Neurological Symptoms

[Ginger38]

Just curious if anyone else experiences neurological symptoms?? If so what kind??

I have noticed that I sometimes I have trouble finding words or saying the wrong words.. I also have dizziness and I just feel really weird mentally and physically. These spells make it hard to function, walk etc.

It honestly scares me bc it’s such a strange feeling and not being able to find or say the right words scares me. I also have severe anxiety and PTSD , so it could be something to do with that too I guess, just wondering about celiac disease/gluten 

[marcel g]

On 8/4/2022 at 8:59 PM, Ginger38 said:

Just curious if anyone else experiences neurological symptoms?? If so what kind??

I have noticed that I sometimes I have trouble finding words or saying the wrong words.. I also have dizziness and I just feel really weird mentally and physically. These spells make it hard to function, walk etc.

It honestly scares me bc it’s such a strange feeling and not being able to find or say the right words scares me. I also have severe anxiety and PTSD , so it could be something to do with that too I guess, just wondering about celiac disease/gluten 

My understanding is that neurological symptoms are common with celiac and non-celiac-gluten-sensitivity.

I have tingling and pins and needles, as well as muscle twitching. Mostly in my arms and legs. I also have days where I feel like I've been glutened (I live in Asia, so restaurant food + soy sauce is hard to avoid.) and then I feel extra tired, have trouble concentrating or thinking my way through anything, am very irritable, and I'm more anxious than normal.

The pins and needles has been happening for about 8 months now, but the mental neurological symptoms have been going on for a lot longer. I'm unlikely to be celiac, since I don't carry the genes for it, but I suspect I'm Non-Celiac-Gluten-Sensitive, plus Chronic Fatigue Syndrome.  Or some other unknown auto-immune disorder of some kind that doesn't show up on standard tests.

[Ddowda74]

I definitely have weird head sensations and anxiety. I am getting ready to cut gluten completely this week. I have read that it is very common and anxiety tends to go away ..at least most of the time. I am hoping all of it does. Has anyone been tested for food allergies in addition to gluten?

[trents]

Welcome to the forum, Ddowda74!

Many of us have been tested in various ways for food allergies in addition to gluten. It is very common to have other food allergies and intolerances in addition to gluten for those who have celiac disease or gluten sensitivity. I have allergies to 30+ foods and air-born allergens. Too many to address them all so you have to make some choices if you don't want to starve. Eliminate the ones that you react the most strongly to.

Having said that, please understand that problems with gluten are usually not allergic reactions. Most gluten reactions fall into one of two groups. There are those with NCGS (Non Celiac Gluten Sensitivity) and those with celiac disease. We know much more about the immune system pathway of celiac disease than we do about NCGS. Celiac disease is not a food allergy, it is an autoimmune response to the ingestion of gluten that causes damage to the small bowel lining which, in turn, can lead to many other medical issues. NCGS shares many of the same symptoms with celiac disease but it does not damage the lining of the small bowel.

My strong advice is that before you go gluten free you should get tested for celiac disease. There is no test at the present time for NCGS. A diagnosis of NCGS depends on first eliminating celiac disease for which there are some specific tests. If you go gluten free before all testing is complete you will likely invalidate the testing.

[Ddowda74]

19 minutes ago, trents said:

Welcome to the forum, Ddowda74!

Many of us have been tested in various ways for food allergies in addition to gluten. It is very common to have other food allergies and intolerances in addition to gluten for those who have celiac disease or gluten sensitivity. I have allergies to 30+ foods and air-born allergens. Too many to address them all so you have to make some choices if you don't want to starve. Eliminate the ones that you react the most strongly to.

Having said that, please understand that problems with gluten are usually not allergic reactions. Most gluten reactions fall into one of two groups. There are those with NCGS (Non Celiac Gluten Sensitivity) and those with celiac disease. We know much more about the immune system pathway of celiac disease than we do about NCGS. Celiac disease is not a food allergy, it is an autoimmune response to the ingestion of gluten that causes damage to the small bowel lining which, in turn, can lead to many other medical issues. NCGS shares many of the same symptoms with celiac disease but it does not damage the lining of the small bowel.

My strong advice is that before you go gluten free you should get tested for celiac disease. There is no test at the present time for NCGS. A diagnosis of NCGS depends on first eliminating celiac disease for which there are some specific tests. If you go gluten free before all testing is complete you will likely invalidate the testing.

