Neurological symptoms

[Joanna24]

Hi,

I am curious if somebody had slurred speech, difficulty with swallowing, twitches, and face and mouth numbness as the only symptoms of celiac disease. My neurologist ordered gliadin antibodies igG test and my result was 32.8 with a normal range <15. He said I have celiac and have to start gluten free diet. I have been gluten-free for almost three weeks, but the only change I see so far is that the numbness got better. I can still feel it, but less than before. How long it takes for speech and swallowing to get better?

[cristiana]

Hello Joanna24 and welcome to the forum!

I am so glad you are already seeing some improvement in your symptoms since coming off gluten.  

I remember years ago reading on this website that neurological symptoms can be some of the slowest to improve.  I wish I could point you to that post, but can't remember where it was.  But it did give me hope when I was dealing with tingling and buzzing in my left leg, and both feet, and twitching in various parts of my face, and numb arms on waking.  These all seemed to take an age to improve, but they did, although I still get the occasional symptom, but nothing like before.

When you were diagnosed, were you tested for deficiencies?  Sometimes low levels of ferritin, B12 and magnesium, for example, can cause bizarre symptoms.   If you haven't been tested, I think you ought to be as this may give you some valuable clues as to what supplements might help you at the moment.

Also, just a thought, do you suffer from migraines at all?  Coeliacs can be more prone to migraines and some people do find that some of the symptoms you describe are part and parcel of certain types of migraine? 

Cristiana

 

 

 

 

[knitty kitty]

@Joanna24,

Welcome to the forum!

Celiac Disease is a disease of malabsorption.  Vitamins and minerals normally absorbed in the small intestine cannot be absorbed because of damage to the lining of the intestinal tract.    Checking for vitamin and mineral deficiencies are part of proper follow up care.

Your symptoms "slurred speech, difficulty with swallowing, twitches, and face and mouth numbness" are indicative of Vitamin B12 and/or Thiamine (V Vitamin B1) deficiency.  These are serious symptoms.  They will get worse if not treated. 

I experienced the same symptoms with slurred speech, difficulty swallowing, numbness, twitching as well as Bell's Palsy, and both hearing and balance problems and dementia.  My doctors were not knowledgeable about vitamin deficiencies, so your doctor may be missing the symptoms of vitamin deficiencies, too.  

My symptoms disappeared as my vitamin and mineral deficiencies were corrected. 

Vitamin B12 deficiency can be tested with a blood test in your doctor's office.  Other B vitamins (there's eight total) are not accurately measured with a blood test.  However, the World Health Organization (WHO) states that a thiamine deficiency exists if a person has improvement after being administered 300mg of thiamine for several days.  People deficient in thiamine usually have improved health within hours to days.

Discuss taking a good B-Complex and mineral supplements with your doctor.  An IV full of vitamins called a banana bag (so called because riboflavin (vitamin B2) gives it a yellow color) may be warranted.  

Do contact your doctor.  

[Joanna24]

4 hours ago, cristiana said:

Hello Joanna24 and welcome to the forum!

I am so glad you are already seeing some improvement in your symptoms since coming off gluten.  

I remember years ago reading on this website that neurological symptoms can be some of the slowest to improve.  I wish I could point you to that post, but can't remember where it was.  But it did give me hope when I was dealing with tingling and buzzing in my left leg, and both feet, and twitching in various parts of my face, and numb arms on waking.  These all seemed to take an age to improve, but they did, although I still get the occasional symptom, but nothing like before.

When you were diagnosed, were you tested for deficiencies?  Sometimes low levels of ferritin, B12 and magnesium, for example, can cause bizarre symptoms.   If you haven't been tested, I think you ought to be as this may give you some valuable clues as to what supplements might help you at the moment.

Also, just a thought, do you suffer from migraines at all?  Coeliacs can be more prone to migraines and some people do find that some of the symptoms you describe are part and parcel of certain types of migraine? 

Cristiana

 

 

 

 

Thank you, Cristiana. I was tested for vitamins and minerals deficiency and I have been taking magnesium and iron, plus vitamin E and D3 for over a month now. Vitamin B12 was within normal range. I never suffered from migraines. I hope this will help some, just need to take those supplements for little longer. 

[Joanna24]

1 hour ago, knitty kitty said:

@Joanna24,

Welcome to the forum!

Celiac Disease is a disease of malabsorption.  Vitamins and minerals normally absorbed in the small intestine cannot be absorbed because of damage to the lining of the intestinal tract.    Checking for vitamin and mineral deficiencies are part of proper follow up care.

Your symptoms "slurred speech, difficulty with swallowing, twitches, and face and mouth numbness" are indicative of Vitamin B12 and/or Thiamine (V Vitamin B1) deficiency.  These are serious symptoms.  They will get worse if not treated. 

