Foot Pain Etc.

[Guest SusieQ]

Hi,

I joined just a couple weeks ago and put myself on a gluten free diet. I've suspected that I was gluten intolerant for a long time, but because of docs non-belief....to the point of yelling at me that she wasn't going to order thousands of dollars worth of test...I pretty much dropped it. I folded....and I know better.

I took some blood tests last summer, different doc, and was told it was inconclusive. The anti-gliadin tested barely positive and the others were negative.

Now I'm thinking that is really a big red flag. since starting the diet, my chronic problems with d. stopped.....bingo. Also, have gotten glutened a couple times and had immediate reaction with gas and D.

I have had a dx. of fibromyalgia for the past ten years. I don't usually eat much bread anyway, but I went on a trip to Japan in December and found that I went in to a terrible flare that lasted thru the whole trip. They eat a lot of soy sauce and oyster sauce in their foods and they both have wheat. After that I decided I just had to go on a gluten free diet. Some pain has been relieved, but I still have all of the tender points that fibromyalgia is known for. So, one question is,

1. if I really have gluten intolerance and not fibromyalgia, how long might it take to all go away.

Also, I am having trouble walking. Leg pain, foot pain, my balance has gotten terrible. Tried to talk with a doc about it before and i've always been dismissed. Told I didn't have peripheral neuropathy and that I just needed to lose weight. This weakness I have isn't caused by my weight. Although, yes, I need to lose weight....I just have done almost everything I could and couldn't get the weight down...

2. If I have gluten ataxia caused by nutrient deficiencies, how long might it take to see a difference in this. I know some nerve damage could be permanent. I just want to know when others saw a difference in this....so I'll have something positive to look forward to.

Both my father and his mother had difficulty walking in later years. I'm starting to remind myself of them. it is scary and I'm only 59. Well, the older I get, the younger it seems to me. : ) I'm beginning to wonder if they both had gluten ataxia and gluten intolerance.

3. Can the positive test for anti-glidin be enough for a dx? I think I'm going to spend the dollars and get the stool test and genetic testing. The other blood tests were negative. I was starting to have some itching and was beginning to get concerned about that, but it seems to have stopped for the most part.

4. If it is really gluten intolerance, how long before the fibromyalgia pain points go away?

5. How long before I mnight feel really rested? Another symptom for fibromyalgia too. I'd do almost anything to wake up feeling rested for a change.

I keep seeing where hepatitis C can be a side effect of this disease, but I don't understand why. It is a blood borne illness. No, I don't know how I got it. Had no risky behavior...never did illegal drugs etc. So I don't know. However, I did have HCV and am now negative after going on interferon and ribavarin for 6 months. I had hoped the fibro would go away once the hep did, but that didn't happen. I had convinced myself that the hep triggered the fibro. So, I had to go back and look for answers again.

6. Anyone have any idea why HCV would be a side effect of gluten intolerance since HCV is a blood borne disease? I don't understand it.

7. I have an appointment to see a doc. about a biopsy now. Any sense in doing that. I just don't want to go back on wheat in order to do the biopsy. although the fibro symptoms aren't all gone, at least it doesn't hurt as bad as it did! If I don't resume the gluten, would their be any sense in doing it anyway.

8. How long before the fogginess goes away? I think I can tell a little difference. I have visions of the gluten having eaten away parts of my brain so that I'll never have it back again. Somebody please tell me I'll get my memory back.... : (

9. I'm one of those folkes that can't seem to get weight off. I gained a lot since being dx. with fibro. ten years ago. How long, if this is the cause, before I'm able to start seeing a difference in my weight?

Any ideas at all?

I guess these are my main questions. I feel like an idiot that i didn't look in to this sooner, because I suspected their was a wheat connection. I just couldn't get any doctors to take me seriously on this.

I brought up the subject of gluten intolerance being something to look at on list that I belong to for fibromyalgia. I was pretty much told that I didn't belong their and that the two couldn't be connected. It must be nice to be totally confident in believing they know every possibility about an illness and are able to deny any other possibilities, and therefore they can throw in the towel and believe they can't do anything but suffer. I may become a real advocate for people with fibro to try giving up gluten.

Thanks to anyone for any help. I'm so pleased to have found this list. I feel like I found a home and really belong here.

[BB22]

It was the pain that kept sending me to doctors. It started in my feet & got so bad that I begged for a wheelchair. The pain spread and flashed everywhere. Before that it was the TMJ after that it was terrible migraines. Pain Pain Pain. Neurontin helped me walk again. Chemo helped & then everything got bad again. And the pain was now a dull roar & not a scream. I too had nerve condution tests. I've had one poisening since November. It was last weekend & I'm still paying for it.