Thank you so much for your response. I appreciate it. I did have a scope about ten years ago and it proved not to be celiac. Would you suggest being scoped again? 

[trents]

I would go for the serum antibody test before a scope. And that's what most doctors do first as it is very cost effective. Ask for a full celiac panel including total IGA, tTG-IGA and Deamidated gliadin peptide (DGP IgA and IgG). Many doctors don't know much about dx celiac disease and will only order the tTG-IGA. That is the best single test but can miss some folks who actually do have celiac disease whose immune system respond eccentrically. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Some experts believe that NCGS can be a precursor to developing celiac disease later on. Our understanding of some of these things is less than complete and these gluten-related diseases sometimes don't fit neatly into our little black and white categories. And you can develop celiac disease at anytime in life.

[Ddowda74]

35 minutes ago, trents said:

I would go for the serum antibody test before a scope. And that's what most doctors do first as it is very cost effective. Ask for a full celiac panel including total IGA, tTG-IGA and Deamidated gliadin peptide (DGP IgA and IgG). Many doctors don't know much about dx celiac disease and will only order the tTG-IGA. That is the best single test but can miss some folks who actually do have celiac disease whose immune system respond eccentrically. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Some experts believe that NCGS can be a precursor to developing celiac disease later on. Our understanding of some of these things is less than complete and these gluten-related diseases sometimes don't fit neatly into our little black and white categories. And you can develop celiac disease at anytime in life.

Thank you so much! I really appreciate the guidance. 

[Scott Adams]

On 8/4/2022 at 6:59 AM, Ginger38 said:

Just curious if anyone else experiences neurological symptoms?? If so what kind??

I have noticed that I sometimes I have trouble finding words or saying the wrong words.. I also have dizziness and I just feel really weird mentally and physically. These spells make it hard to function, walk etc.

It honestly scares me bc it’s such a strange feeling and not being able to find or say the right words scares me. I also have severe anxiety and PTSD , so it could be something to do with that too I guess, just wondering about celiac disease/gluten 

I have had similar symptoms, and something that helped me was adding choline and benfotiamine (a form of B1) to my already large amount of supplementation. I also take a B-complex, vitamin D, and Citracal (Calcium, magnesium & zinc) supplements, but it was not until I added choline and benfotiamine that helped my memory and mental issues clear up.

[itarachiu]

When I get glutened this is what I experience, at least the neurological symptoms:

Panic attacks, anxiety, fatigue.

Blurred vision, similar when you consume alcohol.

I get very scared at thunderstorms when it rains, usually they don't scare me but if I'm glutened it does also every strong sound that I don't expect it... does scare me.

Overall I feel like I want to be alone I don't respond to phone calls, I avoid getting outside, I don't want to talk to nobody, my brain does not function, I can't think, my memory is elsewhere so I became very isolated which is the opposite for my personality.

The only thing that relax me is Minecraft soundtrack music, everytime I get glutened I listen that for hours, first hours are the worse... Sometimes drinking water helps, sometimes I think my body reacts with water as well... No matter what goes into the stomach I feel pain getting worse doesn't matter if is gluten free...

[Rogol72]

5 hours ago, Scott Adams said:

I have had similar symptoms, and something that helped me was adding choline and benfotiamine (a form of B1) to my already large amount of supplementation. I also take a B-complex, vitamin D, and Citracal (Calcium, magnesium & zinc) supplements, but it was not until I added choline and benfotiamine that helped my memory and mental issues clear up.

@Scott Adams,

I'm curious. What Brand/Type of Choline do you take? Is the regular choline bitartrate or CDP Choline (Cognizin)? I believe the latter is the most effective.

[Scott Adams]

I've been using this one:

https://www.amazon.com/dp/B09MK6D652 

[trents]

I've been using this one: https://smile.amazon.com/dp/B00I080C48?psc=1&ref=ppx_yo2ov_dt_b_product_details

[Posterboy]

Rogol72,

You might also try some Lecithin.  It is broken down in the body to 12 to 13 percent (approx.) Acteylcholine and to Choline as well obviously.

Here is an article about it.

https://www.verywellhealth.com/lecithin-4771091

I find when I need a "Brain Boost" like before an important meeting at work etc.....it seems to help me!

It is best to take with foods to help absorption......many people sprinkle Lecithin granules on their morning breakfast but I always seem to  use capsules instead of granules....

I hope this is helpful but it is not medical advice....

