Neuropathy and Celiac

[areed]

An hour or so ago I had a pretty brutal panic attack. I only just found out I was diagnosed with CeD. After getting my diagnosis, I did a lot of research. I am a biology major and so the scientific logic behind the disease has been very fascinating to me. One of the things that shed a lot of light into my personal life is the connection between neuropathy and Celiac disease. I have had pretty bad anxiety and depression for a few years now. I wasn't that set off because I definitely had a predisposition, coming from a family riddled with depression, borderline personality disorder, bipolar disorder, etc. 

The first couple weeks I started following my gluten free diet I saw some major progress. I actually felt happy, motivated, clear. I am a college student, so doing tests and homework with brain fog and fatigue is next to impossible. The past couple weeks, for whatever reason, all of my symptoms have come back. I have checked my cabinets two, three times over. I have checked cosmetics and made my partner pack a toothbrush in case he eats something with gluten. I have done my research, I have done seemingly everything in my power. And yet the symptoms are back, leading to a very scary panic attack. The feeling of dissociation, that I'm dying. The feeling of "I don't want to live my life if this is what it is going to be like." I remember seeing somewhere that the quality of life for people with Celiac is lower than a majority of diet related diseases. Now I understand why. 

I want to know if anyone else struggles with these mental ailments. My confusion now stems from the possibility that I already had these neurological disorders and CeD just exacerbates them. If that is the case, how do we tell the difference between a normal neurological response and a gluten inflicted one. I just want to go back to the week I felt healthy. Knowing that I can feel that way makes me excited. I just can't keep living this way and I'm not sure when I can get to a point where things will finally be normal. 

[Russ H]

Hello areed,

It is very common for sufferers of coeliac disease to have neurological signs and symptoms. From my reading, the aetiology is not well understood but stems from 2 causes: immunological and deficiency of essential nutrients. The brain is rich in tissue transglutaminase and makes a target for anti-ttg antibodies. In addition, coeliac sufferers have often been chronically malnourished. B-vitamins particularly are vital for normal brain function. Chronic folate deficiency e.g. is implicated in calcification of the brain arteries, a less complication sequala of coeliac disease.

I was diagnosed last summer but it took me a while to get to grips with a strict gluten free diet. Previously, I was experiencing memory problems, difficulty concentrating, confusion, anxiety and paranoia. These symptoms have largely gone. Over the last couple of months, I have been supplementing with multivitamin and minerals, I take 300% RDA. After 6 months, I plan to drop to 200%, and at 12 months drop to 100%. I think nutrient deficiency is a significant component of neurological symptoms. It takes up to 2 years for the gut to fully heal when following a strict gluten free diet.

I feel extremely well at the moment, the best I have felt for decades. I don't know how much is due to falling antibodies and how much due to correcting nutrient deficiencies. Stick at it, I am sure you will feel much better but it takes time.

Russ

[Sabaarya]

9 hours ago, Russ314 said:

Hello areed,

It is very common for sufferers of coeliac disease to have neurological signs and symptoms. From my reading, the aetiology is not well understood but stems from 2 causes: immunological and deficiency of essential nutrients. The brain is rich in tissue transglutaminase and makes a target for anti-ttg antibodies. In addition, coeliac sufferers have often been chronically malnourished. B-vitamins particularly are vital for normal brain function. Chronic folate deficiency e.g. is implicated in calcification of the brain arteries, a less complication sequala of coeliac disease.

I was diagnosed last summer but it took me a while to get to grips with a strict gluten free diet. Previously, I was experiencing memory problems, difficulty concentrating, confusion, anxiety and paranoia. These symptoms have largely gone. Over the last couple of months, I have been supplementing with multivitamin and minerals, I take 300% RDA. After 6 months, I plan to drop to 200%, and at 12 months drop to 100%. I think nutrient deficiency is a significant component of neurological symptoms. It takes up to 2 years for the gut to fully heal when following a strict gluten free diet.

I feel extremely well at the moment, the best I have felt for decades. I don't know how much is due to falling antibodies and how much due to correcting nutrient deficiencies. Stick at it, I am sure you will feel much better but it takes time.

