Lots of neurological symptoms

[Pdawg]

Hello, I’m 45 year old male 

I found out 2 weeks ago I’m celiac …. After 2 years of neurological issues and a solid year of diarrhea went in for a gastro … along with damage to my small intestine they also diagnosed me with Barrett’s esophagus and also inflammation in my stomach 

weird symptoms I’ve encountered 

-weight gain -60 lbs 

-twitching throughout my body

-joint stiffness  

-weakness (perceived) in limbs 

-chronic diarrhea -brain fog etc 

my father passed of ALS 3 years ago (bulber) so you can see why these symptoms are troubling 

over the 2 years I had multiple blood tests that showed  my nutrient levels were not off and essentially normal ….

1) is it possible to have these symptoms from celiac regardless of nutrient levels ? 

2) does anyone else have these symptoms ? 

3) am I creating false hope that these symptoms may in fact not be caused by gluten?

4) I read gluten exposures can effect the entire system would this account for the deep aches I’m feeling in my limbs (almost feels like growing pains) 

 

thanks so much for your time , hoping to connect with some people that are going through the same type of symptoms 

regards,

PDawg

[trents]

Welcome to the forum, PDawg!

On what basis was a celiac diagnosis arrived at? Was a celiac blood antibody panel done? How did the medical experts arrive at a celiac diagnosis vs. NCGS (Non Celiac Gluten Sensitivity)? Celiac disease and NCGS share many of the same symptoms. The difference between the two is that NCGS does not cause damage to the small bowel villous lining as does celiac disease. And NCGS is 10x more common than celiac disease.

Edited May 5, 2023 by trents

[Pdawg]

1 minute ago, trents said:

Welcome to the forum, PDawg!

On what basis was a celiac diagnosis arrived at? Was a celiac blood antibody panel done? How did the medical experts arrive at a celiac diagnosis vs. NCGS (Non Celiac Gluten Sensitivity)? Celiac disease and NCGS share many of the same symptoms. The difference between the two is that NCGS does not cause damage to the small bowel villous lining as does celiac disease. And NCGS is 10x more common than celiac disease.

Thanks for the welcome  ! Had a biopsy that stated damage to the small intestine was indicative of Celiac and also Barretts esophagus. My GP called me and referred me to a dietician before even talking to the doctor that did the biopsy. They was told by my GP I had celiacs

I was under the impression biopsy was the gold standard for diagnosis ??

no blood tests were taken but from the sounds of it I can look forward to many more scopes in the near future 

[OfcVal]

Have you been tested for thyroid disease? Some of the symptoms you mentioned such as the weight gain and muscle weakness are what I experience when my Synthroid (hypothyroidism medication) needs to adjusted.  Autoimmune diseases sometimes seem to multiply when you are diagnosed with one.  Hope this helps.  

[trents]

My apologies! I misread your first post to say there was no damage to the small bowel villi!

Normally, the first stage of diagnosis for celiac disease is to check for certain antibodies that are produced by inflammation in the small bowel. If the antibody testing throws some positives then they move on to the second stage, the endoscopy with biopsy, which as you stated, is the gold standard for celiac diagnosis.

Indeed, it is unusual to not have developed nutrient deficiencies while living with damaged SB villi. My only explanation there would be that you caught the disease at a relatively early stage before your nutrient stores became completed. Typically, people live with celiac disease 10 years or more before ever getting diagnosed. Some experts feel that NCGS is a precursor to celiac disease so perhaps your symptoms began during the NCGS phase and the villous damage is more recent.

Have you begun the gluten free diet yet? The proof is in the pudding. If your symptoms improve on a gluten free diet then perhaps you have found the key to the numerous health issues your experience. Give it a few months,  though. Learning to eat truly gluten free is more challenging than most realize at the outset. Studies have shown that most people who eat believe they are eating gluten free are actually eating lower gluten rather than free. There typically is a significant learning curve involved with it. It's especially challenging when you eat out. This may help:

 

[Wheatwacked]

5 hours ago, Pdawg said:

• 1) is it possible to have these symptoms from celiac regardless of nutrient levels ? 
• 2) does anyone else have these symptoms ? 
• 3) am I creating false hope that these symptoms may in fact not be caused by gluten?
• 4) I read gluten exposures can effect the entire system would this account for the deep aches I’m feeling in my limbs (almost feels like growing pains)

Short answers: Yes, yes, yes, yes.

