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Ataxia


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#1 Loey

 
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Posted 24 October 2010 - 09:01 AM

I have always considered myself a klutz but in recent years that has changed radically into something else. I have taken several serious spills when I know I was paying attention to how and where I was walking. Five years ago I would walk (at a leisurely pace) for several hours a day. About 4 years ago I fell and broke 3 fingers while working on my job. Today I'm afraid to walk any distance.

Last night ( I always get up once during the night) I literally rolled out of bed and plopped on my face (also really slamming my body). I'm in a lot of pain today and have a black eye but thankfully have escaped breaking anything. We're going to see our son at college today and I'm grateful that I have gluten-free cover-up to put on it. It's embarrassing because when I do have a bruise people ask me "jokingly" if my husband beats me up and he's the sweetest, most supportive guy around.

Anyway, does this sound like Ataxia? Will it get better as the longer I am on the gluten-free Diet and avoid the foods I'm allergic to? Last night scared me (and my husband) a lot.

Thanks for all of your support!!!!!!!

Loey
(actually Lois Lane married to Superman)
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#2 Emilushka

 
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Posted 24 October 2010 - 09:12 AM

See your doctor. This could be B12 deficiency but it could be a lot of other things, too. It's time to get a workup and make sure it's not something more serious. Please do go in.
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#3 kareng

 
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Posted 24 October 2010 - 09:15 AM

Mrs. Superman,

I don't think I was that bad, but I did notice I was dropping things more and dragging my feet and tripping. I have been gluten-free since Feb and about a month ago, I was walking the dog and tripped ( just stumbled) on the uneven sidewalk. It occurred to me that I hadn't done that in ages. I definitely think I am less clutsy. Some of it is just me. :)
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#4 cyberprof

 
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Posted 24 October 2010 - 09:20 AM

I have always considered myself a klutz but in recent years that has changed radically into something else. I have taken several serious spills when I know I was paying attention to how and where I was walking. Five years ago I would walk (at a leisurely pace) for several hours a day. About 4 years ago I fell and broke 3 fingers while working on my job. Today I'm afraid to walk any distance.

Last night ( I always get up once during the night) I literally rolled out of bed and plopped on my face (also really slamming my body). I'm in a lot of pain today and have a black eye but thankfully have escaped breaking anything. We're going to see our son at college today and I'm grateful that I have gluten-free cover-up to put on it. It's embarrassing because when I do have a bruise people ask me "jokingly" if my husband beats me up and he's the sweetest, most supportive guy around.

Anyway, does this sound like Ataxia? Will it get better as the longer I am on the gluten-free Diet and avoid the foods I'm allergic to? Last night scared me (and my husband) a lot.

Thanks for all of your support!!!!!!!

Loey
(actually Lois Lane married to Superman)

I'm sure others with more knowledge than I will join in, but here's my $0.02 worth: If you are truly gluten-free (and you may have to be very strict), you are giving yourself the best chance to get better. I'm assuming that you've seen a doctor about the clumsiness and that the doc had no useful info for you.

Based on my experience, eat mostly whole foods that you cook yourself: Ignore the temptation to eat gluten-free treats (cakes, cookies, pizza crusts, bagels, bread) for now, instead eat rice, potatoes, veggies, meat. You may want to go dairy-free for a few months while you heal...sometimes dairy gives a reaction and slows healing.

Then get some gluten-free/DF vitamin/mineral supplements. Vitamin D, B-complex, fish oil, and magnesium are the ones that I would recommend (and that celiacs are most often deficient in). Look for ones that say "Gluten Free" on the label. Nature Made makes a lot of gluten-free vitamins. B12 is often needed: I take a sublingual one ("under the tongue") from Trader Joes but there are also others. I also take a D, Magnesium and calcium combo from Nature Made.

GOod luck to you!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 Loey

 
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Posted 24 October 2010 - 11:03 AM

Thanks to all of you WONDERFUL folks. I have spoke with others on the forum (and the new friend I met in my state made in my state yesterday thanks to this forum Posted Image about getting a vitamin work up). I only have a GI right now (jury still out on him) and plan to get a GP and GYN as soon as I can get referrals (too many doctors). I will not let this go unattended. I'm afraid of the bed thing happening again and am thinking of putting a chair next to it. We saw my soon yesterday and I walked very slowly. i told my husband today I need to be dropped off right at the restaurant.

I've only been gluten-free since June and recently discovered that a lot of the things I was eating weren't truly gluten-free because of FDA labeling ( or lack of it including all the things that are gluten).

I'm afraid that right now I look the the boy in Mask or the Elephant Man. I have a THICK layer of make-up on and covered the bruise but it's swollen and still obvious. Thought about staying home and letting my husband take him out but we had such a wonderful time with our son yesterday (first time he let us back in his life since he left in August and he really opened up to me). He asked us to come up again today. I found a restaurant that has a gluten-free menu but will still be very careful. Will bring a gluten-free protein bar from the health food store just in case.

