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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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answerseeker

Muscle Weakness And Pain

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I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?

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I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?

 

I know exactly what you mean!  Before I was diagnosed with Celiac disease I was so scared, I too was very weak.  I needed a walking stick just to walk very short distances.  I would describe it as being like a bag of jelly (Jello?), even when resting I felt like I had an inner shaking, not visible on the outside, my hair was falling out too.  Do you know what bloods you had done?  I was found to have extremely low ferritin levels at the time and other vitamin/mineral deficiencies.
 
It took a little while to get things back to 'normal' and just when I had got to reasonable health - bearing in mind my other illnesses, when it started all over again.  I finally (by a lot of research) found that if you have low magnesium levels it can cause problems with muscles and I now take a supplement daily, along with zinc,  which helps it work better and also Vitamin B complex.  Now, I can't say definitely that yours will be the same, but it is worth looking into.  Also, don't expect an over-night result, as I was taking it for a few weeks before I started to notice the difference, but I hope my experience helps you and gives you some hope.
 
I'm sorry I don't know much about the rashes etc., I hope someone on here is able to help you with this.
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I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?

answerseeker,    Two things come to mind,

 

1, See a Dermatologist

 

2,  Have your Vitamin levels checked.

 

My Vitamin D was dangerously low and it took 9 months of Prescription strength VITAMIN D to bring it up within a normal level.   As it came up, my neck, shoulder, arms, hands, fingers, back, and other joint pain found relief.    

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answerseeker, Two things come to mind,

1, See a Dermatologist

2, Have your Vitamin levels checked.

My Vitamin D was dangerously low and it took 9 months of Prescription strength VITAMIN D to bring it up within a normal level. As it came up, my neck, shoulder, arms, hands, fingers, back, and other joint pain found relief.

Vit D was at 38 in July doc says normal

B12 was at 482

Ferritin 31 just this month

Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/

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This has a list of causes of petechia (tiney red dots). I had those when I had ITP (very low platelet count) so I know it can be serious, but simple causes like coughing fits can cause it too.

 

I hope you find answers.,

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I get the red dots too.  Have for years.  I see a dermatologist every 3 months and they don't seem to be a concern since my blood work and vitamins hover in the normal range.  I have no working theory about these dots so I am interested in what you guys think too.

 

Colleen

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Colleen, look at my blog post picture, does yours look like that? That's the rash I get (red dots all over) not raised just flat

I *think* it comes after being glutened but still keeping track to see if it is indeed from gluten

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Vit D was at 38 in July doc says normal

B12 was at 482

Ferritin 31 just this month

Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/

Vitamin D should be over 50, b12 over 500 (that one is close) ferritin I am not sure.. and magnesium should be in upper range of normal , ie closer to 2.5.  good luck

and if the little red dots are petechial, perhaps some K2?

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Two things:

What are you doing for exercise?

Do you have any intolerences?

Yoga but I've missed the last 2 weeks due to this. My asthma has been bad too because of fall allergies.

Just lactose but I drink lactose free milk. Don't think I have any others but I will keep an eye out for a link between food and how I'm feeling

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Colleen, look at my blog post picture, does yours look like that? That's the rash I get (red dots all over) not raised just flat

Nope.  Mine are different.  They look like someone took a red ball point pen and made dots.  Yours definitely looks like a reaction to something.  Do you have any known allergies?  Changes in detergents or anything? 

 

Colleen

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Vitamin D should be over 50, b12 over 500 (that one is close) ferritin I am not sure.. and magnesium should be in upper range of normal , ie closer to 2.5. good luck

and if the little red dots are petechial, perhaps some K2?

Wow! I guess that's Kaiser for you. I've read Ferritin should be at least 50 but not sure either. My GI dr suspects either K or C because I get bruises that come from nowhere but of course Kaiser doesn't test for those :-/

It's really difficult to get any help from my Dr when every Kaiser Dr I've seen says my blood work looks "great"

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Nope. Mine are different. They look like someone took a red ball point pen and made dots. Yours definitely looks like a reaction to something. Do you have any known allergies? Changes in detergents or anything?

Colleen

Ok guess its derm time then. It came on hours after getting glutened (I had fried rice from Panda Express) but it comes and gos so I've just been taking pictures and hoping the derm can go off them

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yup.  Derm Time.  Let us know how it goes :)

 

Colleen

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Vit D was at 38 in July doc says normal

B12 was at 482

Ferritin 31 just this month

Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/

 

Vit. D should be closer to 50.

With muscle pain, magnesium and potassium come to mind.

With general weakness, B vitamins such as a good B-complex comes to mind.

 

Your "spaghetti legs" comment reminds me of how I felt when I had low blood sugar.  Try making sure you get enough protein, in small amounts throughout the day - rather than trying to just eat 3 meals per day.

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Wow! I guess that's Kaiser for you. I've read Ferritin should be at least 50 but not sure either. My GI dr suspects either K or C because I get bruises that come from nowhere but of course Kaiser doesn't test for those :-/

It's really difficult to get any help from my Dr when every Kaiser Dr I've seen says my blood work looks "great"

go in with the tests you want, when they won't do them tell them you want, in writing, why they won't.  Also, check the cost, perhaps you could afford the testing yourself.