I experienced the same symptoms with slurred speech, difficulty swallowing, numbness, twitching as well as Bell's Palsy, and both hearing and balance problems and dementia.  My doctors were not knowledgeable about vitamin deficiencies, so your doctor may be missing the symptoms of vitamin deficiencies, too.  

My symptoms disappeared as my vitamin and mineral deficiencies were corrected. 

Vitamin B12 deficiency can be tested with a blood test in your doctor's office.  Other B vitamins (there's eight total) are not accurately measured with a blood test.  However, the World Health Organization (WHO) states that a thiamine deficiency exists if a person has improvement after being administered 300mg of thiamine for several days.  People deficient in thiamine usually have improved health within hours to days.

Discuss taking a good B-Complex and mineral supplements with your doctor.  An IV full of vitamins called a banana bag (so called because riboflavin (vitamin B2) gives it a yellow color) may be warranted.  

Do contact your doctor.  

Thank you! I was tested for minerals and vitamins deficiency. Vitamin B12 was within normal range, but I was never tested for other vitamins B. Maybe this is my problem. Is thiamine 300 mg available otc sufficient or it has to be prescribed by a doctor? I checked at the store I am getting my supplements from, recommend by my doctor, but B-complex they have contains only 50 mg of thiamine. Did you take thiamin as well? How long it took for your symptoms to disappear?

Joanna

[cristiana]

28 minutes ago, Joanna24 said:

Thank you! I was tested for minerals and vitamins deficiency. Vitamin B12 was within normal range, but I was never tested for other vitamins B. Maybe this is my problem. Is thiamine 300 mg available otc sufficient or it has to be prescribed by a doctor? I checked at the store I am getting my supplements from, recommend by my doctor, but B-complex they have contains only 50 mg of thiamine. Did you take thiamin as well? How long it took for your symptoms to disappear?

Joanna

Joanna - my Vitamin B12 was within normal range, but was low-normal, i.e. just within normal range by UK lab standards.    I felt a lot better when they were around 500, which I gather in some countries is considered low normal.  Do you know what your levels were, and what were the lab's normal parameters?

Edited January 18, 2022 by cristiana

[Scott Adams]

Welcome to the forum! It can take up to 2 years for some of these symptoms to go away, possibly even longer. This category is devoted to articles on this topic:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[knitty kitty]

1 hour ago, Joanna24 said:

Thank you! I was tested for minerals and vitamins deficiency. Vitamin B12 was within normal range, but I was never tested for other vitamins B. Maybe this is my problem. Is thiamine 300 mg available otc sufficient or it has to be prescribed by a doctor? I checked at the store I am getting my supplements from, recommend by my doctor, but B-complex they have contains only 50 mg of thiamine. Did you take thiamin as well? How long it took for your symptoms to disappear?

Joanna

Joanna,

I took over the counter thiamine in the form Thiamine HCl (hydrochloride).  Each tablet is 100 mg.  

https://www.nowfoods.com/products/supplements/vitamin-b-1-100-mg-tablets

I took one 100mg tablet with each meal and snacks.  I also took a daily B Complex vitamin that already had thiamine in it.  Thiamine is safe to take even in large doses.  It's water soluble, so any extra is excreted in urine.  

Thiamine and magnesium work together, so consider supplementing with magnesium chelate, it's a bioavailable form of magnesium.  Take them at different times though.  

I had improvement in my symptoms within an hour when taking thiamine.  My symptoms continued to improve over the following days and weeks and months.  I still take extra thiamine and B Complex daily, for ten years now.  I have also taken other forms of thiamine, Allithiamine and Benfotiamine.  These forms are fat soluble and get into cells easily.  

Keep us posted on your results!  

 

[Joanna24]

4 hours ago, cristiana said:

Joanna - my Vitamin B12 was within normal range, but was low-normal, i.e. just within normal range by UK lab standards.    I felt a lot better when they were around 500, which I gather in some countries is considered low normal.  Do you know what your levels were, and what were the lab's normal parameters?

It was 516 and normal range was 200 - 1100.

[Yvonne (Vonnie) Mostat, RN]

On 1/17/2022 at 9:27 PM, Joanna24 said:

Hi,

I am curious if somebody had slurred speech, difficulty with swallowing, twitches, and face and mouth numbness as the only symptoms of celiac disease. My neurologist ordered gliadin antibodies igG test and my result was 32.8 with a normal range <15. He said I have celiac and have to start gluten free diet. I have been gluten-free for almost three weeks, but the only change I see so far is that the numbness got better. I can still feel it, but less than before. How long it takes for speech and swallowing to get better?

