• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ataxia
0

14 posts in this topic

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)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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 smile.gif 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 smile.gif

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 biggrin.gif

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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 hidden-27.gif (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 sad.gif

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,328
    • Total Posts
      935,514
  • Member Statistics

    • Total Members
      64,989
    • Most Online
      3,093

    Newest Member
    Jaf
    Joined
  • Popular Now

  • Topics

  • Posts

    • First degree relatives of celiacs should be tested every 2 years in the absence of symptoms & immediately if symptoms present since celiac can present at any age. Celiac affects every cell in the body & inflammation is common. My inflammation began in my lower back and the bend of my leg (on the back side of the knees). It progressed to literally everywhere. You name it, back, neck, arms, legs, ankles, hips, wrists, fingers. Excruciating pain as well as swelling. So excruciating that opiates didn't even phase it. I just had to bear it. I would take ice packs & use them until the area was pure D numb. You're never supposed to leave ice on that long but if I hadn't then I would have shot myself. I can not begin to describe the intensity of the pain. The last year before diagnosis, I was sure that within a year, I would be confined to a wheelchair for the remainder of my life. Now, 5.5 years gluten free, I can't tell you the last time I took a Tylenol or any other anti inflammatory. In fact, I'm not on any meds at all. Nothing.
    • Thanks for all that info and the links.  It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free.  Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac.  They are saying to give it 2-3 months to see how I feel then.  My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February.  That is the most exciting thing so far.  My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet.  I still hope to feel a lot better as more time goes by without gluten....I hope.  I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch.   I started a food journal.  I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work.  It sounds like we all need to become food and symptom detectives when dealing with this.  Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free.  It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it.  The internet and this site here helps a lot with some of that.  Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.  Ya, I've been hearing "it seems like something autoimmune" for the past few decades.  It'd kind of be helpful to figure out exactly what.  I'm so tired of being tired.  I am sure you all can relate to that.  You just want to wake up and feel good.  
    • HEB organics does not bother me at all. Their plain one has to be boiled before I can drink it so I tend to use it in moderation in cooking...it also has xantham gum which explained that issue. MALK gives me no issues (Local Only Brand I think). Used to drink something called Mooala but could not find it unsweetened after my UC dia.  Almond Breeze is next up but I can only drink about a cup of it before I start getting burping issues, silk bothers me the least but still causes some issues. Silk cashew is alright and I use it all the time with NO issues at all...but I use it in cooking and do not think I have ever used it without boiling it first either in a icecream base or mixing it in a soup, cheese sauce, or adding a bit to eggs for fluff.   Hmm there is one other brand of macadamia milk that dose not bother me and Good Karma Flax milk I have NO issues with....been a good 6 months since I had any though. http://malkorganics.com/products/   https://www.heb.com/product-detail/h-e-b-organics-unsweet-vanilla-almond-milk/1741526 ^ Two that give me the least issues  
    • Oh goodness me so do you guys bother to get histamine level diagnosed or do you just treat it as you did the food diary ? taking note of high histamine time of year/ season and diet into your seasonal food diet? I'm pretty good at rotating foods I've done that longer than I've known about my issues from a nutritional standpoint I rotated which is why until the gluten challenge derailed my immune system entirely. it was challenging enough to do that gluten challenge I am not really up for more testing. I have symptoms of IC, POTS, fibromyalgia, and now you reveal that yes histamine threshold are part of the celiac autoimmune party bag too. how do all branches of medicine not find this group the most intriguing group of people ever? Really?Or Do you just all avoid them and go on your merry way? Ennis - what almond milk can you drink ? the almond milk 3 we tried/ bought prior to making my own (had unlabeled ingredient  fortified and thickeners corn derived added. ) I was shocked to call and discover it had it in (not labeled as it was corn not top 8) it finally explained why the right elbow joint hurt but it was a small enough derived amount of derived  corn not to trigger the Full blast corn intolerance symptoms. For this reason and now the orange juice incident I'm really leery of unidentified corn or corn derivatives or highly processed any additive for they are prevalent in processed land.  
    • Yeah I have 2 stationary pedal bikes. I use one on the desk sometimes while watching a show and work out my arms. I keep one under the desk and pedal on it for hours a day, really helps with my restless leg issues and stress (just gotta keep moving or I start feeling like a panic attack is coming on trapped by life like a rat in a cage. If you need to know were to find the ground cocoa nibs look up crio bru, they sell it as a coffee replacement for $23 for 1.5lbs they have different origin and different roast levels so you can get different flavored cocoa nibs I get several and mix them up.
  • Upcoming Events