I really think this is the answer for me. I do feel night and day different & I'm hoping it will continue to improve, because I still have some complaints, but am essentially pain FREE!!!!!!!!!!!!!!!!

bb22

[floridanative]

Others who can answer more of your questions will post soon I'm sure. But since you had a similar blood test to mine I thought I could as least help there. Only 1 of 6 blood test came back positive for me - the tTg which was only a 10. Then two months later another doc ran the same panel and the tTg came back a 7. He said I was fine but was a hemotologist, not GI. Went to another GI who said since my tTg number came down, I'm fine and there's nothing to be concerend about. I had to convince him to do the biopsy and had that on Jan. 11th. He called Monday to tell me I have damage throughout my small intestine (he took three samples).

I've only been off gluten for four days so I'm not knowledgeable enough to help you with the other questions. However, for about six months I have been running into door frames and corners of the counters and such. Then about a month ago I fell down my own stairs twice in a week. I tended to run down them so I stopped that. Also had dizzy spells that came out of nowhere and lasted maybe thirty minutes. Had to sit down until it went away. For now I can not worry about if my brain has been damaged It's enough just to turn my life upside down and start living gluten free. Plus I need a break from medical tests.

Oh and by the way, Celiac can cause weight gain but it's not talked about enough. Many Celiacs lose wt. just going on the gluten free diet.

Good luck to you and welcome. We're glad you're here!

[DonnaD]

Hi Susie,

Welcome you are SO in the right place

I also have Fibro and am 28lbs overweight. I didn't realise Fibro (and other neurological symptoms)are connected to celiac disease/gluten until my daughter was diagnosed and I found this wonderful board. I am 42 and the only time I remember being really well was 5 years ago when I 'Atkins' dieted very strictly no, grains, no carbs, freash fruit and veg only. At the time I didn't realise the significance of the restricted diet affecting my back/neck pain (which I have had for 16 years or so, my DX of Fibro was only 2 years ago. I too found Japan made me worse, I agree about the soy sauce with everything! I use Tamari which is wheat free at home.

I started a strict ellimination diet 3 weeks ago (I had been more or less gluten-free for 2 months but was still having some goat and soy products and red wine. Within 5 days my brain fog (8) and almost gone (I know how awful it is too feel that you are getting 'senior moments' and can't motivate yourself to do anything) and my energy, which I had thought was gone for good came back also some mental clarity at last. I also lost 5lb ! (mainly from my stomach) (9) A biopsy, and bloods could be 'false negative' if you are gluten free, I did Enterlolab (3) as I was not willing to make myself so ill again for 3 months or so. (7)

(4) My fibro pain subsided to about 3 on a scale of 1-10. it had been about 7. My IBS -C also finally cleared up. My Fiance said he had his 'old' girlfriend back at last! Even my irritable bladder improved. ----Everything came back yesterday after eating at the airport in France so I suspect I was 'gluted' or 'milked!' So I have gone back to bed until I feel better.

I normally do 1/2 hour of exercise every day and this really helps the insomnia (5) (otherwise I wake up at 3am exhausted and can't get back to sleep) and the background fibro pain and also my creaking knees and ability to climb stairs. So I plan to get back on the diet and the treadmill tomorrow! I was told by a holistic dietition that exercise flushes out the lymphatic system of toxins I quicly feel yukky when I don't do any.

I am waiting for the results of my bone scan, I also have a dowagers hump on my back.

I hope that this is of some help, you are certainly not alone, I am still learning myself!

Donna

[Guest SusieQ]

It was the pain that kept sending me to doctors. It started in my feet & got so bad that I begged for a wheelchair. The pain spread and flashed everywhere. Before that it was the TMJ after that it was terrible migraines. Pain Pain Pain. Neurontin helped me walk again. Chemo helped & then everything got bad again. And the pain was now a dull roar & not a scream. I too had nerve condution tests. I've had one poisening since November. It was last weekend & I'm still paying for it.

I really think this is the answer for me. I do feel night and day different & I'm hoping it will continue to improve, because I still have some complaints, but am essentially pain FREE!!!!!!!!!!!!!!!!

bb22

Dear bb22,

How reasurring to hear that you were practically in a wheel chair and now you are essentially pain free and this change has taken place just since November. I'll set my sight on having, hopefully, major improvement in three months. That will give me something to look forward to.