Thank you all for everything you do. I plan on doing my best to help all I can!!!!!

Loey Posted Image



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#6 GFinDC

 
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Posted 24 October 2010 - 02:24 PM

Maybe it would be a good idea to lower the bed height closer to the floor for a while? Some bed frames have a couple different settings where you can hang the frame. Some people just put the mattress and springs right on the floor to lower the height too. I think that's pretty popular among students in fact. Maybe because they can't afford bedframes, not sure.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Lisa

 
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Posted 24 October 2010 - 02:37 PM

See your doctor. This could be B12 deficiency but it could be a lot of other things, too. It's time to get a workup and make sure it's not something more serious. Please do go in.


Yup! I could not walk a straight line for a while and had lots of balance issues. My B-12 and Folic Acid were tanked.

Do get a full metobolic work-up.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#8 Loey

 
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Posted 24 October 2010 - 04:42 PM

I'm sure others with more knowledge than I will join in, but here's my $0.02 worth: If you are truly gluten-free (and you may have to be very strict), you are giving yourself the best chance to get better. I'm assuming that you've seen a doctor about the clumsiness and that the doc had no useful info for you.

Based on my experience, eat mostly whole foods that you cook yourself: Ignore the temptation to eat gluten-free treats (cakes, cookies, pizza crusts, bagels, bread) for now, instead eat rice, potatoes, veggies, meat. You may want to go dairy-free for a few months while you heal...sometimes dairy gives a reaction and slows healing.

Then get some gluten-free/DF vitamin/mineral supplements. Vitamin D, B-complex, fish oil, and magnesium are the ones that I would recommend (and that celiacs are most often deficient in). Look for ones that say "Gluten Free" on the label. Nature Made makes a lot of gluten-free vitamins. B12 is often needed: I take a sublingual one ("under the tongue") from Trader Joes but there are also others. I also take a D, Magnesium and calcium combo from Nature Made.

GOod luck to you!


Thanks so much for the helpful reply (and to everyone else that replied and gave me great advice and support). What type of doctor would do the blood work? A I've mentioned before I just moved to a new state so I have to get a GP, etc. My GI just started taking me seriously after the capsule endoscopy showed an ulcer. My old GP and GI were amazing and very knowledgeable, supportive, etc. I'll have a biopsy in 3 weeks. I'm in a very small town so it took that long to book the anesthesiologist (plus they might wind up doing more things once they're in there).

I started taking the Nature Made Multiple Vitamins and stopped eating anything that isn't whole food (started the elimination diet about a week ago). I initially had felt better when I first went gluten-free but then added the supposedly gluten-free products in and then had a bad flare 5 weeks ago.

You are all really helping me get through some serious issues and I hope you all know how much it means!!!!!

Loey Posted Image



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#9 GFinDC

 
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Posted 25 October 2010 - 02:16 PM

Hi Loey,

There is a doctors section on the forum where you can search for info on doctors for your area. Also talk to your local celiac group about doctor recommendations.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 Lisa

 
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Posted 25 October 2010 - 02:32 PM

I also want to add that until healing has taken place, absorption of anything is not complete.

Loey you might want to find a good doctor and request B-12 injections. It's the closed thing to "speed" that I have actually known. :rolleyes: Guess I need to clarify this....when it takes all your energy to do anything, after a B-12 injection I felt almost normal again...when I was newly diagnosed.

You can PM your state and city and I will try to find you a support group or, those who can recommend a medication profession in your area.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#11 ravenwoodglass

 
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Posted 25 October 2010 - 03:13 PM

It could be ataxia. The advice on B12 is good. If your doctor will not do injections get the sublingual form. It disolves under the tongue and is absorbed there bypassing the damaged gut. As mentioned B12 taken in a pill you swallow is useless until you heal. If it is gluten ataxia then you should improve once you are on the diet. Since you haven't had your biopsy yet you shouldn't be eating gluten free until that is done. Once you are gluten free it can also be a good idea to get a referral to a good PT who will be able to help with the balance issues. My ataxia was severe enough that I couldn't walk unaided but I was doing much better within a couple of months.
Do be careful, make sure you get in the habit of exiting the bed holding on to something. It is helpful to do it slowly. Roll to your side and bring your legs from the knee down over the side of the bed. Slowly raise yourself to a sitting position then slowly while holding the headboard or touching the wall raise up to a stand. That will help prevent you falling. If it doesn't resolve once you are on the diet do consult a neurologist. A brain MRI will show something called UBOs or bright white spots in celiacs with ataxia. Many neuros in the US don't know they are related though.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#12 Loey

