Peripheal Neuropathy

[Calle]

Hi Everyone,

Can anyone out there tell me if they also suffer from peripheal neuropathy along with having celiac disease? My father has suffered from peripheal neuropathy for the past 30 years and it's from unknown origins. He does not have diabetes. His mother had it, his brother and sister have it along with his sister being diagnosed with IBS. Now my second oldest brother is showing symptoms of it. I don't have it, but was diagnosed through the Enterolab for Celiac. I am just wondering if this isn't all linked through my family. I just find it so strange that so many people in my family are getting peripheal neuropathy.

Thanks,

Calle

[gf4life]

Peripheral Neuropathy is a common symptom of Celiac Disease. Since it is so prevalent in the family and some have had GI issues, then being screened for Celiac Disease is not a bad idea.

[Ursa Major]

Hi Everyone,

Can anyone out there tell me if they also suffer from peripheal neuropathy along with having celiac disease? My father has suffered from peripheal neuropathy for the past 30 years and it's from unknown origins. He does not have diabetes. His mother had it, his brother and sister have it along with his sister being diagnosed with IBS. Now my second oldest brother is showing symptoms of it. I don't have it, but was diagnosed through the Enterolab for Celiac. I am just wondering if this isn't all linked through my family. I just find it so strange that so many people in my family are getting peripheral neuropathy.

Thanks,

Calle

I guess it is slow here around lunch time. There are quite a few people here who have peripheral neuropathy, which has improved on the gluten-free diet. If people had it for a long time, it may not get completely better, and progress is slow.

IBS is not a real diagnosis, even if doctors would like you to think that. All it means is, that something is wrong with your bowels, and the doctor doesn't have a clue why and is too lazy or clueless to find out. A lot of people with celiac disease are first given a label of IBS, when celiac disease was the cause of their problems all along.

It looks to me like celiac disease is running in your family, and peripheral neuropathy is the main symptom of most of your family members.

I doubt that your father could still recover fully, but there is a good chance that he would improve on the gluten-free diet. Your brother might recover all the way if he gives up gluten.

[alamaz]

I had cripling PN prior to my diagnosis. Mine was also unexplained and no doctor ever thought it was strange that a 24 year old girl had horrible pains in her hands and arms. Literally, my husband has had to do the dishes every night almost because I don't have the hand strength at the end of the day to hold the heavy pots to wash them (yes, many think this is my way of getting out of doing the dishes). Also, I had to start drinking out of straws because I couldn't hold a glass to drink from it. At one point I was considering disability because I couldn't find a job that didn't entail being at a computer/using my hands all day. BUT I have to say that after only 3.5 months on the diet my hands are soooooooooo much better (still not better enough to do those dishes yet of course ). I still have my days where they flare up and I'm slowly tracking that back to OTHER things I eat (like a whole bag of potato chips ) I am also mega dosing on the fish oil to help with the inflammation. For sure have your family tested for celiac disease. If they catch it early enough the neuropathy can be improved and or eliminated all together.

[Ursa Major]

Alamaz, your post was an eye opener for me, I almost forgot that I used to have so little strength in my hands at times (it would come and go) that I was unable to hold a cup with one hand, and had to use both hands! I also couldn't pour things or do dishes. I guess I used to have PN as well without knowing it! It is completely gone now, 20 months after starting the diet.

[tom]

I agree w/ all of that. My PN is nearly completely gone after gluten-free diet.

The remaining occasional symptoms are so minor I can't positively say it even IS PN!

It's on this list, along w/ many other assoc problems.

Definite

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

Probable

https://www.celiac.com/st_prod.html?p_prodi...-15104373588.a8

[georgie]

PN is also a symptom of low B12 which can be associated with Celiac. After my B12 shots my PN gets better within an hour, and returns when the next injection is due. The neuro symptoms of low B12 can start when your blood test gets below 400. Many Drs don't treat the deficiency until it falls below 200 or even 100 here in Australia. A normal B12 result is around 1000 or more.

[debmidge]

My husband's PN does not feel much better after his monthly B shot (he does take it sublingually too) so it appears that it's here to stay....

[lmvrbaby]

I have to say thank you Tom for the lists. I checked those over and had gall bladder disease, migraines and PN. During testing for gall bladder disease I was diagnosed with Celiac. Had no other symptoms what so ever. That was after biopsy and comfirmed blood test. Gall bladder out, gluten free diet, and no more migraines, I felt better. Still tired but better. Then a few months later, I started with PN. I have back problems, due to an on the job injury, and that is what is causing this PN. Those sypmtoms I had were all on the probably list.

Now my son was diagnosed with Diabetes type 1 at age 16 and then 4 years later diagnosed with Celiac. He didn't have nor does he still have any symptoms. It is just weird how some can be affected in so many ways and then others may not even know it. I have read several articles that say 1 out of 133 people have this and may not know it. My son and I were on the "May not know it list" til something else was diagnosed.

Just thought I would throw that out there.

[georgie]

My husband's PN does not feel much better after his monthly B shot (he does take it sublingually too) so it appears that it's here to stay....

Did he ever have a Loading Dose ? Alternate days for a week, then weekly for 8 weeks, then monthly ? Perhaps he needs weekly shots. Some at the Pernicious Anaemia Society are still on weekly shots after 2 years for their PN symptoms. Whatever your body needs, and sounds like he hasn't had enough. The Medical books clearly state that B12 shots should be given as often as needed if PN is present. Is it cyano or hydroxo he uses ? And many say the sublinguals don't do a thing to help them.

