Has Anyone Had These Symptoms?

[eileen.e.wells]

i had a baby seven weeks ago....and ever since have been trying to figure out what is going wrong

with me. my friend said my symptoms are just like her friend with celiac and to have my doctor test me for

gluten alergy. sure enough i am very alergic to gluten. so i have been on a strict gluten-free diet for two weeks now. but i still can't walk. i'm very wably and can't keep my balance. i have to hold on to something to even walk through the house. i also can't write, type(it is very difficult to type this)

my doctor has tested me for all the usual things with no luck. i'm hoping a few weeks off ( 3-6 )of gluten will start to make a difference....but i don't know if anyone has had simular symptoms. my friend's friend was way different than me. my nateropathic doctor said my numbers aren't high enough to be celiac but i guess i'm gluten intolerant.. i would feel better knowing it was a reaction to gluten-rather than not knowing why i can't walk, write or do any coordination -type stuff.

any in-sight????!!

[mouse]

I would recommend that you see a Neurologist for the walking and balance problems. Gluten can cause that. PLEASE stay on the gluten-free diet, because if it is a neuological problem, then staying gluten-free helps it from progressing. Listen to your doctor and not your friend in this instance. And Welcome to the forum. You will find much help here from friendly members. Do not hesitate to ask any questions as we consider no question dumb. We are quiet on the weekends and more will post to your question during the week.

BTW, it does not matter whether it is Celiac or gluten intolerance, the diet is necessary for both. And you need to avoid cross contamination as that slows your recovery.

[Fiddle-Faddle]

Hi, Eileen, welcome aboard! Congratulations on your baby--is this your first? It can be totally overwhelming even without health issues. Many new moms have a terrible time getting started on breastfeeding, mostly because the idiot doctors don't realize how often you REALLY need to nurse a new baby (no, it's not every 2-3 hours, unless you want your milk to dry up!)--is that going okay for you?

How were you diagnosed? Does the doctor who diagnosed you realize that there is a huge difference between being allergic to something and being intolerant? (But Arnetta is correct--both require a strict gluten-free diet.) What were all "the usual things" your doctor tested you for regarding your wobbliness and lack of balance?

This board is a wonderful source of information and support. I had an awful time figuring out exactly what celiac disease is, as I thought it involved an allergic response, too! I've learned so much from this board!

I'm very ignorant about your particular situation, but hopefully someone else will recognize your symptoms. The only person I know who had problems like that had MS--I hope that's not the case!

Keep us posted, and I hope you feel better very soon!

(Edit: there are lots of good recipes on the recipe board here, and if there's anything you want to eat that you don't have a gluten-free recipe for--ask! Someone here probably has already experimented and made it, and people here are really generous about posting recipes!)

[Vladimir Gluten]

Balance Problems. Yup. I have them. I'm 4 weeks into the gluten-free diet. I had them occasionally in the last six months and now that I am gluten-free I still have lighter episodes. I expect them to go away as I follow the gluten-free diet.

Congratulations on your child.

[SueC]

My celiac problems were ALL neurological. I have been gluten-free for over a year and am doing much better but still get leg weakness and tingling. I was tested for MS and it was ruled out. I would recommend seeind a neuroligist and having an MRI of your head but it could definitely be from gluten!!! A few weeks gluten-free is only the start. I think it takes much longer to heal neurological problems that is does gastric problems. Hang in there but don't get too freaked. Stay gluten free. It takes awhile but please in the meantime get other problems ruled out.

By the way what was your tTg level?

[Nancym]

Try getting a good vitamin B complex. I think it helped with my neurological issues. And a B12 that is sub-lingual (in addition).

[Lisa]

Before and after my dx, I found myself walking almost side-ways. I had to watch myself walking down town on the bricks and stepping very carefully as to not stumble. My husband and I have been boaters for 30 years and I would easily jump from dock to boat with no problem. After Celiac, I need his help and his hand to get me on a boat and off. I remember that I froze on a small dock and was unable to move, without his help.

To ease your mind, it did get better with the gluten free diet. I have no more issues, unless glutened, which happens from time to time.

Celiac often shows it's ugly head during a trama, such as childbrith, an illness, stress and.....

Your pregnancy most likely kicked it of for you. Dormant for some time and prehaps intestinal damage when you had no symptoms. It is a very strange disease.

If there are any questions regarding your diet, PLEASE feel free to ask away. That's why we are here.

