Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Can Walk Again! Want To Celebrate!


Lynayah

Recommended Posts

Lynayah Enthusiast

This is a message for everyone who wonders if there is hope out there.

Yes, there is.

For many years now, my feet have been in so much pain that I could walk for only short periods of time, and I could only wear Crocs, even with business suits.

I hated having to wear Crocs all the time, but I was very grateful for at least finding a shoe that would allow me to walk a little. I will always have a soft-spot for those horrible, ugly shoes. They saved me.

Well, it turns out the foot pain was part of my reaction to gluten. Slowly, I've been getting better every day (unless I make a mistake which causes some of the pain to return for about a week). After a while, I was able to wear Crocs all day with just a little swelling but much more comfort.

Then, I was able to wear leather shoes, as long as I was sitting most of the day or walking very little. This was a big deal because I couldn't do it for years.

Anyway, yesterday I went to the Museum of Science and Industry in Chicago and . . . or my goodness I am so excited to report this . . . I WORE REGULAR, LEATHER SHOES ALL DAY!

Okay, so the shoes still weren't the greatest fashion statement, they are made for comfort and not for style, but I WORE THEM ALL DAY without a problem. AND I had no foot pain or swelling at the end of the day, either.

If you are in similar pain due to gluten-intolerance, please know there is hope. Please know that despite going through the trouble of learning how to live gluten-free, and despite the horror of having to give up so much, the diagnosis can be a very, very great blessing once you begin to get on the other side of things.

Who the heck needs toast when, in exchange for it, you can walk like a normal person?

WHOOOOO-HOOOOO!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Roda Rising Star

I have had foot pain (not to the extent of you and not gluten related) due to plantar fasciitis and flat feet. No shoe would be comfortable. The foot problem started causing me leg, back and hip pain. In my neverending search for a comfortable shoe with a good arch support, I found Keen shoes. I love them. The first time I put them on I was in heaven. They were comfortable right out of the box. I now have one pair of sandals (almost worn out) and three pair of regular shoes and I want more. They are a little odd looking but the comfort factor makes up for it. They do have some cute sandals and mary jane type shoes that would look good with buisness casual. I am glad you are doing well and have continued health.

ravenwoodglass Mentor
Who the heck needs toast when, in exchange for it, you can walk like a normal person?

WHOOOOO-HOOOOO!

:lol:

Congrats on the pain free steps and may a pretty and comfortable pair of shoes be in your future.

nu-to-no-glu Apprentice

You should go dancing in your not so fashionable leather shoes...and strut the heck out of them :)

chasbari Apprentice

I understand your joy! A year ago I could barely get out of a chair and wore slippers everywhere to lessen the extreme pain and gelling from my RA. Once gluten-free I found that the RA just started to melt away. It's hard for me to realize that a bad day now is still ten times better than my best days used to be. Hey, the Chicago Museum.... big place... lots of walking.. way cool!

CS

Alphawave Rookie

I too had huge amounts of joint pain that extended to both feet. Because I am type 1 diabetic, doctors kept telling me it was due to the diabetes. Yet, my diabetes is in "tight" control, so I never believed that. Finally getting a diagnosis of Celiac (+ anti gliadin antibodies) on Oct 7th, and going gluten-free since then, my foot pain is dramatically lessened, and knee pain is more tolerable. My CRP was 9.2 on October 2nd, and I was low in Vitamin D, B's on lab tests. That means loads of inflammation. Maybe you had that kind of inflammation....and now it's going down!!!!!!!

Ahorsesoul Enthusiast

This is such a big step!

Don't you just love a success story.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

Wonderful news! :D

Lynayah Enthusiast
:lol:

Congrats on the pain free steps and may a pretty and comfortable pair of shoes be in your future.

Thank you, Ravenwoodglass. If not for you, I don't even know how far I would have come by now. You have been wonderful in supporting my posts and telling it like it is.

So, I'm thinking that Sex in the City shoes must be in there somewhere! <laughing> Except I'd kill myself falling off of them (gluten ataxia?). <laughing more>

Lynayah Enthusiast
You should go dancing in your not so fashionable leather shoes...and strut the heck out of them :)

Oh yes! I'm cranking up the celiac disease player tonight and dancing my heart out -- hey, who needs to wait for a crowd. I'm ready to dance! (I will, of course, draw the curtains first. Goodness knows that the world may not be ready for a crazy woman who is high on dancing in granny shoes!)

That'll be my next step . . . opening the windows!

Thank you for your fun post.

Lynayah Enthusiast
I understand your joy! A year ago I could barely get out of a chair and wore slippers everywhere to lessen the extreme pain and gelling from my RA. Once gluten-free I found that the RA just started to melt away. It's hard for me to realize that a bad day now is still ten times better than my best days used to be. Hey, the Chicago Museum.... big place... lots of walking.. way cool!