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Scott Adams]

I am not sure if lecithin contains soy oil, but it is usually made from soy. I brought this up because of this article:

https://www.sciencedaily.com/releases/2020/01/200117080827.htm 

[Posterboy]

Scott,

Nice catch, I was just trying to be quick and didn't mention that there are three main types of Lecithin.....so be sure to check your source!!!!!!

I think the article I cited points that out.....but be sure to find the Egg form or Sunflower form if you do decide to try Lecithin.

I have alternated from between the Egg Lecithin and Sunflower Lecithin forms.  The more commonly available forms are the Soy form and should be avoided for many reasons ++++ the new research that Scott shared on Soy!

Fyi,  to anybody else who comes across this thread...... Soy can be particular hard on men as It can interfere (or is thought to interfere) with our hormones.....

If it easy to find.....it is probably the soy form....

I hope this is helpful but it is not medical advice.

Posterboy,

[busyGF]

On 8/4/2022 at 9:59 AM, Ginger38 said:

Just curious if anyone else experiences neurological symptoms?? If so what kind??

I have noticed that I sometimes I have trouble finding words or saying the wrong words.. I also have dizziness and I just feel really weird mentally and physically. These spells make it hard to function, walk etc.

It honestly scares me bc it’s such a strange feeling and not being able to find or say the right words scares me. I also have severe anxiety and PTSD , so it could be something to do with that too I guess, just wondering about celiac disease/gluten 

Hi Ginger38,

I know exactly what you mean!  I went through the celiac testing like 14 years ago and at that time they really didn't talk much about any of the symptoms of celiac or non-celiac gluten sensitivity.  It turned out for me since it took like 3 months to get into a GI doctor to get testing and I had figured out in the meantime that I felt better not eating gluten, that since I wasn't eating gluten at the time of my testing, they couldn't say for sure if I had celiac or not but a lot of my markers were high.  Anyway, my biggest complaint besides GI symptoms at the time when I was still eating gluten was the tremendous amount of brain fog, I mean to the point where I couldn't concentrate or even think sometimes and thought I was going crazy.  When I mentioned that to the GI doctor he said that would have nothing to do with celiac or non celiac gluten sensitivity.  Of course, nowadays it is a very common symptom that you have a reaction to gluten.  So you're not alone!  I would get tested for sure.  Also, my anxiety increased a ton during that time of my life with the brain fog so from what I have read, increased anxiety goes along with it.  Hope that helps and you find some answers!

[knitty kitty]

On 8/4/2022 at 8:59 AM, Ginger38 said:

trouble finding words or saying the wrong words.. dizziness, feel really weird mentally and physically... hard to function, walk etc., severe anxiety and PTSD...

@itarachiu, and dear readers,

These are symptoms I have experienced while deficient in B vitamins, especially Thiamine.  

There's eight B vitamins.  The eight B vitamins work together, so if we're deficient in one, we're probably low in the others as well.  So it's best to supplement all eight.  

Thiamine can become deficient quickest because it can't be stored long.  We can become deficient in as little as a week.  We can roll along for years with borderline insufficiency.  Symptoms may fluctuate as some days we might consume plenty of Thiamine, while on other days we don't and symptoms may mysteriously reappear.

The brain uses lots of Thiamine just thinking and running all the autonomic nervous system,  background programs you don't have to think about like breathing, digestion, blood pressure, etc.  Changes like asthma or air hunger, digestive changes, Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome, and even adrenal fatigue can signal thiamine insufficiency.  

The fight or flight response, controlled by the autonomic systems which require lots of Thiamine, can get stuck in the "on" position resulting in anxiety, panic attacks, and being easily overwhelmed by environmental factors.  Vision changes are a classic symptom of thiamine deficiency.  Changes in gait (how you walk) or stance can indicate thiamine deficiency.  

The decrease in mind and brain function is very scary indeed.  I have experienced not being able to find the right words, not being able to speak, not being able to function "normally" while coping with anxiety, panic attacks and PTSD.  

Thiamine is required for nerve transmission and for insulating the nerve cells.  Without enough thiamine, we develop peripheral neuropathy, pins and needles.  Peripheral neuropathy can be symptomatic of deficiencies in Niacin (Vitamin B3), Pyridoxine (B6), and Cobalamine (B12).  The B vitamins work together.