Lisa

[lurven71]

I had terrible balance and walking problems too! I would be standing still and just tip over. I would also have the feeling that I couldn't really control my legs. It was terrifying.

I could also barely type.

My symptoms went away pretty quickly after going gluten free. Good luck!

[eileen.e.wells]

I had terrible balance and walking problems too! I would be standing still and just tip over. I would also have the feeling that I couldn't really control my legs. It was terrifying.

I could also barely type.

My symptoms went away pretty quickly after going gluten free. Good luck!

dear lurven71

thank you for responding! i was very excited to get your message because the description of your symptoms sound very simular to mine!! i too feel like i could just tip over if i look around too fast or something. and it also feels like i can't control my legs...or they aren't working right.

i have been off of gluten for around 8 weeks...and i am improving.

i can type much better (i think as slow as i could before). and i can write again about 80% normally.

the walking problems have improved, i still have to go slow, but i'm not AS wobbly.

yes, it is very terrifying. i can't just carry my baby any where. only short, safe distances. or i get my husband to help. i'm only 8 weeks gluten-free, did it take you much longer?

thank you for the support. i can't tell you how much better i feel knowing i'm not the only person to have experienced these kind of wierd symptoms.

eileen

[eileen.e.wells]

Before and after my dx, I found myself walking almost side-ways. I had to watch myself walking down town on the bricks and stepping very carefully as to not stumble. My husband and I have been boaters for 30 years and I would easily jump from dock to boat with no problem. After Celiac, I need his help and his hand to get me on a boat and off. I remember that I froze on a small dock and was unable to move, without his help.

To ease your mind, it did get better with the gluten free diet. I have no more issues, unless glutened, which happens from time to time.

Celiac often shows it's ugly head during a trama, such as childbrith, an illness, stress and.....

Your pregnancy most likely kicked it of for you. Dormant for some time and prehaps intestinal damage when you had no symptoms. It is a very strange disease.

If there are any questions regarding your diet, PLEASE feel free to ask away. That's why we are here.

Lisa

dear lisa,

thankyou for responding! your story was very encouraging to me.

i have been gluten-free for about 8 weeks, and i am improving slowly. i can type normally now and write almost normally. the walking problems have got better. i can't wait till i can run!

eileen

[tiredofdoctors]

Hi Eileen . . . . welcome to the forum. . . . I would just like to say that, if you are finding that you're making improvement, please make sure that you stay gluten free. It's really important for your neurological health. I'm so glad that you're getting better, and I wish you the BEST of luck. Congratulations, too, on the birth of your baby!!

xoxoxo

Lynne

[capecodda]

Yes, and it is really disturbing at first. I used to be a good dancer and very very coordinated. I feel like I am all thumbs sometimes, or just tip sideways all of a sudden. I don't feel dizzy though just embarrassed. I have dropsys too, like my hands just miss or fail to grasp things correctly.

[Lymetoo]

Welcome eileen!! I think everyone has helped you a lot!!

Now...is it a boy or a girl???

[Fiddle-Faddle]

Just in case it takes you as long as it took me to REALLY figure out the gluten-free diet--it took me a good 6-8 weeks to figure out that there is "hidden" gluten in unlikely places-- such as most brands of soy sauce,

"light" ice cream, some seasoning blends, and even the glue on envelopes!

[eileen.e.wells]

Welcome eileen!! I think everyone has helped you a lot!!

Now...is it a boy or a girl???

lymetoo,

yes, everyone has helped alot!

and thankyou for asking..... it is a BOY!!!! a cutie, cuddley boy! i would love to put a picture of him when i figure out how.

[eileen.e.wells]

Hi, Eileen, welcome aboard! Congratulations on your baby--is this your first? It can be totally overwhelming even without health issues. Many new moms have a terrible time getting started on breastfeeding, mostly because the idiot doctors don't realize how often you REALLY need to nurse a new baby (no, it's not every 2-3 hours, unless you want your milk to dry up!)--is that going okay for you?

How were you diagnosed? Does the doctor who diagnosed you realize that there is a huge difference between being allergic to something and being intolerant? (But Arnetta is correct--both require a strict gluten-free diet.) What were all "the usual things" your doctor tested you for regarding your wobbliness and lack of balance?

This board is a wonderful source of information and support. I had an awful time figuring out exactly what celiac disease is, as I thought it involved an allergic response, too! I've learned so much from this board!

I'm very ignorant about your particular situation, but hopefully someone else will recognize your symptoms. The only person I know who had problems like that had MS--I hope that's not the case!

