Peripheral Neuropathy & Suddenly Allergic to EVERYTHING

[GFBecki]

Hey Everyone! I’m pretty stressed and anxious about my healing and praying those of you more experienced might be able to help. A quick back story, I had my 2nd baby the end of Feb and became horribly ill at 6 weeks postpartum. Started with terrible abdominal pain every time I ate and slowly turned into numbness & tingling on the left side of my body. Also had all the typical GI symptoms, brain fog, exhaustion etc.

After dozens of doctors appointments and being hospitalized I was finally diagnosed with Celiac on 6/4 by blood test and symptoms. Around the same time I started having scary allergic reactions to all the foods I was eating daily without issues. Some caused instant stomach pain, others made my face numb and throat swell, some made my neuropathy worse. The tests my GI ran showed food sensitivities to Soy, corn, wheat, shellfish, peanuts, treenuts, sesame & eggs however the allergy tests ran by my allergist showed zero food allergies (except celiac).

I am 100% gluten free including my whole house, I don’t eat out and am following a strict AIP diet to try and heal my leaky gut per my Functional docs recommendation. I also don’t take any medication or vitamins as I was reacting to everything. I started to see some improvements the first few weeks of my diet however the past 2 weeks I’ve been having horrible allergy like symptoms to almost everything. I had one sip of gluten-free green tea for the first time and my face felt like it was on fire, I had this intense pressure in my face and it went tingly numb for hours. This has been happening daily. I feel like I can’t even think or see straight, I have occasional ringing in my ears, my GI symptoms are slowly regressing and my neuropathy has gotten worse again. I’m living off organic grass fed meat, poultry, steamed veggies (minus nightshades) and minimal fruit. I also get weekly B vitamin shots and biweekly multivitamin bags.

I’m wondering if this could be a histamine issue? I have been eating tons of avocados, lemons and limes, maybe I just built up too many histamines or don’t have the enzymes to break them down properly? Anyone else have experience like this? I feel like I’m losing my mind and literally have almost no food I can eat. Plus I’m nursing so I’m starving all the time. Feeling so discouraged and scared of food :( Thanks for reading if you made it this far!

[BeCeliacSavvy]

I can’t answer your question, but I’ve started looking into this and a couple of sites I recommend are https://healinghistamine.com/histamine-in-food-lists/ and http://www.jessicamaddenmd.com/JESS-Blog/January-2014/Mast-Cell-Activation-Syndrome-Madness

[AmyElizabeth]

Hi. I'm sorry you are having such a difficult time with foods. I love avocados, but can no longer eat them, as they cause congestion for me. I don't eat nightshades either. I'm off of all grain, even corn. I'm having diverticulitis/possible celiac issues right now. I had been on a gluten free diet for about 8-9 years because of inflammation in my body, but now it may be celiac or maybe celiac all  along. Lately I've had a little gluten and am having very painful symptoms. I was originally on the GAPS diet (Gut and Psychology Syndrome) to clean out then add foods back slowly. On that diet you eat a lot of bone broth, which I may have to go back to square one to heal my gut again. The author is a doctor, Natasha Campbell-McBride and she recommends fermented foods, probiotics, whole foods, etc. I used that diet to clear out (lots of bone broth!) I have also used the Body Ecology Diet by Donna Gates. Have you thought about candida being a problem? I hope this information will help heal those food sensitivities. God bless you as you journey to health and wholeness.

[Ennis-TX]

Few thoughts, it could be a histamine issues look at a lower histamine diet and try taking some antihistamines to see if it minimizes reactions. Lemons, Limes, and Egg whites are a histamine liberator as are several other foods that make make allergies worse. http://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

It could be your leaky gut issues causing even safe protein to go where they are not supposed to and trigger reactions.

If you were bitten by a tick or have had Lyme you can develop allergies to red meats, IE that grass fed meat could be triggering everything even on a delayed basis amplified by certain other foods acting as histamine liberators or catalyst.

There is a kind of Oral Allergy Syndrome you can read up on that can cause reactions to odd things, mostly things contaminated with pollen like fresh veggies, fruits, etc.....some people find washing, peeling and stewing everything heavily til mush makes it safer.

My peripheral neuropathy was impoved with blends of 2 liquid b vitamin blends, magnesium, bilberry, and a few other things....past few years it has gone from being unable to feel pain cutting myself while cooking or heat taking a hot cookie tray out of the oven bare handed. To feeling heat sometimes from the outside of a coffee mug, and actually being able to tell when I cut myself.