 
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Posted 25 October 2010 - 03:43 PM

It could be ataxia. The advice on B12 is good. If your doctor will not do injections get the sublingual form. It disolves under the tongue and is absorbed there bypassing the damaged gut. As mentioned B12 taken in a pill you swallow is useless until you heal. If it is gluten ataxia then you should improve once you are on the diet. Since you haven't had your biopsy yet you shouldn't be eating gluten free until that is done. Once you are gluten free it can also be a good idea to get a referral to a good PT who will be able to help with the balance issues. My ataxia was severe enough that I couldn't walk unaided but I was doing much better within a couple of months.
Do be careful, make sure you get in the habit of exiting the bed holding on to something. It is helpful to do it slowly. Roll to your side and bring your legs from the knee down over the side of the bed. Slowly raise yourself to a sitting position then slowly while holding the headboard or touching the wall raise up to a stand. That will help prevent you falling. If it doesn't resolve once you are on the diet do consult a neurologist. A brain MRI will show something called UBOs or bright white spots in celiacs with ataxia. Many neuros in the US don't know they are related though.



I had the biopsy for Celiac and it (and all the other tests) came back positive. I moved to a new state literally the day after I got the test results. I was following what I thought was a gluten-free diet and felt better for well over a month. Then BAMM a flare. I now know that just because something is labeled gluten-free it isn't necessarily the truth. I also have been trying the elimination diet with some success.

I had to be proactive to get the capsule endoscopy (I had it last week) and my new GI read it the next day (I was told it would take 2-3 weeks to get the results) and he called me immediately to tell me I have an ulcer. Total 360 in his attitude. No longer dismissive and my calls are returned immediately. I have a biopsy of the ulcer scheduled for November 12th. I live in a really small town and he wanted a special anesthesiologist.

I will certainly look into the B-12 shots or the under the tongue pills. I'm an unemployed elementary and special education teacher and I really want to be back in the classroom. First I have to be able to stand up for a whole day.

I'm amazed at how many of the related disorders I suffer from. Thanks for all of the wisdom and support. It's hard enough to move but to be sick at the same time makes it more difficult. I'm a positive person and will do whatever it takes to get back in shape. I also want to contribute whatever I can to this forum. I'm an avid researcher so if anyone ever needs a resource geek to look something up just let me know.

Loey Posted Image (the icon from the psilly thread)

P.S. will also take the advice about getting up from the bed. I think i was in a deep sleep Saturday because i got up at 3:00AM and didn't get to bed until 1 AM. I usually fall when I'm awake and walking Posted Image
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#13 Skylark

 
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Posted 25 October 2010 - 03:51 PM

I fell flat on my face why my thyroid got really low this summer so I feel for you. Turns out lack of coordination is one of the signs of hypothyroidism. Just something else to look at.
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#14 Loey

 
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Posted 28 October 2010 - 11:27 PM

I'm sure others with more knowledge than I will join in, but here's my $0.02 worth: If you are truly gluten-free (and you may have to be very strict), you are giving yourself the best chance to get better. I'm assuming that you've seen a doctor about the clumsiness and that the doc had no useful info for you.

Based on my experience, eat mostly whole foods that you cook yourself: Ignore the temptation to eat gluten-free treats (cakes, cookies, pizza crusts, bagels, bread) for now, instead eat rice, potatoes, veggies, meat. You may want to go dairy-free for a few months while you heal...sometimes dairy gives a reaction and slows healing.

Then get some gluten-free/DF vitamin/mineral supplements. Vitamin D, B-complex, fish oil, and magnesium are the ones that I would recommend (and that celiacs are most often deficient in). Look for ones that say "Gluten Free" on the label. Nature Made makes a lot of gluten-free vitamins. B12 is often needed: I take a sublingual one ("under the tongue") from Trader Joes but there are also others. I also take a D, Magnesium and calcium combo from Nature Made.

GOod luck to you!



Still looking for a GP in my new town/state so I can have my blood tested for vitamin deficiencies. Following a gluten-free diet (slipped a bit when I saw all of the products marked gluten-free but I hadn't learned about the FDA and how little they currently expect the manufacturers to do with labeling. Back to basics right now (modified elimination diet so Ill hopefully feel better and remain upright.

Having ulcer biopsied on November 12th. Doctor did a 360 in his attitude after the results came back from my capsule endoscopy. I think he thought I was shopping for pain meds. They're the last thing i want. Don't want to mask the pain or get addicted. He's no longer dismissive and his nurse returns calls immediately. I do have a referral if I don't like him after the biopsy (and other possible surgery once he gets in that). I came from a city/state with a large teaching hospital and I would have had the biopsy by now. It's tiny here and he wants to use a special anesthesiologist.

Loey


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