Feels like I'm reacting to everything?

[EmptyJars99]

So, over the past year in a half I've notice I've been reacting to things I used to be okay with eating. And its not stomach pains or anything like that, I've been gluten free for almost 10 years now, had the endoscopy. Things I noticed, Potatoes, Rice, Celery, and Chocolate (so far) and I stopped eating eggs cause I notice it made the roof of my mouth itchy same with dairy. Every time I eat these items my lips and tongue go completely numb, so numb that its hard to talk its sort of feels like when they give you that shot at the dentist.  It stays like that for an hour or so then goes away. It took me a while to put two and two together rice and potatoes is something I've been eating every single day since I first got diagnosed and I'm not sure if I'm allergic or not I've been trying to find an allergist but they can't see me for two months... and it seems like they mainly test for the top 8 allergens. Right now I only eat one thing for breakfast, lunch and dinner, it feels like every thing I try makes my mouth go numb so I only have one safe food at the moment. I'm not sure what this is exactly but rice and potatoes are in pretty much everything I use so I REALLY hope this isn't the case. Do any of you guys have a similar problem? I also have a lack of appetite and I feel physically ill whenever I have to eat it takes a lot to not gag whenever I get something down. I genuinely miss food at this point.

[trents]

Welcome to the forum, EmptyJars99!

A strange effect indeed! I have no suggestions or bright ideas at this point. Do you experience any airway restriction along with the numbness?

[Wheatwacked]

There is a thing called Oral Allergy Syndrome that seems to fit your description.  It  The immune system recognizes the proteins as an allergen and triggers the release of histamine.  Which brings me straight to the question, how much vitamin D are you getting?  What is your 25 hydroxy vitamin D blood plasma?

80 ng/ml is a good target. Hypervitaminosis D is rare but always warned about by the mainstream nutritionists.  It is based on the UK Royal Accadamy of Physicians laying unsubstantiated blame for an epidemic of infant deaths back in the 50's.

Are you on any meds that might be this as a side effect?

An allergist will find problems and maybe recommend an antihistamine. They don't get paid for vitamins.

Vitamin D plasma and homocysteine tests will tell you a lot about your vitamin status. High homocysteine can be caused by low B12, Folate, Choline, B6 and Taurine.  Homocysteine is the inflammatory product of protein digestion and we need the above mentioned to provide methyl groups to recycle it.  

"Lack of thiamine may lead to a condition called beriberi. Signs of beriberi include loss of appetite, constipation, muscle weakness, pain or tingling in arms or legs, and possible swelling of feet or lower legs. In addition, if severe, lack of thiamine may cause mental depression, memory problems, weakness, shortness of breath, and fast heartbeat."  https://www.mayoclinic.org/drugs-supplements/thiamine-oral-route-injection-route/side-effects/drg-20066328?p=1"

This is an easy test used by WHO. Take thiamine supplement, 300 mg a day or more.  Expect improvement.

It is likely safe to assume if you are deficient in one B vitamin you are deficient in multiple.

Fried eggs bother me, boiled don't. Chicken or turkey breast sometime will make it hard to swallow. Occasionally I have trouble swallowing just water. Esophagus just locks up and I have to spit it out.  I've had the itchiness. Mostly vinegar would make my eustachian tubes itch. Sometimes eggplant will do it. It and lack of appetite have become rarer, since I upped my B vitamin intake.

• Currently taking and doing well:
• 10,000 IU vitamin D
• 500 mg each of B1, B3, B5.
• 1000 mcg of B12
• 1000mg Taurine
• 960 mg Phosphatidyl Choline.

I eat mostly garden salad, farm raised salmon, ground beef, cooked ham, hard boiled eggs, sheep feta and swiss, though sometimes, not lately, Swiss will cause the itch. For dairy I drink Half and Half or 100% Grassfed milk. Half and half has the nutrition of milk but no carbohydrates.  Grassfed milk doesn't have as much inflammatory C16 fatty acids which are increased by the palmitic acid used in commercial dairies to increase milkfat and milk volume.  I am up to  almost a pound of salad and 4-8 ounces of protein per meal usually once or twice a day and it is increasing. Starting to look forward to eating though for the most part eating is a necessity evil.  Eating is not optional is my current mantra.

