one-hour rides once every two days, I will be getting weaker and weaker until I'm not able to push on the paddles anymore (by the middle of week 2), and cycling even on straight roads will become a struggle, as if the bicycle is refusing to move forward. I would then stop cycling all together for more than a week or two. After that I notice that my bicycle can be pushed forward with ease again.

From what I know, the more one exercises the stronger they get. So obviously I'm either lacking supplements or not stretching enough. Anyone else have this problem, and how did you solve it?

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Have you had this checked out by a doctor? Yes, your muscles SHOULD get stronger. Muscles that become weak from exercise can indicate a number of illnesses that are NOT related to celiac. Many people with celiac develop other auto-immune diseases....so if you haven't had this particular problem evaluated, I would highly recommend that you do so. This could be a serious matter.

Alternatively, you may have either pernicious anemia or iron anemia, which would exhaust your muscles because they're not getting enough oxygen. Have you been tested for low Vitamin B-12 and iron? If not, this would be a good place to start.

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Being hypothyroid does that to me. I don't recover from exercise properly.

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Thanks both of you for the input. I haven't been checked yet, still waiting for appointment, but I did have thyroid checked two years ago I think, and it was fine. I would say it might be b12 / iron since I'm getting these sores at the corners of mouth.

I got myself some all-round supplements a few days ago. It was all the pharmacist could provide until I see the doc.

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It's quite possible that you're unable to absorb supplements right now, so you may find that the supplement the pharmacist gave you won't help at all. For some of us, we need to get our iron intravenously and either B-12 injections or sublingual tablets. The sublingual tablets are really inexpensive, so you might just try picking some up. If it's a B-12 problem, you'll see almost immediate improvement.

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It's quite possible that you're unable to absorb supplements right now, so you may find that the supplement the pharmacist gave you won't help at all. For some of us, we need to get our iron intravenously and either B-12 injections or sublingual tablets. The sublingual tablets are really inexpensive, so you might just try picking some up. If it's a B-12 problem, you'll see almost immediate improvement.

Thanks for your advice Rosetapper xoxo :-)

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You're welcome! But, please, see a doctor if you can--the muscle weakness you describe is very worrisome.

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Hey, you're not on a cholesterol-lowering drug are you?

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I will see a doctor. It can take a while as the health-care here is as fast as a turtle unless someone is dying.

Nope, I don't take any drugs. The only thing I used to take was birth-control for the amenorrhea which I stopped two months ago.

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I'm sorry to hear that it takes so long to see a doctor. When you attempt to get an appointment, please stress that you're experiencing muscle weakness upon exertion that worsens the more you exercise. Hopefully, they'll wake up and schedule an appointment soon.

Good luck! And please let us know what happens, okay?

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I'm sorry to hear that it takes so long to see a doctor. When you attempt to get an appointment, please stress that you're experiencing muscle weakness upon exertion that worsens the more you exercise. Hopefully, they'll wake up and schedule an appointment soon.

Good luck! And please let us know what happens, okay?

Thanks for the support, and will let you know :-) Xoxoxoxo

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A new question popped i my head, for anyone with experience in this.. whether it's my thyroid or lack of iron/b12.. should I be taking easy when I'm experiencing muscle fatigue or can I go on doing as I please on my bicycle :-D

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A new question popped i my head, for anyone with experience in this.. whether it's my thyroid or lack of iron/b12.. should I be taking easy when I'm experiencing muscle fatigue or can I go on doing as I please on my bicycle :-D

I don't know. I think that's a question for your doctor. :unsure: One thing to keep in mind is that sports injuries are much more common when people are extremely fatigued.

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I can understand the healthcare being slow. It's a pain in the rear.

However, if you do eventually get tested for coeliacs, don't forget to start eating gluten again before you do, so that it will show up in your tests that indeed your body cannot handle the gluten. I hope though that the reason you're losing strength isn't bad and can be easily fixed :)

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I would say it might be b12 / iron since I'm getting these sores at the corners of mouth.

Sores at the corners of my mouth went away when I stopped using toothpaste and mouthwash. I checked with my dental hygienist and she said it was really the brushing, not the polish, that cleans teeth. 2 years, 2 more hygienists and 2 dentists (we moved) have all confirmed that my teeth are fine (I floss 1x/day and brush 2x/day).

Not that it couldn't also be b12/iron issues, just that this helped me a lot! Full disclosure: I am consistently, barely below normal levels for my iron (have been since childhood).

Good luck!