Russ

Hi Russ, I was diagnosed at the end of august 2021 but still experiencing ups and downs and started gluten-free diet 7 months ago. Somehow 3 months after diet I started to feel very well, but then again back pain,achy body,feet,ear pressure. I also do take antidepressants.When did you get diagnosed?

[Sabaarya]

On 5/4/2022 at 8:15 PM, areed said:

An hour or so ago I had a pretty brutal panic attack. I only just found out I was diagnosed with CeD. After getting my diagnosis, I did a lot of research. I am a biology major and so the scientific logic behind the disease has been very fascinating to me. One of the things that shed a lot of light into my personal life is the connection between neuropathy and Celiac disease. I have had pretty bad anxiety and depression for a few years now. I wasn't that set off because I definitely had a predisposition, coming from a family riddled with depression, borderline personality disorder, bipolar disorder, etc. 

The first couple weeks I started following my gluten free diet I saw some major progress. I actually felt happy, motivated, clear. I am a college student, so doing tests and homework with brain fog and fatigue is next to impossible. The past couple weeks, for whatever reason, all of my symptoms have come back. I have checked my cabinets two, three times over. I have checked cosmetics and made my partner pack a toothbrush in case he eats something with gluten. I have done my research, I have done seemingly everything in my power. And yet the symptoms are back, leading to a very scary panic attack. The feeling of dissociation, that I'm dying. The feeling of "I don't want to live my life if this is what it is going to be like." I remember seeing somewhere that the quality of life for people with Celiac is lower than a majority of diet related diseases. Now I understand why. 

I want to know if anyone else struggles with these mental ailments. My confusion now stems from the possibility that I already had these neurological disorders and CeD just exacerbates them. If that is the case, how do we tell the difference between a normal neurological response and a gluten inflicted one. I just want to go back to the week I felt healthy. Knowing that I can feel that way makes me excited. I just can't keep living this way and I'm not sure when I can get to a point where things will finally be normal. 

I have been anxious all my life,since I remember myself. I'm 40 now and finally decided to start antidepressants which helps a lot,but now I'm not sure if my symptoms are medication related or celiac disease. I have this back pain that bothers me a lot, feel fatigue. I don't know. I had vitamin deficiencies and iron deficiency and taking supplements and on off,not every day though. Vitamin deficiencies can cause a lot of problems. Have you checked your vitamin levels? 

[Russ H]

On 5/9/2022 at 4:22 AM, Sabaarya said:

Hi Russ, I was diagnosed at the end of august 2021 but still experiencing ups and downs and started gluten-free diet 7 months ago. Somehow 3 months after diet I started to feel very well, but then again back pain,achy body,feet,ear pressure. I also do take antidepressants.When did you get diagnosed?

Hi Sabaarya,

I was diagnosed last summer. It took me several months to get my diet properly sorted out. I was living in Sweden, which was an absolute nightmare for coeliac disease and I had several large exposures to gluten that made me quite ill. I haven't had any significant exposure to gluten since September last year. So, I have been strictly gluten free for over 8 months and low gluten for a while before that. I believe that I have had coeliac disease since I was about 7 years old but it became much worse in Christmas 1999 following influenza. I was misdiagnosed by several doctors despite presenting with the classic signs and symptoms.

About 3 months in, I began to feel much better and experienced a period of trauma for several weeks when I realised how ill I had been and for how long. I am still coming to terms with what has happened to me. Most of the past 20 years has not been worth living for me. Even at 8 months in, my health is still gradually improving - I wake up not feeling tired, my memory is improving, my hand writing is back to normal, my concentration is better and my mood is improved. I haven't experienced back pain but I used to have painful foot joints and Achilles' tendonitis, which have resolved over the past few months. I also suffered from tinnitus, which is much improved. I haven't had a migraine since going gluten free either.

Looking back, my neurological symptoms began to improve about 3 months in but I have noticed the greatest improvement over the past month. Whether this is due to falling antibodies or vitamin and mineral supplementation, I don't know.

 

[Sabaarya]

6 hours ago, Russ314 said:

Hi Sabaarya,

I was diagnosed last summer. It took me several months to get my diet properly sorted out. I was living in Sweden, which was an absolute nightmare for coeliac disease and I had several large exposures to gluten that made me quite ill. I haven't had any significant exposure to gluten since September last year. So, I have been strictly gluten free for over 8 months and low gluten for a while before that. I believe that I have had coeliac disease since I was about 7 years old but it became much worse in Christmas 1999 following influenza. I was misdiagnosed by several doctors despite presenting with the classic signs and symptoms.