If a person eats a diet that has lots of carbohydrates (rice, bread, cookies, soda, candy, chips, alcohol, etc.), a thiamine deficiency can develop.  Many types of carbohydrates do not contain thiamine or enough thiamine to turn them into energy.  Thiamine is required to turn carbohydrates into energy.  When thiamine is low, our bodies store the carbohydrates as fat.  The increase in obesity is proof of this.  One study showed that the majority of morbidly obese people getting gastric bypass surgery for weight loss are thiamine deficient.  The majority of people with diabetes are thiamine deficient.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

To correct my thiamine deficiency, I took high dose (500- 1000 mgs per day) Thiamine.  My symptoms began improving within hours.  

The World Health Organization says to take 500 mg thiamine hydrochloride three times a day for several days.  If improvement is seen, thiamine deficiency can be diagnosed.  WHO uses this diagnostic method because blood tests for thiamine levels are not reliable.  

I also supplemented with a B Complex supplement twice a day.  And I take Allithiamine and Benfotiamine, lipid soluble forms of Thiamine, and magnesium.  Magnesium is needed for Thiamine to function properly.  

Gastrointestinal Beriberi is thiamine deficiency which has primarily gastrointestinal symptoms (diarrhea, bloating, cramping, etc.)  which can become more severe after consuming a high carbohydrate meal.  Yes, the symptoms are similar to Celiac disease.  Try the WHO diagnostic test described above.  

 

[Ginger38]

On 8/7/2022 at 10:45 PM, marcel g said:

My understanding is that neurological symptoms are common with celiac and non-celiac-gluten-sensitivity.

I have tingling and pins and needles, as well as muscle twitching. Mostly in my arms and legs. I also have days where I feel like I've been glutened (I live in Asia, so restaurant food + soy sauce is hard to avoid.) and then I feel extra tired, have trouble concentrating or thinking my way through anything, am very irritable, and I'm more anxious than normal.

The pins and needles has been happening for about 8 months now, but the mental neurological symptoms have been going on for a lot longer. I'm unlikely to be celiac, since I don't carry the genes for it, but I suspect I'm Non-Celiac-Gluten-Sensitive, plus Chronic Fatigue Syndrome.  Or some other unknown auto-immune disorder of some kind that doesn't show up on standard tests.

Thank you for sharing. So do you have symptoms even when avoiding gluten? I have fibromyalgia and chronic fatigue 

On 8/7/2022 at 11:28 PM, Ddowda74 said:

I definitely have weird head sensations and anxiety. I am getting ready to cut gluten completely this week. I have read that it is very common and anxiety tends to go away ..at least most of the time. I am hoping all of it does. Has anyone been tested for food allergies in addition to gluten?

My anxiety gets super worse if I consume gluten or get cross contact 

[Ginger38]

On 8/8/2022 at 12:57 PM, Scott Adams said:

I have had similar symptoms, and something that helped me was adding choline and benfotiamine (a form of B1) to my already large amount of supplementation. I also take a B-complex, vitamin D, and Citracal (Calcium, magnesium & zinc) supplements, but it was not until I added choline and benfotiamine that helped my memory and mental issues clear up.

I started taking a bentofiamine (life extension). I only take 1 a day. Sometimes it gives me like so much energy it’s crazy - is that normal 

On 8/8/2022 at 5:24 PM, itarachiu said:

When I get glutened this is what I experience, at least the neurological symptoms:

Panic attacks, anxiety, fatigue.

Blurred vision, similar when you consume alcohol.

I get very scared at thunderstorms when it rains, usually they don't scare me but if I'm glutened it does also every strong sound that I don't expect it... does scare me.

Overall I feel like I want to be alone I don't respond to phone calls, I avoid getting outside, I don't want to talk to nobody, my brain does not function, I can't think, my memory is elsewhere so I became very isolated which is the opposite for my personality.

The only thing that relax me is Minecraft soundtrack music, everytime I get glutened I listen that for hours, first hours are the worse... Sometimes drinking water helps, sometimes I think my body reacts with water as well... No matter what goes into the stomach I feel pain getting worse doesn't matter if is gluten free...