Joanne, I have been doing research on Gluten Ataxia of the brain. This was originally discovered in Liverpool England I believe. As most readers know I have endured major surgery on my lower bowel and subsequent revision surgery this past year which kept me from writing for some time. I will never, ever purchase anything that does not state "Gluten Free" again. I just do not want to risk what I have endured with products being contaminated by other products in the production line containing gluten. I was noticing mouth numbness, tingling in my feet and staggering, somewhat like a drunk, though I do not drink at all. Please look up Gluten Ataxia of the brain. I am going to be writing about it in the Celiac.com Spring or Summer issue. It can take a lot more than three weeks to clear the brain. Even white spots can show up on CT Scans apparently.  The article I read was most informative. You mention swallowing, that is also talked about. I assumed that the vomiting I was incurring was because of ingesting gluten. A Barium Swallow showed that I had damaged my throat, and some food or liquid was passing into my lungs. This may have accounted for the frequent pneumonias I had during the year. May I take the liberty of suggesting a Barium Swallow, done at your local hospital  to determine if you have a throat injury, There are exercises that help with the swallowing that they suggest or prescribe to reduce the swallowing issue. It was the staggering that produced such worry in me following surgery thinking I had incurred a stroke during surgery. I am glad you are picking it up quickly because the writer of the article states that someone not adhering strictly to a gluten free diet and noticing these symptoms, and ignoring them, can experience permanent damage.  Good luck Joanne. If only people realized that Celiac Disease is a legitimate serious disease and can be compared to Diabetes, Rheumatoid Arthritis, or other serious diseases and not just flippantly brush it off.

Yvonne (Vonnie) Mostat, R.N.

Writing for Celiac.com

 

[knitty kitty]

@Yvonne (Vonnie) Mostat, RN,

Have you had your B12 level checked since you started having these symptoms?  

I ask because I've had the staggering and neuropathy after surgery, and medical and dental procedures where anesthesia was used.  

Nitrous oxide used in surgery with anesthesia can deplete Vitamin B12!  The nitrogen binds irreversibly with the cobalt in B12 (Cobalamine) making the vitamin unavailable and useless.  

If a person is low in B12 to begin with, exposure to nitrogen compounds in anesthesia can cause a further depletion of B12 resulting in deficiency symptoms.  

The nitrogen stays in the body for up to eighteen months after exposure to anesthesia, continuing to deplete B12 stored in the liver.  As time passes, more B12 is inactivated and deficiency symptoms worsen.  

I've woken up with B12 deficiency symptoms after oral surgery to remove impacted wisdom teeth.  And I had it after root canals and even after an endoscopy/colonoscopy.    And the doctors failed to recognize the symptoms every time.  

Please, just to rule it out, get your B12 checked! 

P.S.  Deficiencies in Thiamine, Niacin or Vitamin C can produce variations in gait.  Remember it's rare to have a deficiency in just a single vitamin because they all work together.  

Edited January 21, 2022 by knitty kitty
Added post script

[ravenwoodglass]

You have gotten some great info on supplements. Do be sure if your doctor tests your levels that you stop the supplements a couple weeks before to get an accurate level.  Your B12 levels should be at least 500. The level changed a few years ago but many doctors still go by the 250 as the low. Sublingual B12 is best as it bypasses the damaged gut by being absorbed by your mucous membranes.

I had bad issues with both speech and swallowing before diagnosis.  The swallowing improved fairly quickly but I do still have issues with speech at times.  I went undiagnosed for a very long time so i do have a bit of permanent damage. Nothing I can't live with though. Hopefully you will heal completely but be patient with your body. It can take some time to heal.

If you do have a barium swallow make sure that it is gluten free. if it is thick and chalky it is not. The liquid will be clear and realatively thin.  Ask your doctor to order before the test to be sure they have it on hand.

The NIH has some very good articles on ataxia and a search for that and the term 'UBOs" (unidentified bright objects) will bring up more info. They are found when the antibodies attack the brain and are similiar to the lesions found with MS. A spinal tap can be used to differentiate as the debris found with MS will not be present.

I hope you heal quickly and if I repeated anything please forgive as I haven't had much time to be on the board lately.

[Eugenia Carvalho]

On 1/18/2022 at 7:19 PM, Scott Adams said:

Welcome to the forum! It can take up to 2 years for some of these symptoms to go away, possibly even longer. This category is devoted to articles on this topic:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

I have several problems related to autoimunity, I'm have already gone gluten free for a a year, but I discovered I also have intolerance to corn 2 months ago. 

My all body and brain are suffering for 45 years without proper diagnose or treatment. My liver, kidneys, thyroid, ovary, brain and muscles were very attack along the years but nowone cared, my parents included because I was like that. 

But when I realized that dairy and gluten where possibly the key, my GP doctor that's I knew a year ago said "no that's impossible" right away. 

So I started a probiotic with chinese doctor and went gluten free, when I did the biopsy I already had no lesions. But have 3 celiac genes present HLA DQ2 and DQ8 very prevalent on celiac. 