Link of food issues to read over for a bit of insight.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

Oh and always keep a food diary, record what you eat, season, cook, and reactions with time stamps to get a idea of patterns and triggers.
 

[Ffinley]

I was diagnosed in 2012 with idiopathic small fiber peripheral neuropathy.  The disease had been a problem for 20 years until I finally found the right neurologist to diagnose the problem.  It was in late 2012 that I began to notice sensitivities to common foods that I had been eating all of my life.  I’ve tested negative for celiac.  The doctors were dumbfounded and referred me to see a naturopath.  My naturopath diagnosed it as histamine reactions in my gut all the way through passing the stool.  I found that Benadryl seems to work best for me at reducing the symptoms, but far from a cure.  Foods can cause severe, painful bowel movements, fatigue and sleepiness that put me out like a sedative sometimes as long as 24 hours.  It causes pain as though I hadn’t taken my Lyrica, bupronorphine transdermal patch, and Vicodin.  In almost every episode after eating the pain doesn’t respond to the Vicodin.  I seem to tolerate sour dough bread, but react severely to any other kind of bread.  I can eat potatoes boiled, baked, etc., but not plain potato chips (potatoes, oil, and salt).  I follow a low FODMAP diet, but I am even reactive to foods listed as low FODMAP diet.  I’m okay with snack size snickers and Coca-Cola made with cane sugar.  I try eating organic whenever possible.  I’m reactive to the smoke generated from my Treager grill (apple and cherry wood chips).  No garlic, mushrooms, onions, fatty meats, pork, strawberries, corn (including and especially corn chips), peas, carrots.  I guess it would be easier to list what I am able to eat and exclude everything else.  My doctors want to run all these ridiculous tests rather than refer me to GI and Allergy clinics.  They don’t listen to what I am telling them because my case is so far outside the box.  So they try to do things that they are familiar with, like running ridiculous tests, to make themselves feel like they are doing something.  I take a regimen of 34 pills combined in a day.  It includes things like Lyrica and cymbalta for pain, supplements, vitamins, meds for my cholesterol and high blood pressure caused by the other Rx meds.  
 

My symptoms (pain, relentless pain in nearly every part of my body) have continued to worsen since 2012 at a faster pace than the medications can treat.  I finally feel like I’m making some progress with my pain management doctors.  I’ve finally gotten them to send referrals to both GI and Allergy specialists.  However, I have to meet with them each month to justify renewing my pain management prescriptions and endure their lectures and attempts to talk me out of taking some because it has a risk of conflicting with the Vicodin.  It’s interesting though, they don’t seem to care about the bupronorphine transdermal patch which is 30x more powerful than morphine.

Don’t give up!  If one doctor isn’t listening, then go to a different doctor.  Do your own research on the internet.  Question your doctors until you get an answer that you’re satisfied with.  This past week has been bad.  In bed for seven days.  Either asleep or fatigued and in pain.  Something needs to change soon for the better.  I can’t do this much longer.  The prognosis is:  there is no cure.  It will always get worse.  It will never get better.  
If one of my dogs were in this much pain each and every day, 24 hours a day.  I would have put them down a long time ago.  It’s about quality of life and that is totally gone for me.  I’m on full disability from Social Security.  I lost my business because I was too sick to run it.

there is no cure.  It will never get better.  It will only get worse.

Take care and keep pushing for answers for as long as you can.  Never forget that this is about YOUR quality of life.

[Scott Adams]

@Ffinley Welcome to the forum!

You mentioned that your celiac disease test was negative. Do you still have the results? It would be great if you could share those with us. I ask because it's possible that you may have gluten sensitivity without celiac disease, a condition referred to a non-celiac wheat sensitivity, as well as other names. Your antibodies for gliadin (gluten) may have been elevated, but not enough to call it celiac disease.

Also, you may want to see some of the articles in this category, which cover gluten-induced neuropathy:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[Ffinley]

I get that this forum is about Celiac and gluten.  Even if I tested positive for Celiac, it doesn’t explain the histamine reactions to the dozens of foods and spices which have nothing to do with gluten.  Strawberries?  Onions?  Garlic?  Corn?  Pork?  Peas, carrots, etc etc etc.  I have massive reactions to the smoke produced from burning apple and cherry wood pellets in my smoker.  
There is a study published by a GI specialist in Brazil.  He noticed there were a lot of patients who were diagnosed with IBS who also had some type of neuropathy.