Keep us posted, and I hope you feel better very soon!

(Edit: there are lots of good recipes on the recipe board here, and if there's anything you want to eat that you don't have a gluten-free recipe for--ask! Someone here probably has already experimented and made it, and people here are really generous about posting recipes!)

dear fiddle-faddle,

thank you so much for your input. yes this is my first baby, it has been wonderful and overwhelming! i never expected motherhood to begin this way...with major health problems.

when i first went in to my naturopathic doctor we didn't know what was going on. i had facial distortion(half of my face looked swollen, kind of like bells palsy ). i walked completely wobbly. i couldn't write, my vision was kind of moving like i was dizzy. needed help walking. couldn't hold a fork to eat, and these scary panic attacks....and probably other little things too. but thank goodness ALL OF IT HAS CLEARED UP! my face is normal, i can write and type now, i'm no longer dizzy, i can hold a utensil. i can even drive now, i didn't feel safe before. my walking problems are so much better now too! though not 100% yet. any way before i told doctor i wanted her to test my blood for gluten allergy she was testing it for all kinds of things like anemia, thiroid, white/red blood cells. you know every single thing that was more routine. the gluten test came back and she said i was "very alergic to gluten" she never said gluten intolerant. i accidentally said that she told me to strictly eliminate it from my diet....it has been over 8 weeks....maybe it was the gluten!?

[eileen.e.wells]

Just in case it takes you as long as it took me to REALLY figure out the gluten-free diet--it took me a good 6-8 weeks to figure out that there is "hidden" gluten in unlikely places-- such as most brands of soy sauce,

"light" ice cream, some seasoning blends, and even the glue on envelopes!

i thought i was pretty keen to the "hidden" sources untill we went out for sushi last night. i knew enough to bring my own wheat-free tamari...instead of using their soy sauce. but thankfully, the nice waitress , new enough to tell me to avoid the sushi rice as well. the chef uses brown rice vinegar(which contains wheat). i was so bummed because i always get sushi rolls that have that sticky rice in them. turns out everything on the menu, almost, was off limits. i un-happily ordered tuna sashimi with a bowl of plain steamed rice.

thankyou fiddle-faddle

[Fiddle-Faddle]

I'm so glad that you are doing so well! (I hope you are getting some sleep, too!) Amzing what gluten can do, isn't it? I don't even have an official diagnosis, but I have no desire to go back to gluten at this point!

Brown rice vinegar contains WHEAT? Oh, man...

[brizzo]

hey,,,,did you get an epidural by the anesthesiologist during labor? Did it have no effect on you. Alot of times Doc's "accidently" feed the epidural into the spinal cord space. This could be the cause of some of your symptoms. A good way to tell if the epidural was in the epidural space is that it worked... If you noticed no numbing or pain killing effects during labor, then it was probably improperly placed and might have "bit" a nerve or two. Call your anesthesiologist, and possibly a neurologist if things don't get better..... b.

[eileen.e.wells]

hey,,,,did you get an epidural by the anesthesiologist during labor? Did it have no effect on you. Alot of times Doc's "accidently" feed the epidural into the spinal cord space. This could be the cause of some of your symptoms. A good way to tell if the epidural was in the epidural space is that it worked... If you noticed no numbing or pain killing effects during labor, then it was probably improperly placed and might have "bit" a nerve or two. Call your anesthesiologist, and possibly a neurologist if things don't get better..... b.

thank you for asking, but no i did not have a epidural...in fact a completely natural birth with no drugs or complications. thankfully!

eileen

[eileen.e.wells]

dear mike,

thank you so much for your story. i almost fell over when you said "first my feet were numb all the time." for about five months now, my feet have been numb! it happened when i recieved some stressful news, and it never went away. i have felt the numbness in other parts of my body too, but mostly my feet.

i would love to read about your celiac diagnosis if you post it somewhere. i love how those #@*! doctors say "that would be very unlikely"..... just like when i asked my doctor to test me for gluten alergy, she said "you don't have celiac cause you don't have dirreah". (please) and it turns out i don't have full blown celiac...just very alergic to gluten....but these symptoms are still possibly coming from a reaction to the gluten. the more responses i get from members of this site, the more i think i could be right. i am very lucky to have found the cause of my symptoms only after 5-6 months. you have been through sooo much.

i hope you have improved being gluten free!

eileen

[eileen.e.wells]

testing....testing