PS with the easy bruising, testing for low C and K should be a "no brainer".

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Yeah should be no brainier! Even my GI that diagnosed me thinks for sure either k or c but both he and my gp says kaiser doesn't test for it. I'll ask for it and check the cost to have it done. That would certainly answer all my questions if those too were low. And when I researched causes for the low alkaline phosphate (it was only 22) one of the causes was vit c defiency

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Asthma?  Using an inhaler?  Side effects from steriods can cause bruising and broken capillaries -- especially if you are vitamin and mineral deficient.  Something else to think about!

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Hi Answerseeker.  It is strange you should have just posted this as I am looking for some of the same answers myself.  I have been gluten free, bar a few very annoying accidents, since May but a feel lot weaker in my body than I did a year ago pre-diagnosis, although the gastro symptoms have gone.   My legs and arms at times don’t feel as if they are part of me – very difficult to explain.  However I do find that I feel stronger if I eat more protein.

 

I also feel I am constantly on board ship - new since I went gluten-free.  Doctors seem at a loss.  I too have neck, and back, pain.  Yesterday I went to see a physio who found I have very tense neck muscles.  I'm wondering if this is affecting how my limbs are feeling?  Anyway, she is going to work on those what she told me is when I sleep I  should try to make a butterfly shape out of the pillow and put my  neck on that firm middle bit (the bunched up bit).  I don’t know if that will help your neck?  I am not sure what your red pinprick spots look like but I have had little red pinprick spots all my life and the doctor has never been concerned.  They did seem to get worse around the time of my diagnosis.  That said, my husband who is the picture of health has them worse than me!   

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it's more of a rash, you can see a pic on my blog. I emailed my dr. I can't see a derm unless I have a referral ugghh

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This is the email I sent my Dr. today and sent pictures of the rash, the bulging veins, and the bruising.

 

 

Dr. Baghat:

 

I've attached images of the bruising, the veins, and the red rash.

If you look over my office visits you will see my heart rate was always high, yet this has never been addressed

My MCV is 99 when I researched this, it was documented that anything over 95 should be looked at especially if symptoms are present. At least have hematology take a look

RDW,RBC 12.4 only .4 above the lowest range

I get muscle weakness and can barely make it up the stairs at times, fatigue, fast heart rate, rash, dizziness, shortness of breath, and asthma has been persistent.

please consult with hematology or refer me so I can make an appointment. I tried to make an appointment with Dermatology for the rash but I need a referral.


 

 

I'll update if I get any further answers from hematology. I think it's some type of anemia because of the high MCV what do you guys think?

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Asthma?  Using an inhaler?  Side effects from steriods can cause bruising and broken capillaries -- especially if you are vitamin and mineral deficient.  Something else to think about!

I've had asthma since 2012 and this is all new within the last 2 months. I was even on prednisone when I was first diagnosed with asthma because it was so bad and never had these symptoms so I don't know.

 

When the pulmonary specialist diagnosed my asthma he seemed to think there was something more because it was so bad. He suspected maybe vasculitis but my insurance changed and now I have Kaiser and it's like pulling teeth to get proper testing or to even see a specialist.

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This has a list of causes of petechia (tiney red dots). I had those when I had ITP (very low platelet count) so I know it can be serious, but simple causes like coughing fits can cause it too.

 

I hope you find answers.,

 

Ummm... I guess it helps to actually post the link, eh?  :huh: Sorry 'bout that. 

 http://www.mayoclinic.com/health/petechiae/MY01104/DSECTION=causes

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No idea about the red dots either, but hopefully the dermatologist will help you out.

 

Lori, I get the aches and muscle weakness after a glutening, but thankfully not as bad as your situation. More protein helps. Digestive enzymes help absorb it. Have you ruled out other intolerances as well?

 

I'm also not sure what "normal" Iron levels should be, but I do know that 12 or lower is anemic, so 30+ is probably not bad.

Good luck getting the testing done

 

Also, Christina,

I don't want to hijack the post, but just want to mention that I too had the "being on a ship" feeling for quite a while, and still get it on occasion. I was convinced something was wrong with my inner ear, but it seems to be more of a sinus thing affected by diet (soy, dairy, too much salt, and of course gluten will set it off). I'd recommend looking at dairy and soy as possible intolerances if you haven't already.

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No idea about the red dots either, but hopefully the dermatologist will help you out.

 

Lori, I get the aches and muscle weakness after a glutening, but thankfully not as bad as your situation. More protein helps. Digestive enzymes help absorb it. Have you ruled out other intolerances as well?

 

I'm also not sure what "normal" Iron levels should be, but I do know that 12 or lower is anemic, so 30+ is probably not bad.

Good luck getting the testing done

 

Also, Christina,

I don't want to hijack the post, but just want to mention that I too had the "being on a ship" feeling for quite a while, and still get it on occasion. I was convinced something was wrong with my inner ear, but it seems to be more of a sinus thing affected by diet (soy, dairy, too much salt, and of course gluten will set it off). I'd recommend looking at dairy and soy as possible intolerances if you haven't already.

I think I better take a look at soy. I drink an ensure shake pretty much everyday to get nutrients but it has a lot of soy and I also notice the more packaged gluten free foods I eat, the worse I feel.

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