[kbabe1968]

For me...the painful skin sensations - it used to hurt to have even my kids touch me or wear clothes. I only get these symptoms as part of a reaction to being glutened now.

I STILL have the tingling sharp shooting pain in my feet in the morning, but when I walk around a bit, they get better. I used to have to wait about 30 minutes before being able to get out of bed, now I can get up and walk right away. That is a major improvement in my book.

Good luck to you.

[TrillumHunter]

PN was my presenting symptom 13 years ago. It was a searing electrical type pain coupled with weakness. I told the dr it was like I could shoot electricity out of two of my fingers. When they finally checked my b12 six years into it it was superlow. I took shots once a week for awhile to build it up and I take one once a month now. If I am delayed with shot I get symptoms again but not as severe.

[alamaz]

I've also added a B6 vitamin into my line of supplements (Multi, B6, B12, Cal/Mag, Folic Acid). If you read the excerpt on Mayo Clinic you can see it's just as important to get enough B6 as well Open Original Shared Link

I had been to so many specialists over my PN and for it to be something as "simple" as celiac disease floored me. If one doctor five years ago would have said "PN in a 24 year old is not right, let's really look into this" instead of telling me it was carpal tunnel, MS, or RA....boy I'd love to sue all those incompetent fools

Ursa- no one in my family believe me when I said I couldn't hold a pot or pan. When we had sphagetti or a stir fry I had to have my husband finish making dinner because I couldn't lift the pans. I still have trouble with the really heavy stuff and opening new jars (the twisting motion kills me) but I'm encouraged to hear that the longer you were on the diet the better your hands got!

[georgie]

I took shots once a week for awhile to build it up and I take one once a month now. If I am delayed with shot I get symptoms again but not as severe.

Can you remember how many weeks of weekly shots it took to build up the reserve , and that you could go to monthly ?

[debmidge]

Did he ever have a Loading Dose ? Alternate days for a week, then weekly for 8 weeks, then monthly ? Perhaps he needs weekly shots. Some at the Pernicious Anaemia Society are still on weekly shots after 2 years for their PN symptoms. Whatever your body needs, and sounds like he hasn't had enough. The Medical books clearly state that B12 shots should be given as often as needed if PN is present. Is it cyano or hydroxo he uses ? And many say the sublinguals don't do a thing to help them.

This is gonna sound stupid, but we are lucky he's getting this much (once a month)...his PCP/internest ran a blood test on him and said that he didnt need any shots because his blood levels for (?) was in normal range. So my husband casually mentioned to my PCP that he got shots from his PCP (no, not really) and my PCP agreed to give him a monthly shot. I'd like him to be able to give himself shot each week, but the PCP won't let him have prescription for this...and if he asks for one shot every week they'll probably run the blood test again and say that his levels are in normal range. I told him what you said and my husband is now being stubborn saying that they probably won't give it to him that often. I don't know cyano or hydroxo.....

How can I find copy of the info that states that B12 shots should be given as often as needed if PN is prsent? and but what if the blood test is normal? I'd love to prove to doctors & husband that there's need for more often shots...

[TrillumHunter]

I took shots once a week for six weeks. The thing is you can have a normal serum b12 but no reserve. If you stop the b12 (in whatever form) your serum levels drop pretty quickly. To prove this you can stop the b12 for a while and then have a serum test. My understanding is the liver should store a five year reserve in a healthy person. I don't know if I believe if my liver can store b12 anymore because despite monthly shots my serum levels are still only mid level normal. You would think they would be through the roof, right? And the normal range is REALLY broad like 400-1200 I think.

I'm sorry for the dr trouble. Most of us know what it's like sadly.

Alamaz--I'm with you on the whole "if anyone had ever bothered to think beyond...." Somedays I mentally compose a scathing letter that would put them in their place. But it always turns in to a crazy b*tchfest!

[georgie]

How can I find copy of the info that states that B12 shots should be given as often as needed if PN is prsent? and but what if the blood test is normal? I'd love to prove to doctors & husband that there's need for more often shots...

I have ordered Sally Pocholak's book - Could it be B12 - and she has written that in cojunction with a Dr. And she says she has many pages of references in it. I don't know how you can change your Drs thinking. Can you threaten the risk of a malpractice action if he is later found to be wrong? Once B12 gets too low it can cause neuro symptoms. Once those symptoms start - it may be too late to reverse them. Is your Dr prepared to take that risk with you? In Japan the range is set to be 500 and above. Can you find that as evidence for him? Ask him why he is not treating you - when in Japan the range is set so high ( and they have very few alziemers cases)

I guess you can change Drs ...

[georgie]

This is the data sheet for Neo Cytamen 9 hydroxo) which is the official and only Australian B12 treatment. Notice it says this.

For Addisonian pernicious anaemia and most other types of vitamin B12 deficiency anaemia, providing your nervous system is not affected, the usual dose is 250

[georgie]

And this is from the Pernicious Anaemia Society.

If you have neurological involvement then the BNF=Official UK BNF

(British National Formulary) guidelines for GP's to follow is:

In the UK, recommended doses for pernicious anaemia and other

macrocytic anaemias without neurological involvement are

hydroxocobalamin (or cyanocobalamin) 250 to 1000 micrograms

intramuscularly on alternate days for 1 to 2 weeks, then 250

micrograms weekly until the blood count returns to normal. Maintenance

doses of 1000 micrograms of hydroxocobalamin are given every 2 to 3

months (or monthly for cyanocobalamin). If there is neurological

involvement, hydroxocobalamin or cyanocobalamin may be given in doses

of 1000 micrograms on alternate days and continued for as long as

improvement occurs.