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Guest AutumnE

Permanent Gluten Damage

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The pain is in both my hands and feet. It gets pretty bad at times. It's not my only symptom, I have GI symptoms as well, and insomnia. Since going gluten free 2 months ago, I have seen some improvement in my GI issues, and I sleep like a rock. I'm starting to suspect that I might still be having other food issues, I need to try cutting corn and or dairy, but I'm having a hard time motivating to do so. Overall, I feel MUCH better, but far from 100%.

Unfortunately, I have seen no improvement in my hands and feet. If anything, some days I think it's worse. Perhaps I need to look into seeing an endochronologist and or trying B12 shots.

Geoff

Hi - bmw here, i've been to a Neurologist for the nerve damage, etc. and B6 is a no, no - but taking B12 is a good idea, i've found it at Trader Joes, but try online to find it in store near you. I've had no trouble with corn or dairy myself, but found cutting gluten entirely has helped, give it time (check your labels). Good luck! bmw

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Hi - bmw here, i've been to a Neurologist for the nerve damage, etc. and B6 is a no, no - but taking B12 is a good idea, i've found it at Trader Joes, but try online to find it in store near you. I've had no trouble with corn or dairy myself, but found cutting gluten entirely has helped, give it time (check your labels). Good luck! bmw

Why is B6 a no-no? I've been taking B complex vitamins.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

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Geoff--B6 isn't a no-no. Some doctors do not agree with taking it, some encourage it. You do have to be more careful with B6. I did take it for a while, I didn't see the improvement that my friend did.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Geoff--B6 isn't a no-no. Some doctors do not agree with taking it, some encourage it. You do have to be more careful with B6. I did take it for a while, I didn't see the improvement that my friend did.

Geoff,

in my case, B6 is a no-no because of the nerve damage can cause for people with pressure palsy (extra B6 in the system does not flush out of the body - extra B12 in the system is ok because it flushes out) my disorder is called HNPP (heritary nerve pressure palsy), brought on by gluten intolerance. More later, gotta go.

bmw

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Sorry BMW--I know nothing about nerve pressure palsy, I do know that B6 is very helpful for some neuropathies. And yes, you can take too much, so you must research it, yet it does help many. To begin with, most people with neuropathies do need additional B vitamins, not just B12, although it is the important one. Geoff, search neuropathy forums for your answers--Braintalk, Neurotalk--google "neuropathy forums" and see what you find.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I wonder if this is why my numbness and tingling has come back lately? I will get it if I have been glutened like on vacation or something and it will last a couple of months or so! But you know, I improved when I was taking a liquid B-Complex with mega doses in it, and I have been off of it for like a month because the HFS where I get it was out and it takes weeks for them to get it in..... :angry:

I should just order off the internet.

So I wonder if that is what is causing my recent issues. I also have muscle aches and weakness too. When I think about it, I realize my symptoms returned around the time I stopped taking the liquid B complex.........

Hmmmm.


KARINA

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I have been sick since I was seven and am now 30. I was diagnosed 3 years in January. I am very sensitive to wheat. It was not until a Dr. I worked for suggested I stop eating wheat. Sure enough I noticed the difference in the first week.All of my test have come back negative and were all done incorrectly. It has taken 3 years for me to feel healthy and not sick anymore. Stick to the lifestyle it is very changing. Its for the best.It does get better. Give your body time. Think about how long you could have possibly been sick.


"There is always a Brighter side to every situation"

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Karina--I get my liquid B from Puritan's Pride. We have an outlet center here and the vitamins are always Buy 1, get 2 free--so I pay $9.95 for 3 bottles. They have an online website too, but I do not think they have this same sale all the time. The B-Complex liquid has 1200mcg of B12 per dose and it is gluten free. Lame Advertisement.com is another good online vitamin company--they list gluten free on the label.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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You know what's wierd, is that my FIL gave me his liquid B from GNC since I was out of mine...and it does not have nearly all the B vitamins that my Liquid Health B's do...but it has lots more B 12 and I have been taking that faithfully everyday until I can get my regular Liquid Health again. The GNC has 1000mcgs in it of B12, so I have been getting more b12 than I usually do.....maybe for me, I need the bigger complex of the B's.......who knows.


KARINA

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One thing that hasn't completely resolved after a year and a half is the tingling on my face. It has gone away from my arm and legs, but the face persists--worse if glutened. Another is the itching--that comes and goes.

I still have some anxiety--it's gotten better, though.

Hey Jersey,

reading your post made me definitely sit up and take notice! I went to my dr. last june for slight numbness and tingling in my face. Only on the right side of my mouth. They did mri and found nothing and my dr. said oh well. It has been off and on and kinda freaks me out. Glad I am not alone. mp

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I do take a variety of vitamins. Is b12 offered in any other form besides shots?

Oh Yes, vit B comes in pill form, mostly as complex B.