I'm beginning to think that my son-in-law has the same problem. Only 32 and he is much worse then I am. Hasn't been able to work much in years. Stumbles when he walks, falls down a lot. They haven't been able to come up with a dx for him either. Only thing is that he has been gluten free for a couple weeks and has not noted any changes at all. Went gluten free by my urging to give it a try.

Thanks so much for taking your time to respond to me. What a thrill it must be to have a new lease on life.

Others who can answer more of your questions will post soon I'm sure. But since you had a similar blood test to mine I thought I could as least help there. Only 1 of 6 blood test came back positive for me - the tTg which was only a 10. Then two months later another doc ran the same panel and the tTg came back a 7. He said I was fine but was a hemotologist, not GI. Went to another GI who said since my tTg number came down, I'm fine and there's nothing to be concerend about. I had to convince him to do the biopsy and had that on Jan. 11th. He called Monday to tell me I have damage throughout my small intestine (he took three samples).

I've only been off gluten for four days so I'm not knowledgeable enough to help you with the other questions. However, for about six months I have been running into door frames and corners of the counters and such. Then about a month ago I fell down my own stairs twice in a week. I tended to run down them so I stopped that. Also had dizzy spells that came out of nowhere and lasted maybe thirty minutes. Had to sit down until it went away. For now I can not worry about if my brain has been damaged It's enough just to turn my life upside down and start living gluten free. Plus I need a break from medical tests.

Oh and by the way, Celiac can cause weight gain but it's not talked about enough. Many Celiacs lose wt. just going on the gluten free diet.

Good luck to you and welcome. We're glad you're here!

[Guest SusieQ]

Others who can answer more of your questions will post soon I'm sure. But since you had a similar blood test to mine I thought I could as least help there. Only 1 of 6 blood test came back positive for me - the tTg which was only a 10. Then two months later another doc ran the same panel and the tTg came back a 7. He said I was fine but was a hemotologist, not GI. Went to another GI who said since my tTg number came down, I'm fine and there's nothing to be concerend about. I had to convince him to do the biopsy and had that on Jan. 11th. He called Monday to tell me I have damage throughout my small intestine (he took three samples).

I've only been off gluten for four days so I'm not knowledgeable enough to help you with the other questions. However, for about six months I have been running into door frames and corners of the counters and such. Then about a month ago I fell down my own stairs twice in a week. I tended to run down them so I stopped that. Also had dizzy spells that came out of nowhere and lasted maybe thirty minutes. Had to sit down until it went away. For now I can not worry about if my brain has been damaged It's enough just to turn my life upside down and start living gluten free. Plus I need a break from medical tests.

Oh and by the way, Celiac can cause weight gain but it's not talked about enough. Many Celiacs lose wt. just going on the gluten free diet.

Good luck to you and welcome. We're glad you're here!

Hello Floridanative,

Thanks for the thoughts. I don't think I had the tTga test. I think I'm going to go back and get the whole spectrum of tests that people keep tlking ab out. I'll ask about the tTga too. Sounds like it wouldn't hurt for me to keep the appointment with the surgeon either.

Thanks

Hi Susie,

Welcome you are SO in the right place

I also have Fibro and am 28lbs overweight. I didn't realise Fibro (and other neurological symptoms)are connected to celiac disease/gluten until my daughter was diagnosed and I found this wonderful board. I am 42 and the only time I remember being really well was 5 years ago when I 'Atkins' dieted very strictly no, grains, no carbs, freash fruit and veg only. At the time I didn't realise the significance of the restricted diet affecting my back/neck pain (which I have had for 16 years or so, my DX of Fibro was only 2 years ago. I too found Japan made me worse, I agree about the soy sauce with everything! I use Tamari which is wheat free at home.

I started a strict ellimination diet 3 weeks ago (I had been more or less gluten-free for 2 months but was still having some goat and soy products and red wine. Within 5 days my brain fog (8) and almost gone (I know how awful it is too feel that you are getting 'senior moments' and can't motivate yourself to do anything) and my energy, which I had thought was gone for good came back also some mental clarity at last. I also lost 5lb ! (mainly from my stomach) (9) A biopsy, and bloods could be 'false negative' if you are gluten free, I did Enterlolab (3) as I was not willing to make myself so ill again for 3 months or so. (7)

(4) My fibro pain subsided to about 3 on a scale of 1-10. it had been about 7. My IBS -C also finally cleared up. My Fiance said he had his 'old' girlfriend back at last! Even my irritable bladder improved. ----Everything came back yesterday after eating at the airport in France so I suspect I was 'gluted' or 'milked!' So I have gone back to bed until I feel better.

