22 with MS from cross-contamination

[Melissa Mandrick]

When hospitalized my food was cross-contaminated with ill reason to get back at me. Board of Directors Didn't care how the nurses and lunch staff  dealt with my food. I  immediately got sick and first month after exposed lost 30 pounds. Next month my eyes muscles weakened and  became severally crossed eyed on and off. Few months felt something was off and I was right. I got gallstones. No longer have gall blabber and having it removed fix some of the problems. Started having weakness up and down arms and legs plus hands and feet. Body cold ans shaky. Could not walk when those outbursts happened. Had many tests done. One was a MRI of my brain. I have scar tissue on the back of my brain causing nerve damage well, multiple sclerosis. Plus more damage on my digestive track at times my small intestines don't compulse to move my waste. Poop And on top off all my other chronic health conditions. One day I swear gluten will kill me from others not caring. And I was told as a kid in school that can't happen to you the chances of the happening are non- existent.  

[trents]

Melissa, how can we be of help?

[Melissa Mandrick]

  On 7/30/2021 at 6:12 PM, trents said:

Melissa, how can we be of help?

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honestly for me nothing.but it unsettling knowing that celiac patients are not cared for properly/ not safe or with respect at my local hospital and school district. 

[trents]

So you just wanted to vent. That's okay, too.

[ravenwoodglass]

  On 7/30/2021 at 6:08 PM, Melissa Mandrick said:

When hospitalized my food was cross-contaminated with ill reason to get back at me. Board of Directors Didn't care how the nurses and lunch staff  dealt with my food. I  immediately got sick and first month after exposed lost 30 pounds. Next month my eyes muscles weakened and  became severally crossed eyed on and off. Few months felt something was off and I was right. I got gallstones. No longer have gall blabber and having it removed fix some of the problems. Started having weakness up and down arms and legs plus hands and feet. Body cold ans shaky. Could not walk when those outbursts happened. Had many tests done. One was a MRI of my brain. I have scar tissue on the back of my brain causing nerve damage well, multiple sclerosis. Plus more damage on my digestive track at times my small intestines don't compulse to move my waste. Poop And on top off all my other chronic health conditions. One day I swear gluten will kill me from others not caring. And I was told as a kid in school that can't happen to you the chances of the happening are non- existent.  

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Sorry you are having such a hard time. Did they do a spinal tap to confirm that the lesions they found were MS?  They thought I had MS also but a spinal tap was negative and it turned out to be impact from gluten that was causing symptoms and the brain lesions they found. While the spinal tap is not a fun procedure you may want to have it done. If the tap is clear then be very, very careful about avoiding gluten as even a tiny amount of CC can prolong the time it takes you to heal. You may find sublingual b12 to be helpful as well as a good high dose multi.

The ignorance in the medical world to celiac and downplaying of symptoms or just throwing lots of meds at us is IMHO disgraceful.

Let us know if there is anything we can do to help you be as gluten free as needed. Gluten is sneaky but you are in the right place to get the knowledge you need to be safe.

[AlwaysLearning]

The one time I was in the hospital after going gluten free, I had to check myself out early so that I could get myself something safe to eat. They brought me a tray of food that was supposedly gluten free, but the only thing on it that was actually safe was a sealed container of apple juice. But my hospitalization was years after I went gluten free so I already had enough experience under my belt to know that ingredients like "natural flavors" are potential dangers or to understand the risk of a shared kitchen.

But if you don't have the option of leaving the hospital, there are things that you could consume that should be lower risk, like rice or vegetables that are not spiced or flavored. The main risk there is cross contamination of a shared kitchen. 

You can never trust others to make food decisions for you. You have to be educated about potential risks and make your own decisions. I have often thought that I have to be super careful to never get arrested because even one night in jail would be a nightmare for me.

I don't know anything about MS, but you may want to research gluten ataxia. From my limited understanding of each, there is a risk of those who have gluten ataxia of being misdiagnosed as having MS.

[Melissa Mandrick]

  On 8/2/2021 at 3:32 AM, AlwaysLearning said:

The one time I was in the hospital after going gluten free, I had to check myself out early so that I could get myself something safe to eat. They brought me a tray of food that was supposedly gluten free, but the only thing on it that was actually safe was a sealed container of apple juice. But my hospitalization was years after I went gluten free so I already had enough experience under my belt to know that ingredients like "natural flavors" are potential dangers or to understand the risk of a shared kitchen.

But if you don't have the option of leaving the hospital, there are things that you could consume that should be lower risk, like rice or vegetables that are not spiced or flavored. The main risk there is cross contamination of a shared kitchen. 