Dx celiac sprue 06-06-06

Prometheus Labs in California, blood work

AGA IgG=negative AGA IgA=negative

TTG IgA=positive EMA IgA=positive

Endoscopy shows moderate to severe villa blunting

severe asthma, COPD

right Bundle Branch Block (heart conduction)

short PR interval (heart)

Arnold Chiari Malformation

Irritable Bowel Syndrome

Fibromyalgia, Myofascial pain syndrome

GERD

Osteoporosis, osteoarthritis

Severe claustrophobia

Gallbladder removed

When someone you love becomes a memory,

that memory becomes a treasure.

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Hello, I am writing to ask some questions for my husband as he doesn't use a computer. He is 67 years old and was diagnoised with celiac about ten years ago. He is now having joint problems and he needs a new hip. I am concerned about the surgery. Is hip replacement the same in a person if they have celiac or if they do not have celiac? Does the joint replacement heal the same way and is the recovery time the same?

I would like to find a doctor that has knowledge of both celiac and joint replacement.

Mariana

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Hello, I am writing to ask some questions for my husband as he doesn't use a computer. He is 67 years old and was diagnoised with celiac about ten years ago. He is now having joint problems and he needs a new hip. I am concerned about the surgery. Is hip replacement the same in a person if they have celiac or if they do not have celiac? Does the joint replacement heal the same way and is the recovery time the same?

I would like to find a doctor that has knowledge of both celiac and joint replacement.

Mariana

Mariana,

I can't help you with the question, but you might have better luck asking your question in a new thread.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

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Im still patiently waiting for my nerve and joint problems to get better or completely go away, I have been gluten free for almost 9 months.

I know my glaucoma will not go away but hopefully with my vitamin deficiencies going away and medication treatment I will stay at only 30% vision loss in my eye. Also I avoid all processed foods now so Im hopeful that will help also.

I've been gluten-free for 7 years, DF-6.5, Egg free, nightshade free and I still have way more pain than I thinks someone my age/condition should have. I'm working on things with the medical community right now, after a 10 year hiatus from prescribed fog from the meds. I'm currently weaning off Neurotin - another one that doesn't work for me. We'll see what the next experiment the neurologist and Gastro docs have for me. Bob

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Is there anything that helps with the itching. I have been Gluton free for almost two months and my body has been incredibly itchy. My legs are actually all sores and scratches right now because I scratch my legs in my sleep. ANd my back is sooooo itchy that it keeps me awake at night.

I still have awful joint and nerve pain. Usually by the end of the day, the bottom of my feet hurt so much it hurts to walk.


Its better to be hated for who you are than loved for who you are not.

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I find this all very interesting. After about 10 years gluten free I am at a stand still. My Dr. says this is as good as I am going to get. He said that I have a very rare case of Celiac. I have memory problems caused from it, my head never stops moving people always think I am saying no even with out talking. I now have a stutter, and I am in constant pain, which puts me in and out of a wheel chair. I am no longer able to work because of all the ill affects from when I first got sick. The Dr. says it is because we did not catch it soon enough. I also do not leave home alone as I tend to get lost at times.

But hey on the other side I am getting out of bed every day. I stay some what sane by joking about and laughing about my illness. My kids say they know no one else who has an actual bobble head for a Dad, lol

Ok so thats my story and I'm sticking with it, Still lol


Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming WOW-- What a Ride!

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Karina--I get my liquid B from Puritan's Pride.

I really apprciate your posts, as I am gluten-free and very slowly trying to recover from nerve damage. I'm looking into the B12...do you know for sure if the Puritan's Pride brand uses gluten in its flavoring or not? Did you have to ask the company?

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I know the BComplex with B12 in it is gluten-free. There is nothing in the ingredients to prove otherwise. I have been taking it for 2 years now and I did ask before using it. I did want to try their Woman +50 multi-vitamin, and they state it is gluten free, yet it contains barley grass and I will not try it. Always ask and read, read, read.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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For my husband

Things that cleared up due to gluten-free diet

1) no more gas, diarrhea, bloating, headaches, belly aches, noisy stomach,

2) less depression

3) clearer skin (DH)

Stayed the same:

1) developed neuropathy despite Vit B shots and supplements

2) devleoped a hemorrid type problem

3) no gain of weight (desperately needed it)

4) other food sensitivities that haven't gone away and/or can't be addressed

5) muscle wasting stopped but no gain in it

6) incomplete digestion and absorption of fruits and vegetables & other foods

7) vertigo episodes

8) worsened constipation due to diet (see #6 above for connecting reason)

Deb: as an aside, we stopped doing business with Puritan's because after several phone calls and two years they have not responded to my question about their ZINC being gluten free or not. I kept getting different answers from different employees who were Customer Service. I cannot trust them.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Hi, most of you might have picked this up on another thread here, though I'll just say it again in case. Lyme disease is notorious for causing neurological symptoms and can also be like celiac with many multiple system symptoms. It may be worth looking at other threads that discuss this.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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