On exercise, check out the greenling post with lots of responses on this sports/fitness forum about starting workouts again - consensus is that we recovering celiacs may need more rest days than we used to for our muscles/bodies to recover. So think about bicycling but perhaps not as many days a week as you would have 'once upon a time' - see how that goes.

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Sores at the corners of my mouth went away when I stopped using toothpaste and mouthwash. I checked with my dental hygienist and she said it was really the brushing, not the polish, that cleans teeth. 2 years, 2 more hygienists and 2 dentists (we moved) have all confirmed that my teeth are fine (I floss 1x/day and brush 2x/day).

Not that it couldn't also be b12/iron issues, just that this helped me a lot! Full disclosure: I am consistently, barely below normal levels for my iron (have been since childhood).

Good luck!

On exercise, check out the greenling post with lots of responses on this sports/fitness forum about starting workouts again - consensus is that we recovering celiacs may need more rest days than we used to for our muscles/bodies to recover. So think about bicycling but perhaps not as many days a week as you would have 'once upon a time' - see how that goes.

Hi Babysteps :-) Thanks for the recommendations!

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Have you been glutened recently? My husband found that after diagnosis and a gluten free diet he became much stronger despite thinking that he had no symptoms before diagnosis. I also became much stronger, but I had so many symptoms that it could easily have just been from being sick. He was on a business trip recently and suspects that he got a fair amount of accidental gluten consumption. Then he noticed that he was weaker. This has lasted a few weeks for him.

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I can understand the healthcare being slow. It's a pain in the rear.

However, if you do eventually get tested for coeliacs, don't forget to start eating gluten again before you do, so that it will show up in your tests that indeed your body cannot handle the gluten. I hope though that the reason you're losing strength isn't bad and can be easily fixed :)

Sorry about the misfire, folks. I'm a little ADD and my computer and connection are too slow.

I must disagree with both of these statements.

I caution anyone with possible celiac disease who has been gluten free for 2 months, especially those who have been gluten-free for 6 months, against gluten challenges. Your immune system will likely be hair trigger, greatly more able to respond more powerfully, and very angry. You can easily get a new autoimmune disease very quickly, and you may not be able to recover from it. This means you could permanently lose the functioning of an organ, or take many years to recover only partially. This means that the most likely organs to be the next target of your immune system are your brain or your endocrine system. I'm speaking from my own experience, as well as from listening to a gluten intolerant doctor who has written for celiac.com, who has more than 20 years of clinical experience specializing in gluten intolerance, and my own primary care MD, who has the same length of experience specializing in gluten intolerance, and who has it herself, as well as 4 years of thousands of email correspondences with thousands of other celiacs on another forum.

I also disagree that losing strength can be easily fixed. I have always loved bicycling, and fantasized about bicycle racing in the olympics as a 5 year old. I never competed, but became an aggressive amateur. I was diagnosed with celiac 4.5 years ago. As I stated on the second thread on this forum, if I push it or cycle more than 1 hour and 15 minutes, I can be wiped out and unable to do much for 1 to 3 days. I had a Great Plains Labs organic acids urine test, and one of their recommendations was alpha ketoglutarate. I take L-Arginine Alpha KetoGlutarate an hour before bicycling, then a large shake before riding, and I can get away with pushing it a little for an hour and 10 minutes, but still cannot handle bicycling for 2 days in a row. Apparently I have an impaired krebbs cycle (getting energy into cells). In 2010, I was up to riding 5 days a week again. However, last year I did not do so well, and ended by only cycling 1 or 2 days a week. Live blood cell analysis this year revealed a huge red blood cell oxidation problem, in addition to the hemolytic anemia which I have been aware of for 14 years, which is continuing to abate. My doctor spent 4 hours writing an email to me regarding mitochondrial energy problem help, in which she recommended 11 new supplements, some of which I have not gotten yet, due to verifying gluten-free status. I don't consider this easy.

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Dani,

I should mention also that I have exhausted adrenals and need to take thyroid, despite normal thyroid labs, or I can easily "crash".

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Hi Dani –

I am a gymnast and can totally relate to the constant "should I keep going, or stop" type questions. I recently started talking methyl b12 lozenges (after my serum b12 came back low) and have noticed a HUGE difference in my muscle strength. I mean, like night and day difference! I don't have much advice as far as recovery goes because I still haven't figured it out myself, but I do suggest that you follow your body and stop... especially since you're still recovering from celiac/gluten intolerance! Or....

It seems like it would make sense to shorten the amount of time you cycle each day... or even if you do decide to go for an hour one day, you could try going for 10 min the next... just to get out, you know? That works for me sometimes. :)

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