Thank you for sharing. The effects of gluten are very strong. I have horrible increase in my anxiety when I am glutened. I have also noticed since going gluten-free if I get any amount now my symptoms are very severe and scary 

[Ginger38]

On 8/9/2022 at 9:27 PM, busyglutenfree said:

Hi Ginger38,

I know exactly what you mean!  I went through the celiac testing like 14 years ago and at that time they really didn't talk much about any of the symptoms of celiac or non-celiac gluten sensitivity.  It turned out for me since it took like 3 months to get into a GI doctor to get testing and I had figured out in the meantime that I felt better not eating gluten, that since I wasn't eating gluten at the time of my testing, they couldn't say for sure if I had celiac or not but a lot of my markers were high.  Anyway, my biggest complaint besides GI symptoms at the time when I was still eating gluten was the tremendous amount of brain fog, I mean to the point where I couldn't concentrate or even think sometimes and thought I was going crazy.  When I mentioned that to the GI doctor he said that would have nothing to do with celiac or non celiac gluten sensitivity.  Of course, nowadays it is a very common symptom that you have a reaction to gluten.  So you're not alone!  I would get tested for sure.  Also, my anxiety increased a ton during that time of my life with the brain fog so from what I have read, increased anxiety goes along with it.  Hope that helps and you find some answers!

Thank you. We Sound a lot a like. My anxiety always gets so much worse with gluten and Oh my the brain fog is terrible… mine is so bad I can’t function or work and I can’t even find words. It is a weird feeling that I don’t like. I also have what feels like the flu with joint pain and aches. And the GI symptoms are terrible. My journey has been confusing, but I was already off gluten by the time I saw the GI doc. Of course to have the endoscopy I would have to go back on gluten and I don’t think I can make it that long 

[Ginger38]

On 8/9/2022 at 10:41 PM, knitty kitty said:

@itarachiu, and dear readers,

These are symptoms I have experienced while deficient in B vitamins, especially Thiamine.  

There's eight B vitamins.  The eight B vitamins work together, so if we're deficient in one, we're probably low in the others as well.  So it's best to supplement all eight.  

Thiamine can become deficient quickest because it can't be stored long.  We can become deficient in as little as a week.  We can roll along for years with borderline insufficiency.  Symptoms may fluctuate as some days we might consume plenty of Thiamine, while on other days we don't and symptoms may mysteriously reappear.

The brain uses lots of Thiamine just thinking and running all the autonomic nervous system,  background programs you don't have to think about like breathing, digestion, blood pressure, etc.  Changes like asthma or air hunger, digestive changes, Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome, and even adrenal fatigue can signal thiamine insufficiency.  

The fight or flight response, controlled by the autonomic systems which require lots of Thiamine, can get stuck in the "on" position resulting in anxiety, panic attacks, and being easily overwhelmed by environmental factors.  Vision changes are a classic symptom of thiamine deficiency.  Changes in gait (how you walk) or stance can indicate thiamine deficiency.  

The decrease in mind and brain function is very scary indeed.  I have experienced not being able to find the right words, not being able to speak, not being able to function "normally" while coping with anxiety, panic attacks and PTSD.  

Thiamine is required for nerve transmission and for insulating the nerve cells.  Without enough thiamine, we develop peripheral neuropathy, pins and needles.  Peripheral neuropathy can be symptomatic of deficiencies in Niacin (Vitamin B3), Pyridoxine (B6), and Cobalamine (B12).  The B vitamins work together.

If a person eats a diet that has lots of carbohydrates (rice, bread, cookies, soda, candy, chips, alcohol, etc.), a thiamine deficiency can develop.  Many types of carbohydrates do not contain thiamine or enough thiamine to turn them into energy.  Thiamine is required to turn carbohydrates into energy.  When thiamine is low, our bodies store the carbohydrates as fat.  The increase in obesity is proof of this.  One study showed that the majority of morbidly obese people getting gastric bypass surgery for weight loss are thiamine deficient.  The majority of people with diabetes are thiamine deficient.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

To correct my thiamine deficiency, I took high dose (500- 1000 mgs per day) Thiamine.  My symptoms began improving within hours.  

The World Health Organization says to take 500 mg thiamine hydrochloride three times a day for several days.  If improvement is seen, thiamine deficiency can be diagnosed.  WHO uses this diagnostic method because blood tests for thiamine levels are not reliable.  

I also supplemented with a B Complex supplement twice a day.  And I take Allithiamine and Benfotiamine, lipid soluble forms of Thiamine, and magnesium.  Magnesium is needed for Thiamine to function properly.  

Gastrointestinal Beriberi is thiamine deficiency which has primarily gastrointestinal symptoms (diarrhea, bloating, cramping, etc.)  which can become more severe after consuming a high carbohydrate meal.  Yes, the symptoms are similar to Celiac disease.  Try the WHO diagnostic test described above.  