About 3 months in, I began to feel much better and experienced a period of trauma for several weeks when I realised how ill I had been and for how long. I am still coming to terms with what has happened to me. Most of the past 20 years has not been worth living for me. Even at 8 months in, my health is still gradually improving - I wake up not feeling tired, my memory is improving, my hand writing is back to normal, my concentration is better and my mood is improved. I haven't experienced back pain but I used to have painful foot joints and Achilles' tendonitis, which have resolved over the past few months. I also suffered from tinnitus, which is much improved. I haven't had a migraine since going gluten free either.

Looking back, my neurological symptoms began to improve about 3 months in but I have noticed the greatest improvement over the past month. Whether this is due to falling antibodies or vitamin and mineral supplementation, I don't know.

 

I’m glad you feel better:). My symptoms started 2 years ago after getting Covid,all of the sudden I started to experience severe feet pain,my muscles was achy all the time,then hand tingling then ringing in my ears and since due to my anxiety issues that I’ve been having since childhood I get my check ups pretty much every 6 months and never had vitamin deficiency and iron deficiency. So last year summer it was a pick of my symptoms,headaches that I’ve never had,extreme fatigue feeling and low iron kind of made me concerned. I asked doctor for stool test and it came back positive for occult blood. I was scared to death that it could be colon cancer had endoscopy and colonoscopy. After the procedure my GI said no cancer just gastrities that I’ve been having since childhood and also he mentioned your duodenum was a little bit red you probably ate something that irritated your duodenum lining,anyways he I took couple of biopsies and will discuss after the results. In 3 days he left me message that he wants to see me before I fly to London,nothing serious. So at my appointment he said that I have celiac and he was it’s really mild and the damage is minimal. At that I had no idea how they measure the damage and for the first time in my life I haven’t asked for the copy of my report,didn’t want to see anything. Later when I did research my nightmare started. All of the health problems that can be caused by celiac. He said my damage was Marsh 3 A score and after 3 months of strict gluten-free diet I should get healed. My dietitian said 3 months is too early. So after diagnose i flew to London and was there for 3 months,even though I was on gluten-free diet but I lived with 8 people so I’m assuming I was getting gluten anyways. I used to have 1 bowel movement when I wa consuming gluten,now it’s 2-3 times per day,solid stool though. My GI says it’s because of gluten free diet,all this different flours that they use in breads and cracker cause BM.And since we came back to LA in December I’m trying my best. Of course I can see improvement but I became super anxious about everything. I started Lexapro antidepressant. I’m planning to have endoscopy in June which is gonna be 10 months after gluten-free diet and so scared. I’ve been taking Lexapro since last year and it’s been on and off. I do take it for 2 months and then stop it again. My back pain now is so weird. 

[Russ H]

Apparently, it can take up to 2 years for the gut to fully heal and several years for the antibodies to come right down. Most doctors don't seem to be aware of how serious and wide ranging to effects of coeliac disease are, particularly neurological.

I experienced something similar with bowel movements.

I have found dealing with coeliac disease to be very trying and stressful. The physical symptoms are fading but it dominates everything I do - I can't spontaneously eat out or eat at a social gathering - everything has to be planned. Travelling and staying away from home, which I have been doing for the past 18 months, is very difficult. I moved into a new place last week and just to have a kitchen and being able to eat 3 square meals a day is such a relief.

Why are you worried about the endoscopy - is it the procedure itself or what they might find?

