Hi @barbbielor, I don't have celiac disease but have read that neuropathy is common with folks having celiac disease. While you wait for other members to respond, I thought I would share this information on the topic.
"Peripheral neuropathy actually is one of the most common non-digestive symptoms of celiac disease. 3 In fact, it's possible to have no noticeable gastrointestinal symptoms of celiac disease, but instead to have mainly peripheral neuropathy and other neurological symptoms."
--- Gluten Neuropathy Pain: Symptoms and Impact of Diet: https://www.verywellhealth.com/gluten-and-neuropathy-562315
Have you made changes to your diet to help with Celiac disease?
I have been on a gluten free lactose free diet for years. I make my own food. Eat a lot of rice cakes instead of bread. Use gluten-free pasta. Eat canned tuna fish and canned chicken, salmon, little beef, baked chicken and lots of green salads. It's very difficult to eat out as many places just feel wheat free is gluten free or they may have gluten-free products coated with cheese!
I have had Coeliac Disease for 26 years then last year developed idiopathic neuropathy. SFN to start. I had read the 2 were connected. It’s a bitch anyway.
Yes I have Celiac Disease and have idiopathic neuropathy made worse from multiple surgeries i believe. No doctor will give me any reason for this nightmare condition. We have to research and doctor ourselves
Yes I was diagnosed with celiac about 15 years ago. I make sure that I am totally gluten-free.I had a skin biopsy about three years ago and was diagnosed with SFN.
I get pain and numbness in my legs, hands and hip from it. I make sure I do as much exercise as I can and I am on low-dose Naltrexone which helps a little.
Yes I was diagnosed with celiac about 15 years ago. I make sure that I am totally gluten-free.I had a skin biopsy about three years ago and was diagnosed with SFN.
I get pain and numbness in my legs, hands and hip from it. I make sure I do as much exercise as I can and I am on low-dose Naltrexone which helps a little.
Welcome Darla @darla1958, Thanks for sharing your experience. Diet and exercise certainly plays a big part in a lot of conditions including neuropathy and helping us live the best we can with the condition. If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of helpful information - https://www.foundationforpn.org/living-well/.
Hi @barbbielor, I don't have celiac disease but have read that neuropathy is common with folks having celiac disease. While you wait for other members to respond, I thought I would share this information on the topic.
"Peripheral neuropathy actually is one of the most common non-digestive symptoms of celiac disease. 3 In fact, it's possible to have no noticeable gastrointestinal symptoms of celiac disease, but instead to have mainly peripheral neuropathy and other neurological symptoms."
--- Gluten Neuropathy Pain: Symptoms and Impact of Diet: https://www.verywellhealth.com/gluten-and-neuropathy-562315
Have you made changes to your diet to help with Celiac disease?
@johnbishop All these years dx with celiac and I have never been told about PAD being related nor has any doctor talked to me about celiac. I discovered it by having genetic testing done. I also have many allergies to medical products. Is that typical?
@johnbishop All these years dx with celiac and I have never been told about PAD being related nor has any doctor talked to me about celiac. I discovered it by having genetic testing done. I also have many allergies to medical products. Is that typical?
@barbbielor Not sure if it's typical but did a search and found some information but it doesn't really provide a clear yes or no answer for me.
"Predominant antibody deficiency (PAD) is associated with non-infectious inflammatory gastrointestinal (GI) disease. Population estimates of celiac disease (CeD) risk in those with PAD are limited."
-- Predominant Antibody Deficiency and the Association with Celiac Disease in Sweden: A Nationwide Case-Control Study: https://www.jacionline.org/article/S0091-6749(23)02125-5/fulltext
@barbbielor Not sure if it's typical but did a search and found some information but it doesn't really provide a clear yes or no answer for me.
"Predominant antibody deficiency (PAD) is associated with non-infectious inflammatory gastrointestinal (GI) disease. Population estimates of celiac disease (CeD) risk in those with PAD are limited."
-- Predominant Antibody Deficiency and the Association with Celiac Disease in Sweden: A Nationwide Case-Control Study: https://www.jacionline.org/article/S0091-6749(23)02125-5/fulltext
@barbbielor Sorry about the confusion on my part. I have idiopathic small fiber PN and lymphedema in both legs and have wondered about peripheral artery disease myself. Still not sure if it's typical for neuropathy patients but I think I've seen that males with celiac disease are a higher risk for cardiovascular diseases.
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Hi @barbbielor, I don't have celiac disease but have read that neuropathy is common with folks having celiac disease. While you wait for other members to respond, I thought I would share this information on the topic.
"Peripheral neuropathy actually is one of the most common non-digestive symptoms of celiac disease. 3 In fact, it's possible to have no noticeable gastrointestinal symptoms of celiac disease, but instead to have mainly peripheral neuropathy and other neurological symptoms."
--- Gluten Neuropathy Pain: Symptoms and Impact of Diet: https://www.verywellhealth.com/gluten-and-neuropathy-562315
Have you made changes to your diet to help with Celiac disease?
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2 ReactionsI have been on a gluten free lactose free diet for years. I make my own food. Eat a lot of rice cakes instead of bread. Use gluten-free pasta. Eat canned tuna fish and canned chicken, salmon, little beef, baked chicken and lots of green salads. It's very difficult to eat out as many places just feel wheat free is gluten free or they may have gluten-free products coated with cheese!
-
Like -
Helpful -
Hug
2 ReactionsI have had Coeliac Disease for 26 years then last year developed idiopathic neuropathy. SFN to start. I had read the 2 were connected. It’s a bitch anyway.
-
Like -
Helpful -
Hug
1 ReactionYes I have Celiac Disease and have idiopathic neuropathy made worse from multiple surgeries i believe. No doctor will give me any reason for this nightmare condition. We have to research and doctor ourselves
Yes I was diagnosed with celiac about 15 years ago. I make sure that I am totally gluten-free.I had a skin biopsy about three years ago and was diagnosed with SFN.
I get pain and numbness in my legs, hands and hip from it. I make sure I do as much exercise as I can and I am on low-dose Naltrexone which helps a little.
-
Like -
Helpful -
Hug
1 ReactionWelcome Darla @darla1958, Thanks for sharing your experience. Diet and exercise certainly plays a big part in a lot of conditions including neuropathy and helping us live the best we can with the condition. If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of helpful information - https://www.foundationforpn.org/living-well/.
@johnbishop All these years dx with celiac and I have never been told about PAD being related nor has any doctor talked to me about celiac. I discovered it by having genetic testing done. I also have many allergies to medical products. Is that typical?
-
Like -
Helpful -
Hug
1 Reaction@barbbielor Not sure if it's typical but did a search and found some information but it doesn't really provide a clear yes or no answer for me.
"Predominant antibody deficiency (PAD) is associated with non-infectious inflammatory gastrointestinal (GI) disease. Population estimates of celiac disease (CeD) risk in those with PAD are limited."
-- Predominant Antibody Deficiency and the Association with Celiac Disease in Sweden: A Nationwide Case-Control Study: https://www.jacionline.org/article/S0091-6749(23)02125-5/fulltext
@johnbishop For PAD I was referring to peripheral artery disease.
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1 Reaction@barbbielor Sorry about the confusion on my part. I have idiopathic small fiber PN and lymphedema in both legs and have wondered about peripheral artery disease myself. Still not sure if it's typical for neuropathy patients but I think I've seen that males with celiac disease are a higher risk for cardiovascular diseases.