Doctors in the US are just now figuring this out for themselves.  Peripheral neuropathy refers to the peripheral nervous system which includes everything except for the brain and spine.  So these small nerve fibers can be found throughout the body everywhere except for the brain and spine.  Once I figured that out I started to really understand why I hurt where I was hurting and why I became sensitive to everyday foods and why Benadryl helped mitigate the histamine reaction taking place in my body.  
The small nerve fibers in the digestive system are damaged by the neuropathy.  Then I eat and that food aggravates those damaged nerves which then kick off the histamines and the body takes over to try and deal with it.  The added problem is there is a rebound effect and those same damaged nerves cause the IBS issues.  I’ve been able to link my constipation to neuropathy pain flare ups causing excruciating body pain.  Then as soon as I have a bowel movement there is a huge sense of relief and all the neuropathy pain suddenly goes away within a few minutes.

I am able to induce migraine headaches by eating oranges.  Oranges!!!  I spent over 11 hours in the ER getting examined, CT scanned with and without contrast, IVs, etc.  even the spinal tap was inconclusive.  It took me an entire year to figure it out the next time I ate a bunch of mandarin oranges.

I feel for all the people who suffer from a neuropathy.  Sometimes it is easily diagnosed due to alcohol or illegal drugs, or drugs prescribed by a doctor, or diabetes, etc etc etc.  sometimes it isn’t as simple as pointing to a single cause when it involves nearly every food in someone’s diet.  Gluten or not.

[knitty kitty]

Ffinley,

You poor thing!  My heart goes out to you.  I suffered from terrible neuropathy.  My doctors blew me off as hypochondriac, and I lost my livelihood, too.  I found answers....

Thiamine deficiency caused by prescription medications... 

"Drug–nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3)"

https://academic.oup.com/ajcn/article/111/1/110/5637679

Are any of the 32 prescription medications you are taking interfering with your thiamine?

I was taking two or three prescriptions that precipitated a severe thiamine deficiency.  Looking back, I believe I had been suffering from a subclinical thiamine deficiency for years, but the medications I was given to treat the accumulating  symptoms of health problems caused by thiamine deficiency pushed my body over the edge and a severe thiamine deficiency manifested which was misdiagnosed and dismissed as hypochondria.   Doctors don't recognize Wernicke's Encephalopathy outside of alcoholism.  

 

Thiamine deficiency caused by high calorie malnutrition...

You need 0.5 mg per 1000 kcal.  A diet high in carbohydrates requires more thiamine to process that food and turn it into energy and enzymes so your body can function properly.  

Have you been keeping a written record of your food intake?  My "food/mood/poo'd" journal helped me become more aware of problematic foods and carbohydrate to protein (thiamine) intake.  I tried several diets (the FodMap diet didn't help me either).  I noticed the most improvement on the Autoimmune Paleo diet.  The AIP diet is very low carb, so as I wasn't wasting thiamine on processing carbohydrates, more thiamine was available for body function needs.  I also started high dose Thiamine supplementation to my correct deficiency.

See, when there's a deficiency in thiamine, the transporters that carry thiamine into the cells malfunction and quit working.  The only way to get them working again is to saturate the system with thiamine so thiamine can ...um, storm the gates and get inside cells anyway.  So, high dose thiamine...

 

"Thiamine transporter 2 is involved in high glucose-induced damage and altered thiamine availability in cell models of diabetic retinopathy"

https://pubmed.ncbi.nlm.nih.gov/31726874/

And...

"Vitamin Therapy Paradox: Getting Worse before Getting Better"

http://www.hormonesmatter.com/vitamin-therapy-paradox/

And...

"Thiamine and magnesium deficiencies: keys to disease"

https://pubmed.ncbi.nlm.nih.gov/25542071/

Yep, thiamine and magnesium work together.  Got to supplement both.

And...

A Review of the Biochemistry, Metabolism and Clinical Benefits of Thiamin(e) and Its Derivatives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1375232/#!po=77.9412

 

High dose Thiamine is safe.  There's no toxicity level for thiamine.  It's water soluble.  It is beneficial to increase or decrease dosage slowly.

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

Thiamine is amazing.  Thiamine helps cells function properly.  In my research, I found that... 

Thiamine deficiency makes mast cells degranulate! 