CS

Oh my gosh, slippers! Yes, yes. I know. I used to always carry a pair of Isotoners with me (with support insoles inserted) just in case I couldn't handle the Crocs any more. Last year in Disney World, those darn slippers kept me from killing myself (well, maybe not that bad, but goodness knows, I thought I was going to die).

Before that, when I would go to fashionable functions - I used to have to give huge presentations in front of hundreds of people . . . I would wear normal shoes until I wanted to stab myself . . . and then when no one was looking, I would put on the slippers. This worked especially well at weddings. I just waited until everyone had a drink or two, and then off with the shoes and on with the slippers! (That was back in my pre-Croc days when I could still get by with normal shoes for a half an hour or so.)

What really kills me is that so many wonderful people out there have the same issues as you and I do, but they have no clue as to what is making them so miserable -- they believe they are destined to a life with pain.

With each passing day, I am becoming more of an activist. My heart breaks for the all the undiagnosed folks out there.

Perhaps all this is meant to be. As they say, everything happens for a reason. :)

Lynayah Enthusiast
Wonderful news! :D

Love your signature! I want to see you do the Thriller Dance! I hope post it on YouTube or invite me to come to the show.

You rock!

ravenwoodglass Mentor
Thank you, Ravenwoodglass. If not for you, I don't even know how far I would have come by now. You have been wonderful in supporting my posts and telling it like it is.

So, I'm thinking that Sex in the City shoes must be in there somewhere! <laughing> Except I'd kill myself falling off of them (gluten ataxia?). <laughing more>

The first thing I did when my ataxia improved was to go out and buy a few pairs of heels. Not a smart move on my part. I soon learned that better didn't mean gone and after almost falling over a few times I realized that pretty shoes with low heals are more my speed. There's lots of them around nowadays, as the covered floor in my closet shows. :lol:

Lynayah Enthusiast
The first thing I did when my ataxia improved was to go out and buy a few pairs of heels. Not a smart move on my part. I soon learned that better didn't mean gone and after almost falling over a few times I realized that pretty shoes with low heals are more my speed. There's lots of them around nowadays, as the covered floor in my closet shows. :lol:

LOL!

Hey, I am thinking for us, who needs Sex in the City shoes when someone can have a killer attitude like yours? Attitude is everything.

I am changing my post: Forgetaboutit! Leave the heels to those who have nothing else to fall back on. As for you and me (and countless others here), SEXY IS NOT IN THE SHOES!

ravenwoodglass Mentor
I understand your joy! A year ago I could barely get out of a chair and wore slippers everywhere to lessen the extreme pain and gelling from my RA. Once gluten-free I found that the RA just started to melt away. It's hard for me to realize that a bad day now is still ten times better than my best days used to be.

CS

The same for me. I had been told for years I had to just learn to live with the pain. Out of curiosity have you had a gene panel done? I didn't know until after my panel was done a few years after I was diagnosed that my celiac gene is considered an RA related gene here in the US. I don't think it is a coincidence that many with RA are also diagnosed with IBS. It is a recognized celiac related gene in other countries though as I found when I researched it a bit.

It is so wonderful to be able to do things like type, walk, garden and excercise without pain after so many years of every movement bordering on agony. It's even better to just be able to get out of bed and be able to move in the morning it used to take me mucho meds and a long hot shower to even think of functioning at all. It was 7 years ago 11/20 that I was diagnosed and it still at times seems a miracle to me.

I am glad you had the same result and I hope soon there are no bad days at all.

ravenwoodglass Mentor
Good one!

Hey, I am thinking for us, who needs Sex in the City shoes when someone can have a killer attitude like yours? Attitude is everything.

I am changing my post: Forgetaboutit! Leave the heels to those who have nothing else to fall back on. As for you and me (and countless others here), SEXY IS NOT IN THE SHOES!

It sure isn't! Dancing gracefully barefoot or in flats is much sexier than trying to do a sexy spin into your partners arms and ending up looking like a windmill trying to catch your balance and ending up on your butt. Been there done that won't go back.

jerseyangel Proficient

Congratulations!!! :D Just amazing news to hear--isn't it something how many things we didn't realize were even affected by gluten?

I could always walk fine, but I was just too tired to most of the time due to the severe anemia (that was always attributed by the doctors as because I was female). What freedom to be able to go from doing one thing to another without having to lie down :rolleyes:

Pretty soon you'll be kicking up your heels!! :D

Lynayah Enthusiast
Congratulations!!! :D Just amazing news to hear--isn't it something how many things we didn't realize were even affected by gluten?

I could always walk fine, but I was just too tired to most of the time due to the severe anemia (that was always attributed by the doctors as because I was female). What freedom to be able to go from doing one thing to another without having to lie down :rolleyes:

Pretty soon you'll be kicking up your heels!! :D

It really is amazing. Thank you for your post!

In my life I've had everything from a Hypogammaglobulinemia diagnosis (from early childhood -- took shots for years) to goodness knows what else.

There is so much learning that needs to take place out there. We are the lucky ones. Just think about all those out there who do know know what is happening to them. This haunts me.