 

I have been taking the life extension B1 with bentofiamine. I take one of those a  Day. I am also taking super B complex, biotin, zinc, vitamin D and centrum women under 50 once daily …

I have PTSD and am pretty convinced I still stay in fight or fight mode all day everyday due to my past trauma 

[knitty kitty]

2 hours ago, Ginger38 said:

I have been taking the life extension B1 with bentofiamine. I take one of those a  Day. I am also taking super B complex, biotin, zinc, vitamin D and centrum women under 50 once daily …

I have PTSD and am pretty convinced I still stay in fight or fight mode all day everyday due to my past trauma 

One Benfotiamine a day may not be enough.  

In thiamine deficiency, the transporters that pull thiamine into cells quit working.  To get thiamine into the cells and turn the transporters back on we need to take more Thiamine so it will flood the system (like storming the capital).  

Take Benfotiamine with every meal.  Your reaction -feeling so much energy- is normal.  It is your body adjusting from operating on minimum rations to having plenty and being able to function properly.  

Benfotiamine will also help with fibromyalgia and chronic fatigue syndrome, as well as PTSD.  I've experienced all these and high dose thiamine is the only thing that has resolved them for me.  

Vitamin D blood levels should be around eighty nmol/l for it to function as it was meant to.  

[Lee Bee]

Hi, this has been super useful. I've been battling with neuro symptoms for a while mainly jerking of my tongue and jaw, twitching of facial muscles, brain fog, loosing my train of thought, not find words. And it's not only caused by gluten ingestion. Other food sources cause it as well. I haven't been formally diagnosed with celiac but I strongly feel that I have it. I have co-morbidities: hypothyroidism and scleroderma. And then there is the joint pain and inflamed nodules on my arms when I eat things I shouldn't be eating. My diet has been reduced to a meat or fish with mushrooms, carrots and peppers and fruit. All other food stuffs cause some form of inflammation or neuro symptoms. Sometimes I don't even know what I've eaten that makes me react. Can't have dried fruit, recently discovered that even lactose free milk causes phlegm on my chest... Sorry all I actually wanted to say was thank you for this website! It's good to know I'm not alone! 

[marcel g]

On 8/12/2022 at 1:32 AM, knitty kitty said:

One Benfotiamine a day may not be enough.  

In thiamine deficiency, the transporters that pull thiamine into cells quit working.  To get thiamine into the cells and turn the transporters back on we need to take more Thiamine so it will flood the system (like storming the capital).  

Take Benfotiamine with every meal.  Your reaction -feeling so much energy- is normal.  It is your body adjusting from operating on minimum rations to having plenty and being able to function properly.  

Benfotiamine will also help with fibromyalgia and chronic fatigue syndrome, as well as PTSD.  I've experienced all these and high dose thiamine is the only thing that has resolved them for me.  

Vitamin D blood levels should be around eighty nmol/l for it to function as it was meant to.  

I’ve retried your technique of 1500mg/day for 3 days, but it didn’t significantly change my fatigue level. Weirdly, I did feel like I had a bit more physical energy, but I was still fatigued. Still missed work and needed a lot of naps. Tingling and twitching didn’t change, as well as the lightheadedness.

I also got my latest blood tests back, calcium and magnesium are normal, B1 and B3 are quite a bit higher than normal. TSH also still normal. 

I’m going to try to get a referral to a neurologist next week. I’d like to know if what I have is MS or peripheral neuropathy, or something else.

thanks for all the info.

[marcel g]

On 8/11/2022 at 11:00 PM, Ginger38 said:

Thank you for sharing. So do you have symptoms even when avoiding gluten? I have fibromyalgia and chronic fatigue 

My anxiety gets super worse if I consume gluten or get cross contact 

My anxiety has been a lot better since starting an ssri, getting a better therapist, and getting better sleep, as well as removing gluten, and removing all news and Twitter. I feel like an ostrich with my head in the sand, but I can’t really cope with a lot right now and it helps a lot. The brain fog and irritability in particular seems better without gluten. 

and yes, my tingling and fatigue and lightheadedness continues even without gluten. Cutting out the gluten helped, but that was a temporary respite, as the overall trend for me continues to gradually get worse. I suspect I have something other than celiac and hope I can get to see a neurologist. Maybe the gluten exacerbates some other underlying condition I have .