You can never trust others to make food decisions for you. You have to be educated about potential risks and make your own decisions. I have often thought that I have to be super careful to never get arrested because even one night in jail would be a nightmare for me.

I don't know anything about MS, but you may want to research gluten ataxia. From my limited understanding of each, there is a risk of those who have gluten ataxia of being misdiagnosed as having MS.

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It has been 2 years and 2 months since being glutened my condition is progressing on gluten free diet before the cross-contamination. Not located in cerebellum but frontal lobe near crown. With gluten ataxia I read the symptoms It makes matches but I'm being my thyroid check next month for grave's disease It was my thyroid doctor as a teenager that suggest that I had a gluten issue and she was right never thyroid stabilized on gluten free diet so no need to take meds. But with the reoccurring issue have triggered my thyroid. thyroid Still unstable for 2 years. I might have both celiac and graves disease this time around I would needed treated with meds for graves. Or all 3. MY SYMPTOMS Hands and feet are ice cold so most likely permanent nerve damage.  Psoriasis, Double vision got surgery back in november. Eyes are better. my symptoms matched perfectly with grave's disease. Convulsions. Swelling of the face near eyes and check.

Edited February 20, 2022 by Melissa Mandrick
got carried away and started writing more than I should have venting.

[knitty kitty]

@Melissa Mandrick,

Hi.  

 

 

  On 7/30/2021 at 6:08 PM, Melissa Mandrick said:

 I  immediately got sick and first month after exposed lost 30 pounds.

Sudden, unintended weight loss is a symptom of Thiamine deficiency.   This happened to me.

Next month my eyes muscles weakened and  became severally crossed eyed on and off.

A stage of thiamine deficiency is called Wernicke's Encephalopathy which is....

 "...classically characterized by a triad of ocular dysfunction, ataxia, and altered mental status."

"Neuro-ophthalmic Manifestations of Wernicke Encephalopathy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335288/

Crossed eyes can be a symptom of Thiamine deficiency.

And...

"Visual loss and optic nerve head swelling in thiamine deficiency without prolonged dietary deficiency"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/

This happened to me.  I'm vision challenged and get ophthalmic migraines from computer screens.  My optic nerve shuts down causing my vision to go grey with long periods of looking at computer screens and digital flat screen televisions and mobile phone screens.  I wish I had a Cathode Ray Tube television.  

I got gallstones. No longer have gall blabber and having it removed fix some of the problems.

"Nonalcoholic Wernicke's Encephalopathy Associated with Unintentional Weight Loss, Cholecystectomy, and Intractable Vomiting: The Role of Dual Thiamine and Corticosteroid Therapy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3970253/

I had to have my gallbladder removed (cholecystectomy).

Started having weakness up and down arms and legs plus hands and feet.

This is peripheral neuropathy and muscle weakness that happens in thiamine deficiency.  I had this.

Body cold ans shaky.

I got cold and shaky, too.

"Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat"

https://pubmed.ncbi.nlm.nih.gov/9804367/

"...hypothermia and disruption of the diurnal rhythm of body temperature can be reversed by restoration of adequate thiamine levels and are related to biochemical and physiological disturbances rather than gross structural changes."

I've experienced this.

Could not walk when those outbursts happened.

Ataxia happens in thiamine deficiency.  I walked like I was drunk.

 One was a MRI of my brain. I have scar tissue on the back of my brain causing nerve damage well, multiple sclerosis.  

Not located in cerebellum but frontal lobe near crown.

Same places as thiamine deficiency causes white spots.

"Magnetic resonance imaging in the assessment of brain involvement in alcoholic and nonalcoholic Wernicke’s encephalopathy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5334504/

 

Plus more damage on my digestive track at times my small intestines don't compulse to move my waste. 

This is called Gastroparesis.  I had this.

"Idiopathic gastroparesis is associated with a multiplicity of severe dietary deficiencies"

https://pubmed.ncbi.nlm.nih.gov/2012043/

And...

"Thiamine and Gastroparesis"

https://www.hormonesmatter.com/tag/thiamine-gastroparesis/

And...

"Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking"

https://pubmed.ncbi.nlm.nih.gov/31543793/

"Thiamine deficiency remains underdiagnosed and should be considered in patients who develop unexplained gastroparesis or autonomic nervous failure of the digestive system, even in the nonalcoholic population."

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  On 2/20/2022 at 9:27 PM, Melissa Mandrick said:

Convulsions.

"Epileptic manifestations and vitamin B1 deficiency"

https://pubmed.ncbi.nlm.nih.gov/2044623/

"It appears that thiamine deficiency may provoke epileptic phenomena in those patients who have subclinical predisposition for seizures."