Yes, seems mast cells can't hold their wad without enough Thiamine.  

"Mast cell interactions with the nervous system: relationship to mechanisms of disease"

https://pubmed.ncbi.nlm.nih.gov/9184654/

"...in thiamine deficiency, increased histamine levels have been reported in the rat thalamus (79) and are associated with cell death and proliferation as well as mast cell degranulation (Powell and Langlais, unpublished observations)."

And...

"Nutritional Neuropathies"

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

Thiamine is used in ".....myelin sheath maintenance. Only about 20 days of thiamine are stored in the body, and thiamine deficiency can start to manifest in as little as three weeks."

While my thiamine deficiency was worsening, I became reactive to more foods and more easily reactive to less and less food stimulus.  I reacted to things I had previously eaten without a problem.  I reacted to perfumes, scented anything, scented cat litter, laundry soap, deodorant spray, dryer sheets, cleaning supplies.

Once I started supplementing with high dose Thiamine, everything changed.  I could eat more foods again because the mast cells quit flaring, the peripheral neuropathy improved, my health improved, I felt better.  I was able to get off all prescription medications. The difference was like night and day.  Some improvements were felt immediately, some symptoms have taken longer to resolve, but the neuropathy is definitely improved. 

Of course, single vitamin deficiencies are rare. Usually there are vitamin deficiencies across all the eight essential B vitamins because they are all interdependent on each other to work properly.  So, I supplemented all the B vitamins and implemented high dose thiamine in addition to magnesium and iron.

Here are some more articles on nutritional neuropathy....

"Peripheral Neuropathy Due to Vitamin Deficiency, Toxins, and Medications"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

And...

"Histamine Intolerance: The Current State of the Art"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/#!po=3.08219

And...

"The Differential Diagnosis of Food Intolerance"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695393/#!po=3.97727

And...

"Food Intolerances"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6682924/#!po=17.1569

And...

"Adverse reactions to the sulphite additives"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017440/

 

I couldn't tolerate Sulfites at all when I was thiamine deficient because thiamine is needed to process out those Sulfites!  And Sulfites make mast cells degranulate.  

Sulfites are produced in the wood smoker you are using.  Sulfites can be in foods, medications, perfumes, cleaning products.  Many of the medications prescribed to me were sulfa drugs.  They made me worse and required more thiamine and helped accelerate my thiamine deficiency.

More....

"Effect of sodium sulfite on mast cell degranulation and oxidant stress"

https://pubmed.ncbi.nlm.nih.gov/16680925/

And

"Adverse reactions to the sulphite additives"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017440/

 

In my experience, doctors are not knowledgeable about nutrition and vitamins.  They are trained to prescribe pharmaceuticals to make money.  You are not sick because you are deficient in pharmaceuticals.  You are sick because you are deficient in vitamins.  

I hope you discuss the benefits of high dose thiamine with your doctor.  I'm not a doctor.  I'm a microbiologist.  High dose Thiamine has benefited me.  I wish more people believed that thiamine supplementation does work.  It's that simple.

Hope this helps.

 

 

[Buddie33]

This topic is very interesting as I also have a reaction to almost every food containing protein, which manifests as neuropathic pain. I noticed the comment that baked or boiled potatoes were ok, but not potato chips, which is exactly the same for me. I have the added complication of Parkinson’s disease. My doctors have carried out a multitude of blood tests and can find nothing wrong and I think that the next option will be to ship me off to a psych ward.

 I have been on a gluten free vegan diet for about 3 years and also avoid food with high protein. I would just like to find an answer, even if it was not good news.

Thanks

[knitty kitty]

@Buddie33,

Welcome to the forum!

Please read my previous post! 

Thiamine has been shown to help Parkinson's disease, too.  

Good dietary sources of thiamine are liver and meat.  Veggies, fruits and dairy are poor sources of thiamine.  

Thiamine is needed to digest proteins, fats, and carbohydrates.  If you don't have enough Thiamine, you can have problems digesting proteins, fats and carbohydrates.  

Ask your doctor for the erythrocyte transketolase test which measures how much Thiamine your body has used.  Blood tests for thiamine are not accurate.  They reflect the amount of thiamine you've consumed in the previous twenty-four hours.  Ask your doctor about High Dose Thiamine.  Doctors can give you Thiamine shots.  Thiamine is nontoxic even in high doses.  

Don't take thiamine supplements before this test.  

Hope this helps!