I start now to low down the antibodys that attacked my thyroid they went from 2500 to 300, I still have a long way to go but here I can get the understanding that I don't have from my family and most doctors...

 

[Joanna24]

On 1/18/2022 at 2:17 PM, knitty kitty said:

Joanna,

I took over the counter thiamine in the form Thiamine HCl (hydrochloride).  Each tablet is 100 mg.  

https://www.nowfoods.com/products/supplements/vitamin-b-1-100-mg-tablets

I took one 100mg tablet with each meal and snacks.  I also took a daily B Complex vitamin that already had thiamine in it.  Thiamine is safe to take even in large doses.  It's water soluble, so any extra is excreted in urine.  

Thiamine and magnesium work together, so consider supplementing with magnesium chelate, it's a bioavailable form of magnesium.  Take them at different times though.  

I had improvement in my symptoms within an hour when taking thiamine.  My symptoms continued to improve over the following days and weeks and months.  I still take extra thiamine and B Complex daily, for ten years now.  I have also taken other forms of thiamine, Allithiamine and Benfotiamine.  These forms are fat soluble and get into cells easily.  

Keep us posted on your results!  

 

I have been taking thiamine and B-complex for two weeks and have been on gluten free diet for five weeks. I feel like my speech improved a little, but it fluctuates. I have better and worse days and it even fluctuates during a day. it can be better in the morning then worsens during a day and gets better again. Or it can be worse in the morning and gets better later in a day. Is that fluctuating improvement in symptoms normal in the healing process or it should be more steady, meaning that my symptoms should get better over time and not go back and forth? 

[knitty kitty]

1 hour ago, Joanna24 said:

I have been taking thiamine and B-complex for two weeks and have been on gluten free diet for five weeks. I feel like my speech improved a little, but it fluctuates. I have better and worse days and it even fluctuates during a day. it can be better in the morning then worsens during a day and gets better again. Or it can be worse in the morning and gets better later in a day. Is that fluctuating improvement in symptoms normal in the healing process or it should be more steady, meaning that my symptoms should get better over time and not go back and forth? 

Joanna, I'm so glad to hear you are taking thiamine and B Complex.  

My symptoms would fluctuate based on how active I was and if I was stressed.  You use more Thiamine during activity and stress.  If I felt not up to par, I would take more thiamine.  I had to find the right amount for me.   I took 1000 mg a day of Thiamine HCl at times.  As my body healed, I could reduce that amount. 

I take thiamine at the beginning of a meal to make sure it gets absorbed.  

You can also try taking another form of thiamine called Benfotiamine which is fat soluble and helps heal the intestines. 

Allithiamine is another form of thiamine that can get into the brain easily.  You may want to try Allithiamine to help with the slurring.  I really like this Allithiamine because it helped the most with some of my neurological symptoms.

https://www.lifeextension.com/vitamins-supplements/item26106/allithiamine

 

[Yvonne (Vonnie) Mostat, RN]

Joanna, how are you doing now? You know, it takes more than three weeks to settle your body down after receiving a diagnosis of Celiac Disease.  Goodness, at one time it took 8 - 12 years before doctors clued in to celiac disease and the test needed.  I have Dermatitis Herpetiformis also and take multi-vitamins. I have been a celiac with DH for over 30 years and have taken numerous courses. In fact I am in the middle of a course on Celiac Disease right now.  When I was originally suspected of having Celiac Disease it was a Dermatologist that thought all the sores and itching that I had could be from Dermatitis Herpetiformis.. He actually telephoned to his physician friend in New York who suggested putting me on DAPSONE> It was like a miracle to me. The sores began to dissipate the first week, except for the sores in my scalp which took a little longer. The scars from that experience have of course now gone, but the two specialists said that I would likely have to take Dapsone permanently. In those days Dapsone was ordered in from India because it was only good for DH and Leprosy. The bowel does not heal in a month, even six months. I do warn you about physicians that tell you to go back on a regular diet to determine if you have Celiac Disease. That is a disaster because you are back to the beginning again. The healing that has started will be back at square one, and you do not want to get Dermatitis Herpetiformis along with the Celiac Disease. DH is still the mystery of the ages and even the new drug from Australia has stated to me over the computer that they have not found the drug to be effective in ridding the body of DH.  I hope you stick to the diet, find some wonderful stores that have a lot of gluten free foods. Fortunately I have a very patient and understanding husband who has had to go on the gluten free diet with me also. I tell him he is welcome to go out with his men friends for lunch and eat what he wants to in a restaurant, but after what I went through last year I am not going to go near foods that do not list   "DOES NOT CONTAIN GLUTEN".  IT IS JUST NOT WORTH IT. Hope all is well with you, but relax, it does take time to heal the jejeunum part of the bowel.