I had absence seizures.

 

Swelling of the face near eyes and check.

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

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

"...characterized by edema of the legs, trunk, and face..."

I had edema.

Thyroid

"Thyrotoxicosis Associated Wernicke’s Encephalopathy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2173917/

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And some more information about thiamine deficiency mimicking other diseases because doctors don't recognize thiamine deficiency symptoms.

"Thiamine deficiency unrelated to alcohol consumption in high‐income countries: a literature review"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451800/

And....

"Hiding in Plain Sight: Modern Thiamine Deficiency"

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

And...

"Vitamin B1 Intake in Multiple Sclerosis Patients and its Impact on Depression Presence: A Pilot Study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551277/

And...

"Neuropathy and Multiple Sclerosis Treated with Biotin, Thiamine, and Magnesium"

https://www.hormonesmatter.com/neuropathy-multiple-sclerosis-treated-biotin-thiamine-magnesium/

And...

"Wernicke’s encephalopathy as a mimicker of a Brainstem Relapse in a Multiple Sclerosis Patient"

https://n.neurology.org/content/84/14_Supplement/P1.141

And...

"Vitamins are Indeed Vital Amines: A Discussion of 3 Deficiencies With Neurologic Manifestations"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544767/

And...

"Nutrition and Psoriasis"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7432353/

And...

I had a lot of severe vitamin and mineral deficiencies caused by undiagnosed Celiac Disease...

My doctors didn't recognize the deficiency symptoms and wrote me off as a hypochondriac. 

My doctors didn't try to find the reason my health was deteriorating.  They simply covered the symptoms by prescribing pharmaceuticals. 

Please get tested for vitamin and mineral deficiencies.  If we give our bodies the nutrients it needs, we can improve our health.  

Hope this helps!

Keep us posted on your progress!

 

[Wheatwacked]

  On 2/20/2022 at 9:27 PM, Melissa Mandrick said:

celiac and graves disease

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After two plus years of GFD your gut should be fairly well healed making malabsorption less likely and deficiencies from your GFD diet more likely.

Iodine is affected by Celiac Disease (absorbed in small intestine) and low iodine intake is a cause of Graves Disease. You may be iodine deficient that started with your Celiac diagnosis and has just never been addressed. Only a urine test can tell your iodine intake status but is rarely done. The daily intake in Americans has dropped 50% since 1970, though as a population it is considered sufficient. Back then bread was the major source, but they stopped using iodate as a dough conditioner in the US in the 70's (hence the drop in population status). There has also been a suspicious increase in thyroid problems since then that is rarely mentioned. RDA is 150 mcg to 1100 mcg upper limit. I eat 1 -3 (42-120 mcg) sheets of Nori with my morning coffee, usually have a glass or more of Pasture fed milk (85 mcg) and eat around 3 three jumbo eggs a day. I have noticed a distinct improvement in muscle tone. I had burning cold feet that improved to the point of just cold toes. My TSH is perfect. I don't know what it was before, but I had zero strength.https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

  On 2/21/2022 at 4:53 PM, knitty kitty said:

more information about thiamine deficiency mimicking other diseases

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I recently increased my B1 intake from 6 mg (500% RDA) to 500 mg a day and where I used to turn on the heat at 78 degrees F I am now Ok down to 71 degrees. Feet are a little better. Sometimes even too hot.

Most people in the US do not eat enough choline, the source of acetylcholine (nerve transmission) and 90% of the mitochondria cell membrane is phosphatidyl choline. Also processes fat in the liver, works with folate to control homocysteine (cardiovascular disease marker) and together with folate reduces neural tube defects in developing embryos. There are many antibiotics that damage the mitochondria. 

"Medication-induced mitochondrial damage and disease";  https://pubmed.ncbi.nlm.nih.gov/18626887/ 

   https://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/ 

Liver, eggs and red meat are the best sources. The RDA is the equivalent of a 15-ounce steak, or 4 large eggs or 10 cups of cooked broccoli every day. You might find 480 to 840 mg of phosphatidyl choline supplement helps your symptoms.    https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

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Lipid Replacement Therapy: a natural medicine approach to replacing damaged lipids in cellular membranes and organelles and restoring function   https://pubmed.ncbi.nlm.nih.gov/24269541/

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[AlwaysLearning]

For me, the cold hands and feet, a problem I had for decades, was all from gluten. It went away completely within the first two weeks of going gluten free and never came back.

My graves disease is triggered by mold and mildew. If I can keep everything uncontaminated, my thyroid calms down and is not a problem.