I normally do 1/2 hour of exercise every day and this really helps the insomnia (5) (otherwise I wake up at 3am exhausted and can't get back to sleep) and the background fibro pain and also my creaking knees and ability to climb stairs. So I plan to get back on the diet and the treadmill tomorrow! I was told by a holistic dietition that exercise flushes out the lymphatic system of toxins I quicly feel yukky when I don't do any.

I am waiting for the results of my bone scan, I also have a dowagers hump on my back.

I hope that this is of some help, you are certainly not alone, I am still learning myself!

Donna

Hi Susie,

Welcome you are SO in the right place

I also have Fibro and am 28lbs overweight. I didn't realise Fibro (and other neurological symptoms)are connected to celiac disease/gluten until my daughter was diagnosed and I found this wonderful board. I am 42 and the only time I remember being really well was 5 years ago when I 'Atkins' dieted very strictly no, grains, no carbs, freash fruit and veg only. At the time I didn't realise the significance of the restricted diet affecting my back/neck pain (which I have had for 16 years or so, my DX of Fibro was only 2 years ago. I too found Japan made me worse, I agree about the soy sauce with everything! I use Tamari which is wheat free at home.

I started a strict ellimination diet 3 weeks ago (I had been more or less gluten-free for 2 months but was still having some goat and soy products and red wine. Within 5 days my brain fog (8) and almost gone (I know how awful it is too feel that you are getting 'senior moments' and can't motivate yourself to do anything) and my energy, which I had thought was gone for good came back also some mental clarity at last. I also lost 5lb ! (mainly from my stomach) (9) A biopsy, and bloods could be 'false negative' if you are gluten free, I did Enterlolab (3) as I was not willing to make myself so ill again for 3 months or so. (7)

(4) My fibro pain subsided to about 3 on a scale of 1-10. it had been about 7. My IBS -C also finally cleared up. My Fiance said he had his 'old' girlfriend back at last! Even my irritable bladder improved. ----Everything came back yesterday after eating at the airport in France so I suspect I was 'gluted' or 'milked!' So I have gone back to bed until I feel better.

I normally do 1/2 hour of exercise every day and this really helps the insomnia (5) (otherwise I wake up at 3am exhausted and can't get back to sleep) and the background fibro pain and also my creaking knees and ability to climb stairs. So I plan to get back on the diet and the treadmill tomorrow! I was told by a holistic dietition that exercise flushes out the lymphatic system of toxins I quicly feel yukky when I don't do any.

I am waiting for the results of my bone scan, I also have a dowagers hump on my back.

I hope that this is of some help, you are certainly not alone, I am still learning myself!

Donna

Hi Susie,

Welcome you are SO in the right place

I also have Fibro and am 28lbs overweight. I didn't realise Fibro (and other neurological symptoms)are connected to celiac disease/gluten until my daughter was diagnosed and I found this wonderful board. I am 42 and the only time I remember being really well was 5 years ago when I 'Atkins' dieted very strictly no, grains, no carbs, freash fruit and veg only. At the time I didn't realise the significance of the restricted diet affecting my back/neck pain (which I have had for 16 years or so, my DX of Fibro was only 2 years ago. I too found Japan made me worse, I agree about the soy sauce with everything! I use Tamari which is wheat free at home.

I started a strict ellimination diet 3 weeks ago (I had been more or less gluten-free for 2 months but was still having some goat and soy products and red wine. Within 5 days my brain fog (8) and almost gone (I know how awful it is too feel that you are getting 'senior moments' and can't motivate yourself to do anything) and my energy, which I had thought was gone for good came back also some mental clarity at last. I also lost 5lb ! (mainly from my stomach) (9) A biopsy, and bloods could be 'false negative' if you are gluten free, I did Enterlolab (3) as I was not willing to make myself so ill again for 3 months or so. (7)

(4) My fibro pain subsided to about 3 on a scale of 1-10. it had been about 7. My IBS -C also finally cleared up. My Fiance said he had his 'old' girlfriend back at last! Even my irritable bladder improved. ----Everything came back yesterday after eating at the airport in France so I suspect I was 'gluted' or 'milked!' So I have gone back to bed until I feel better.

I normally do 1/2 hour of exercise every day and this really helps the insomnia (5) (otherwise I wake up at 3am exhausted and can't get back to sleep) and the background fibro pain and also my creaking knees and ability to climb stairs. So I plan to get back on the diet and the treadmill tomorrow! I was told by a holistic dietition that exercise flushes out the lymphatic system of toxins I quicly feel yukky when I don't do any.

I am waiting for the results of my bone scan, I also have a dowagers hump on my back.

I hope that this is of some help, you are certainly not alone, I am still learning myself!

Donna