Great reply -- thanks again.

cat3883 Explorer

That is great news! My gastroenterologist says he believes most people diagnosed with fybromyalgia would test positive for Celiac Disease. My story is about depression. I had been on antidepressants and antianxiety meds for 13 years. I have been gluten free since October 2008 and am medicine free. No more depression. No more anxiety. Life is good. I never want that poison (gluten) in my body ever again.

Lynayah Enthusiast
That is great news! My gastroenterologist says he believes most people diagnosed with fybromyalgia would test positive for Celiac Disease. My story is about depression. I had been on antidepressants and antianxiety meds for 13 years. I have been gluten free since October 2008 and am medicine free. No more depression. No more anxiety. Life is good. I never want that poison (gluten) in my body ever again.

Wow -- good for you! I cannot even imagine how trying those 13 years must have been. You are a hero. Congratulations!

Life is indeed good. :)

happygirl Collaborator

Lynayah .... so happy you are doing so well!!!

Lisa16 Collaborator

Congratulations! I am so happy for you. :D

I would celebrate by buying tons of beautiful new shoes. If ever there was a time to do it, well you have a justifiable excuse. :lol:

Once you find a brand/style/size that works for you, the internet works great. So I will share my secret go-to places for beautiful, comfortable shoes on the internet.

There is, of course, zappos.com. But they have an outlet called 6pm.com (where a girl can get a 200$ pair of shoes for 20-30$ sometimes) and I have had some real success on (Company Name Removed - They Spammed This Forum and are Banned). There is also smartbargains.com. Shoes and slippers and sneakers.

Here's to many happy, stylish miles in your future!

Eric-C Enthusiast
I have had foot pain (not to the extent of you and not gluten related) due to plantar fasciitis and flat feet. No shoe would be comfortable. The foot problem started causing me leg, back and hip pain. In my neverending search for a comfortable shoe with a good arch support, I found Keen shoes. I love them. The first time I put them on I was in heaven. They were comfortable right out of the box. I now have one pair of sandals (almost worn out) and three pair of regular shoes and I want more. They are a little odd looking but the comfort factor makes up for it. They do have some cute sandals and mary jane type shoes that would look good with buisness casual. I am glad you are doing well and have continued health.

first congrats to the OP. I went through something similar.

To Roda, have you gone and had inserts made for your shoes? They are expensive but have made a huge difference for me. When I first got them, before going gluten-free, I had to have them on all the time, even around the house. After going gluten-free I just wear them when I wear shoes and no problems.

I wear Ecco's and only Ecco's....I forget the tennis shoe I wear but in tennis shoes I pull out the regular insert, put in the one I had made and their great. Did a few weeks at Disney no problems at all.

chasbari Apprentice
What really kills me is that so many wonderful people out there have the same issues as you and I do, but they have no clue as to what is making them so miserable -- they believe they are destined to a life with pain.

With each passing day, I am becoming more of an activist. My heart breaks for the all the undiagnosed folks out there.

Perhaps all this is meant to be. As they say, everything happens for a reason. :)

My family thinks I am a bit loco because I see symptoms of this everywhere now. I. too, have become an activist of sorts and take any chance I can to educate those willing to listen as long as they don't get that glazed over look in their eyes (is that the gluten glaze talking???) Even though people want to have pity on me for having to "give up so much" dietarily I really feel it is the other way around. Yes, and while the food commercials and cooking shows shows like Diners, Drive-ins and Dives that my family loves to watch do get me every once in a while I will never trade that for this. I have never, and I truly mean never, felt this good in all my living years. The last few were dying years..but now I am back to living and I am going to chose that any day over the other!

May you have many years of slipper free dancing.....oh, but slippers are still good. I have fun with the thought that since people expect me to wear inappropriate footwear, I do so unapologetically with no hesitation anymore even though I can now run like the wind and wear real shoes too.

CS

Roda Rising Star
first congrats to the OP. I went through something similar.

To Roda, have you gone and had inserts made for your shoes? They are expensive but have made a huge difference for me. When I first got them, before going gluten-free, I had to have them on all the time, even around the house. After going gluten-free I just wear them when I wear shoes and no problems.

I wear Ecco's and only Ecco's....I forget the tennis shoe I wear but in tennis shoes I pull out the regular insert, put in the one I had made and their great. Did a few weeks at Disney no problems at all.

I don't have custom inserts for the keen shoes. They do however have removable insoles and will fit custom orthotics well. I started with a pair of sandles and I literally wore them all day(even to work) until my pain went away. I then ordered some shoes that tied and the inserts that came with them were almost as comfortable as the sandles. When my feet began to hurt again about 8 months later, I realized that the inserts wore out. I work 12 hr night shifts and am on my feet constantly. Keen does not offer replacement ones but there were a few brands they recommended. I bought superfeet to replace them and they are comfortable again. I am considering going to my husband's foot doctor to get evaluated. I had seen a different one who prescribed orthotics, but I never went and got them since I found those shoes and felt better.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.