All of my belly fat is gone now and energy levels have skyrocketed with the higher vitamin intake combo.

Avoid high omega 6 foods like sweet potato.  The standard american diet is high in omega 6 (20:1) and optimum is 1:1 omega 6 to 3 ratio. If carbs are not an issue regular potatoes are a good thing.

Most Americans are low in potassium, magnesium, choline, iodine intake.

Avoid synthetic vitamin A, E and Folic Acid.  Controlled trials have linked them to increased cancers.  One trial of folic acid had 17% more prostate cancer than the contol group.  It was stopped midterm. These are the same ones that processed gluten foods are fortified with. Whole food sourced does not cause cancer.

Quote

Furthermore, research shows that vitamin D can activate certain regulatory immune system cells that prevent the release of chemicals that cause and worsen allergic diseases. So a deficiency in vitamin D may inhibit this regulatory mechanism, which may worsen or trigger allergic disease.   https://www.verywellhealth.com/vitamin-d-deficiency-causes-asthma-and-allergies-83031#:~:text=Allergies and Vitamin D&text=Furthermore%2C research shows that vitamin,worsen or trigger allergic disease.

What Are the Most Common Vitamin Deficiencies?

[EmptyJars99]

19 hours ago, trents said:

Welcome to the forum, EmptyJars99!

A strange effect indeed! I have no suggestions or bright ideas at this point. Do you experience any airway restriction along with the numbness?

Thanks for the reply! No I can breathe just find I actually saw a  pulmonologist  and everything came back perfect. So I'm really at a lost haha

[EmptyJars99]

10 hours ago, Wheatwacked said:

There is a thing called Oral Allergy Syndrome that seems to fit your description.  It  The immune system recognizes the proteins as an allergen and triggers the release of histamine.  Which brings me straight to the question, how much vitamin D are you getting?  What is your 25 hydroxy vitamin D blood plasma?

80 ng/ml is a good target. Hypervitaminosis D is rare but always warned about by the mainstream nutritionists.  It is based on the UK Royal Accadamy of Physicians laying unsubstantiated blame for an epidemic of infant deaths back in the 50's.

Are you on any meds that might be this as a side effect?

An allergist will find problems and maybe recommend an antihistamine. They don't get paid for vitamins.

Vitamin D plasma and homocysteine tests will tell you a lot about your vitamin status. High homocysteine can be caused by low B12, Folate, Choline, B6 and Taurine.  Homocysteine is the inflammatory product of protein digestion and we need the above mentioned to provide methyl groups to recycle it.  

"Lack of thiamine may lead to a condition called beriberi. Signs of beriberi include loss of appetite, constipation, muscle weakness, pain or tingling in arms or legs, and possible swelling of feet or lower legs. In addition, if severe, lack of thiamine may cause mental depression, memory problems, weakness, shortness of breath, and fast heartbeat."  https://www.mayoclinic.org/drugs-supplements/thiamine-oral-route-injection-route/side-effects/drg-20066328?p=1"

This is an easy test used by WHO. Take thiamine supplement, 300 mg a day or more.  Expect improvement.

It is likely safe to assume if you are deficient in one B vitamin you are deficient in multiple.

Fried eggs bother me, boiled don't. Chicken or turkey breast sometime will make it hard to swallow. Occasionally I have trouble swallowing just water. Esophagus just locks up and I have to spit it out.  I've had the itchiness. Mostly vinegar would make my eustachian tubes itch. Sometimes eggplant will do it. It and lack of appetite have become rarer, since I upped my B vitamin intake.

• Currently taking and doing well:
• 10,000 IU vitamin D
• 500 mg each of B1, B3, B5.
• 1000 mcg of B12
• 1000mg Taurine
• 960 mg Phosphatidyl Choline.

I eat mostly garden salad, farm raised salmon, ground beef, cooked ham, hard boiled eggs, sheep feta and swiss, though sometimes, not lately, Swiss will cause the itch. For dairy I drink Half and Half or 100% Grassfed milk. Half and half has the nutrition of milk but no carbohydrates.  Grassfed milk doesn't have as much inflammatory C16 fatty acids which are increased by the palmitic acid used in commercial dairies to increase milkfat and milk volume.  I am up to  almost a pound of salad and 4-8 ounces of protein per meal usually once or twice a day and it is increasing. Starting to look forward to eating though for the most part eating is a necessity evil.  Eating is not optional is my current mantra.