1. Most of the nutrient tested only indicate plasma levels, which is tightly controlled.
   1. For example: Cell potassium concentration is around 140 mmol/L, whereas the normal range for plasma potassium varies between 3.2 and 6.2 mmol/L depending on age. Blood level may be fine but still not enough cellular potassium. It is a worldwide health concern.
   2. Vitamin D sufficiency is 29 ng/ml ( = 72 nmol/L). It is based soley on preventing rickets. Our homeostasis level is actually 80 ng/ml ( = 200 nmole/L). Imagine a factory with 100 work stations operating with only 29 employees.  Something won't get done.
   3. Less than 10% on a Western Diet eat enough choline. It can be one of the deficiencies causing your diarrhea (lipid metabolism , gall bladder and liver enzymes), brain fog (acetylcholine), weakness (mitochonrial cell membrane).
   4. White spots on the brain, almost identical to those found in Epilepsy caused by Celiac have been documented.
   5. Thiamine deficiency can cause many of your symptoms. Supplement and evaluate because the general medical belief is that it cannot be.
2. I counted 19 symptoms in myself that improved with gluten free diet. The only one of yours I didn't have was ALS in your father; but both my father and older brother died after intestinal surgery of sepsis because the stitches leaked.
3. What are the odds of you having five or more different diseases at the same time.  As trents stated: The proof is in the pudding. Start the diet, take lots of vitamin D, get lots of Choline (liver, eggs, meat, or supplement).
4. Check out this list: What Are the Symptoms of Celiac Disease?

• Quote

   

  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
  • More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
  • Surge of benefits of vitamin D

   

   

 

Edited May 5, 2023 by Wheatwacked

[DALTE04]

You’re not alone. My aunt and I both have Celiacs and get muscle spasms and twitches. I also get tingling and numbness and heart palpitations. However, I also suffered from oxalate overload, which has overlapping symptoms. Check out Sally K Norton’s website and the resources posted here about oxalates. It may be not be your issue, but it may also be of great help. I would also recommend getting a celiac panel blood test that includes TTG-IGA, DGP-IGA, TTG-IGG, and DGP-IGG. My last labs were within normal except the DGP-IGG. Kaiser only tests for the IGA’s.  Apparently, the antibodies represented in the DGP labs are more likely to cause neurological symptoms. Keep in mind that it can takes a while to see results with the neurological symptoms. They may get better rather quickly, but may take a long time to resolve. Also, any time you’re glutened, you set yourself back. I would just eat at home and eat whole foods as much as possible. Good luck!

[Rogol72]

9 hours ago, Wheatwacked said:

Short answers: Yes, yes, yes, yes.

1. Most of the nutrient tested only indicate plasma levels, which is tightly controlled.
   1. For example: Cell potassium concentration is around 140 mmol/L, whereas the normal range for plasma potassium varies between 3.2 and 6.2 mmol/L depending on age. Blood level may be fine but still not enough cellular potassium. It is a worldwide health concern.
   2. Vitamin D sufficiency is 29 ng/ml ( = 72 nmol/L). It is based soley on preventing rickets. Our homeostasis level is actually 80 ng/ml ( = 200 nmole/L). Imagine a factory with 100 work stations operating with only 29 employees.  Something won't get done.
   3. Less than 10% on a Western Diet eat enough choline. It can be one of the deficiencies causing your diarrhea (lipid metabolism , gall bladder and liver enzymes), brain fog (acetylcholine), weakness (mitochonrial cell membrane).
   4. White spots on the brain, almost identical to those found in Epilepsy caused by Celiac have been documented.
   5. Thiamine deficiency can cause many of your symptoms. Supplement and evaluate because the general medical belief is that it cannot be.