[Parent of celiac teen]

4 hours ago, Sabaarya said:

I’m glad you feel better:). My symptoms started 2 years ago after getting Covid,all of the sudden I started to experience severe feet pain,my muscles was achy all the time,then hand tingling then ringing in my ears and since due to my anxiety issues that I’ve been having since childhood I get my check ups pretty much every 6 months and never had vitamin deficiency and iron deficiency. So last year summer it was a pick of my symptoms,headaches that I’ve never had,extreme fatigue feeling and low iron kind of made me concerned. I asked doctor for stool test and it came back positive for occult blood. I was scared to death that it could be colon cancer had endoscopy and colonoscopy. After the procedure my GI said no cancer just gastrities that I’ve been having since childhood and also he mentioned your duodenum was a little bit red you probably ate something that irritated your duodenum lining,anyways he I took couple of biopsies and will discuss after the results. In 3 days he left me message that he wants to see me before I fly to London,nothing serious. So at my appointment he said that I have celiac and he was it’s really mild and the damage is minimal. At that I had no idea how they measure the damage and for the first time in my life I haven’t asked for the copy of my report,didn’t want to see anything. Later when I did research my nightmare started. All of the health problems that can be caused by celiac. He said my damage was Marsh 3 A score and after 3 months of strict gluten-free diet I should get healed. My dietitian said 3 months is too early. So after diagnose i flew to London and was there for 3 months,even though I was on gluten-free diet but I lived with 8 people so I’m assuming I was getting gluten anyways. I used to have 1 bowel movement when I wa consuming gluten,now it’s 2-3 times per day,solid stool though. My GI says it’s because of gluten free diet,all this different flours that they use in breads and cracker cause BM.And since we came back to LA in December I’m trying my best. Of course I can see improvement but I became super anxious about everything. I started Lexapro antidepressant. I’m planning to have endoscopy in June which is gonna be 10 months after gluten-free diet and so scared. I’ve been taking Lexapro since last year and it’s been on and off. I do take it for 2 months and then stop it again. My back pain now is so weird. 

Be aware of getting everything gluten free including make up, lipstick, toothpaste, lotion, all hair care products, deoderant, soap, fabric softener, everything!  Dont lick envelopes.

Make your dentist aware that you have Celiacs so they dont use anything in your mouth with gluten. Powdered gloves may contain gluten! Art supplies!  Make your home your safe space and check everything for gluten before you buy it! Tedious but worth it. I use an app called Skin Safe which lists ingredients including gluten. 

[Sabaarya]

3 hours ago, Parent of celiac teen said:

Be aware of getting everything gluten free including make up, lipstick, toothpaste, lotion, all hair care products, deoderant, soap, fabric softener, everything!  Dont lick envelopes.

Make your dentist aware that you have Celiacs so they dont use anything in your mouth with gluten. Powdered gloves may contain gluten! Art supplies!  Make your home your safe space and check everything for gluten before you buy it! Tedious but worth it. I use an app called Skin Safe which lists ingredients including gluten. 

Thank you. I do get everything gluten free including make up and bathing stuff. But it’s really difficult to live in the same household with gluten consuming family members!

3 hours ago, Russ314 said:

Apparently, it can take up to 2 years for the gut to fully heal and several years for the antibodies to come right down. Most doctors don't seem to be aware of how serious and wide ranging to effects of coeliac disease are, particularly neurological.

I experienced something similar with bowel movements.

I have found dealing with coeliac disease to be very trying and stressful. The physical symptoms are fading but it dominates everything I do - I can't spontaneously eat out or eat at a social gathering - everything has to be planned. Travelling and staying away from home, which I have been doing for the past 18 months, is very difficult. I moved into a new place last week and just to have a kitchen and being able to eat 3 square meals a day is such a relief.

Why are you worried about the endoscopy - is it the procedure itself or what they might find?

Well, I’m scared of not getting any improvements on my healing process

[Russ H]

On 5/12/2022 at 12:15 AM, Sabaarya said:

Thank you. I do get everything gluten free including make up and bathing stuff. But it’s really difficult to live in the same household with gluten consuming family members!

Well, I’m scared of not getting any improvements on my healing process

The fact that your bowel movements have improved indicates that your gut is healing. I wish that I had taken the opportunity to have an endoscopy when I was offered one in Sweden.

[Sabaarya]

4 hours ago, Russ314 said:

The fact that your bowel movements have improved indicates that your gut is healing. I wish that I had taken the opportunity to have an endoscopy when I was offered one in Sweden.