All of my belly fat is gone now and energy levels have skyrocketed with the higher vitamin intake combo.

Avoid high omega 6 foods like sweet potato.  The standard american diet is high in omega 6 (20:1) and optimum is 1:1 omega 6 to 3 ratio. If carbs are not an issue regular potatoes are a good thing.

Most Americans are low in potassium, magnesium, choline, iodine intake.

Avoid synthetic vitamin A, E and Folic Acid.  Controlled trials have linked them to increased cancers.  One trial of folic acid had 17% more prostate cancer than the contol group.  It was stopped midterm. These are the same ones that processed gluten foods are fortified with. Whole food sourced does not cause cancer.

What Are the Most Common Vitamin Deficiencies?

Its interesting how you mention the vitamin D, years ago I went to a thyroid doctor and she said my vitamin D levels were very low so I may try to get that tested again. If I do eat meat its usually boiled chicken I can't seem to do red meat anymore. Thank you for a very detailed post I'll look into this.

[Wheatwacked]

Red meats are generally high in fat. Fat digestion requires choline to make bile. Best food source of choline is liver, eggs and beef.  Or 10 cups of cooked broccoli meets the minimum RDA. RDA is 550 mg to 3500 mg.  Less than 10% on western diet get enough.  Quicker to tsupplement choline. Like the other vitamins and minerals the RDA is what a healthy person needs to stay healthy. Sick people like us need more.  The nerve transmission molecule acetylcholine, needs choline.

B12 also has a role in nerve function and anemia.  The blood test is fairly accurate.

If everyone got enough vitamin D it would put the pharmaceutical industry out of business.  Hospitals and clinics would be overstaffed for the reduced patient load.  ERs would be busier because happy people are more active.  Happy Days!

[NotEllen]

I'm 3 months into trying to live gluten free and didn't expect it to be this hard, so I know how you feel. It seems that about every 5-7 days I have symptoms of gluten exposure, and then I spend days trying to figure out where it came from. Starting to feel like I was better off before, because now I am apparently extremely sensitive. I'm just venting. I know that this is all part of the process and I'm lucky to have an autoimmune condition that is treatable. 

[itarachiu]

On 6/22/2023 at 4:03 AM, EmptyJars99 said:

rice and potatoes is something I've been eating every single day since I first got diagnosed

These foods feeds the bad bacteria in the gut. All celiacs have imbalance of gut bacteria more or less. These foods also have a high glycemic index which cause inflammation in the body even in healthy people.

Rice is a seed just like the wheat grain that has gluten. Rice is gluten free of course but what they have in common is the fact that both are grains so you may want to avoid all grains for a while.

Potatoes are part from nightshades family which most celiacs have issues with them. A better alternative may be sweet potatoes.

On 6/22/2023 at 4:03 AM, EmptyJars99 said:

same with dairy

I don't know exactly but is like 50% of global population have some sort of intolerance to dairy including non celiac healthy people.

Add more meat and fat instead of these foods. For me pork works the best which is odd because is the pretty much the hardest meat to digest.

 

[Raquel2021]

On 6/21/2023 at 9:03 PM, EmptyJars99 said:

So, over the past year in a half I've notice I've been reacting to things I used to be okay with eating. And its not stomach pains or anything like that, I've been gluten free for almost 10 years now, had the endoscopy. Things I noticed, Potatoes, Rice, Celery, and Chocolate (so far) and I stopped eating eggs cause I notice it made the roof of my mouth itchy same with dairy. Every time I eat these items my lips and tongue go completely numb, so numb that its hard to talk its sort of feels like when they give you that shot at the dentist.  It stays like that for an hour or so then goes away. It took me a while to put two and two together rice and potatoes is something I've been eating every single day since I first got diagnosed and I'm not sure if I'm allergic or not I've been trying to find an allergist but they can't see me for two months... and it seems like they mainly test for the top 8 allergens. Right now I only eat one thing for breakfast, lunch and dinner, it feels like every thing I try makes my mouth go numb so I only have one safe food at the moment. I'm not sure what this is exactly but rice and potatoes are in pretty much everything I use so I REALLY hope this isn't the case. Do any of you guys have a similar problem? I also have a lack of appetite and I feel physically ill whenever I have to eat it takes a lot to not gag whenever I get something down. I genuinely miss food at this point.