I can confirm the white spots on the brain, little dots. Apparently also common in migraine sufferers. Had an MRI several years ago for what was thought to be a blood clot in the cerebellum, turned out to be a cyst. Had a repeat MRI a year later, no changes thankfully. The neurologist said the white spots were from my UC, but it is probably from UC and celiac disease.

[yuluyouyue]

I have been having twitches and tension forever. I chalk it up to anxiety. Could be also something celiac related. I also have white spots on my brain. But they seem pretty common. I am fine otherwise so I don't worry. 

[Russ H]

It is very common for adults to have neurological symptoms on diagnosis of coeliac disease. Most people show clinical improvement by a year, so be patient and adhere to a strict gluten-free diet. Take a good multivitamin for the first year at least.

[Sof]

I had permanent pain in my knees before bed time and all day if I had not sleep 8 hours all my life, since I can remember, until I completely quit gluten. I also had postural hypotension and irregular palpitations for a whole year before completely quitting it. 
 

You will heal and you will feel so good without gluten that it will be completely worth it :))

[HerborisTin]

Hello, celiac disease , ALS, neurological symptoms is a red flag for me. You probably are severely B12 deficient .the absorption metabolism Of B12 requires several factors and steps beginning in the stomach (intrinsic factor, parietal cells) and going through the small intestines. Lack of B12  can be devastating;. In order to stop the neurological damage and reverse it you need injections with B12.

I myself have a B12 deficiency diagnosed in 2000 and never treated as it should have been and got worse over the years, tinnitus, deaf on 1 ear, constipation due to paralysed intestines, excruciating nerve pain, depression., ischemic colitis..... I self diagnosed with celiac because of tpossing the gene for celiac disease  and the reaction of my body to gluten, lifelong sufferer of IBS.

This is a very informative side :

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

https://b12-institute.nl/en/causes-b12-deficiency/

Best of luck!

[Wheatwacked]

Welcome to the forum Herboris Tin.

Low vitamin D causes depression.  Thiamine deficiency.

Interesting, ALS was one of the first diseases to be documented that gluten free diet can improve.  Of course, the mainstream medical community accused them of quackery.  Here is a list of essential vitamins and minerals followed by an article explaining each ones functions. They are not optional. Each has a function and they are so important many overlap.

VitaminRDA Upper

 

 

 

[knitty kitty]

Muscle spasms, twitches, POTS (postural orthostatic tachycardia syndrome), tachycardia, deafness, Gastroparesis, problems with oxalates, and white spots on the brain are all indicative of Thiamine Deficiency.

Read for yourselves, please.  

Marginally Insufficient Thiamine Intake and Oxalates

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

And...

Absorption of glyoxylate and oxalate in thiamine and pyridoxine deficient rat intestine

https://pubmed.ncbi.nlm.nih.gov/3947375/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

Nutrient Effects on Motor Neurons and the Risk of Amyotrophic Lateral Sclerosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8622539/

Edited June 5, 2023 by knitty kitty
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[caseylarae]

That sounds really scary, I'm sorry you're going through all this. I had really similar neurological symptoms before I stopped eating wheat, and like others have said it's very common to develop a second autoimmune disease if you have one already. For me it was rheumatoid arthritis + celiac, but for you it could be some other combination.

There are a number of things that can cause these symptoms, and I wouldn't jump straight to ALS or make any assumptions; a lot of neurological conditions look really similar in terms of symptoms. If I were in your position I would try to see a neurologist to rule out neurological issues like ALS, parkinsons, and multiple sclerosis. A neurologist can get you in for a brain MRI and some movement tests which are very non-invasive and conclusive. It could give you a lot of peace of mind. You can also see a rheumatologist to check your rheumatoid factor and see if RA might be what's causing your twitches and joint stiffness. That would be just a blood draw and movement tests, again very non-invasive but could give you so much peace of mind and/or a diagnosis. As others have said, getting your thyroid levels checked is also a great idea as Hashimoto's disease cause some of these symptoms (weight gain is really common with Hashimoto's).

Hope that's helpful and I hope you get some answers soon!