Actually my bowel movement was better before. The texture was solid before gluten-free now it’s different now it became frequent most of the days,like 2-3 times per day and texture is fluffy. It might be caused by diet change. All packages gluten-free products,including breads,crackers,chips contain lots of starches,mixes of different flours with lots of fiber. Sorry for so much details. My main symptom was gas,anemia,hand tingling,vitamin deficiencies,muscle pain,ear ringing.I would get diarreha sometimes and more constipation  I would say. 4 months of gluten-free diet improved my blood levels. 
so you haven’t done endoscopy at all? But endoscopy is main tool of diagnose and damage level…

[Russ H]

6 minutes ago, Sabaarya said:

Actually my bowel movement was better before. The texture was solid before gluten-free now it’s different now it became frequent most of the days,like 2-3 times per day and texture is fluffy. It might be caused by diet change. All packages gluten-free products,including breads,crackers,chips contain lots of starches,mixes of different flours with lots of fiber. Sorry for so much details. My main symptom was gas,anemia,hand tingling,vitamin deficiencies,muscle pain,ear ringing.I would get diarreha sometimes and more constipation  I would say. 4 months of gluten-free diet improved my blood levels. 
so you haven’t done endoscopy at all? But endoscopy is main tool of diagnose and damage level…

I had steatorrhea - like foul-smelling, sticky porridge. Fat was going straight through me. I only used to go once a day but it was time consuming and unpleasant. Now I go 2 or 3 times but I have almost normal bowel movements.

At the time, I was in Sweden during the coronavirus pandemic. They had this crazy anti-mask thing going on - staff in hospitals did not wear masks and mocked visitors or told them to take their masks off. I thought it was too risky. Positive antibody was enough for me, and I thought I would deal with it after the pandemic. Now I am back in the UK, I doubt a GP would order one as I am under the age 55 cutoff (they have moved to antibody-only for diagnosis of people under 55, unless you have any alarm signs & symptoms).

[Sabaarya]

1 hour ago, Russ314 said:

I had steatorrhea - like foul-smelling, sticky porridge. Fat was going straight through me. I only used to go once a day but it was time consuming and unpleasant. Now I go 2 or 3 times but I have almost normal bowel movements.

At the time, I was in Sweden during the coronavirus pandemic. They had this crazy anti-mask thing going on - staff in hospitals did not wear masks and mocked visitors or told them to take their masks off. I thought it was too risky. Positive antibody was enough for me, and I thought I would deal with it after the pandemic. Now I am back in the UK, I doubt a GP would order one as I am under the age 55 cutoff (they have moved to antibody-only for diagnosis of people under 55, unless you have any alarm signs & symptoms).

Wow,that’s so unusual. Here in US you have to have biopsy even with positive antibodies. My doctor was not expecting celiac in my case. I had endoscopy and colonoscopy because of the occult blood in my stool. After positive biopsy for celiac,they checked my antibodies which came back negative and absolutely in normal range. Then doctor ordered genetic panel for celiac which was positive and he was able to confirm celiac diagnose. My GI said that is so uncommon to have negative antibodies but my son’s GI told me that nowadays they see a lot of cases with negative antibodies and positive biopsies from small intestine.

[Russ H]

2 hours ago, Sabaarya said:

Wow,that’s so unusual. Here in US you have to have biopsy even with positive antibodies. My doctor was not expecting celiac in my case. I had endoscopy and colonoscopy because of the occult blood in my stool. After positive biopsy for celiac,they checked my antibodies which came back negative and absolutely in normal range. Then doctor ordered genetic panel for celiac which was positive and he was able to confirm celiac diagnose. My GI said that is so uncommon to have negative antibodies but my son’s GI told me that nowadays they see a lot of cases with negative antibodies and positive biopsies from small intestine.

The more I read about it, the more complex and less-understood coeliac disease seems to be. People with neurological symptoms often have antibodies to tTG6, and in the UK there is only one specialist centre that tests for that. Perhaps there are other auto-antibodies yet to be discovered

[Sabaarya]

2 hours ago, Russ314 said:

The more I read about it, the more complex and less-understood coeliac disease seems to be. People with neurological symptoms often have antibodies to tTG6, and in the UK there is only one specialist centre that tests for that. Perhaps there are other auto-antibodies yet to be discovered

Maybe

[knitty kitty]

Anemia can cause negative antibody test results.  So can diabetes.  

[Sabaarya]

4 hours ago, knitty kitty said:

Anemia can cause negative antibody test results.  So can diabetes.  

Interesting…