I completely undertand.  I have found myself in the same situation.  I can eat eggs now or dairy as it causes half of my face/head to go numb. Very frustrating.  I am ok with rice and potatoes but do not tolerate water melon, peaches, apples or cherries. I am also feeling very nauseous lately after I eat. No idea why. I have been gluten free for 2.5 years now. I was wondering if there were other people like me. Also refined sugar give me crazy insomnia so I cannot eat any. Only eat non processed foods

Typo on my post I can not eat eggs or dairy anymore. 

[EmptyJars99]

On 6/26/2023 at 4:03 PM, Raquel2021 said:

I completely undertand.  I have found myself in the same situation.  I can eat eggs now or dairy as it causes half of my face/head to go numb. Very frustrating.  I am ok with rice and potatoes but do not tolerate water melon, peaches, apples or cherries. I am also feeling very nauseous lately after I eat. No idea why. I have been gluten free for 2.5 years now. I was wondering if there were other people like me. Also refined sugar give me crazy insomnia so I cannot eat any. Only eat non processed foods

Typo on my post I can not eat eggs or dairy anymore. 

Yes! It literally came out of nowhere. I miss cheese so much but it tore up my stomach and made me so itchy!  I can still eat corn for now if I have to give corn up too I'm going to scream haha. Thanks for the reply!

[EmptyJars99]

Updated to this (if anyone in the future comes across this thread) So I went to an allergist who was highly recommend by a pulmonologist I was seeing, over the past couple of months we've been doing allergy testing. Only food that came back positive for allergies is Pecans and Walnuts everything else was clear, no allergies to rice, potatoes, corn, or coconut just two tree nut allergies. I tired to eat some mash potatoes (which I haven't eaten in months)  the other day and broke out across my chest with hives, I have no idea what's causing these reactions they were just plan white potatoes with a little salt I didn't add any sort of dairy to it. With rice I just get super itchy but my allergist keeps reassuring me that it isn't a food allergy and he thinks it's something I'm coming across like shampoo or the detergent I use. I also noticed when I eat potatoes and rice and heavy carb foods my heart rate goes up i feel weak and nauseous and my mouth itches. Not sure where to go with this but for right now I'm staying away from those foods. 

[trents]

Food allergy testing is notorious for throwing false positives and false negatives such that it often doesn't match up very well with what you actually experience in your actual eating patterns.

[knitty kitty]

@EmptyJars99,

I think you would be wise to revisit what @Wheatwacked said about Oral Allergy Syndrome.  Allergy to birch pollen can trigger oral allergy reactions to plants with similar pollen like potatoes, celery, walnuts and pecans.  Oral Allergy Syndrome symptoms include hives and other skin reactions after eating a provocative food.  See Table One in the study below.

Oral allergy syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917934/

 

Potatoes are known to contain glycoalkaloids which promote Leaky Gut Syndrome.  These glycoalkaloids cause holes in the intestines allowing large molecules of food to get into the bloodstream and travel around the body provoking histamine release from mast cells.  Mast cells attack these food molecules as though they were invading microorganisms or pathogens.  Mast cells release histamine as part of their job defending the body from these foreign invasions.  

Mast cells release histamine as part of the immune reaction.  Histamine can affect nerve cells, damaging the nerve cells' protective coating (myelin sheath) causing numbness.

Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/12479649/

 And...

https://www.cfs.gov.hk/english/multimedia/multimedia_pub/multimedia_pub_fsf_112_01.html

 

Mast cells can become easily triggered to release histamine, especially in Thiamine deficiency.  See the study below...

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

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

 

Thiamine deficiency can occur in malabsorption syndromes such as Celiac Disease.  Thiamine cannot be stored for very long.  We can develop a Thiamine insufficiency in as little as three days.  Thiamine is needed to turn fats, protein, and carbohydrates into energy for the body. 

If a person eats a diet high in simple carbohydrates (potatoes, rice, sugar), more Thiamine is needed to process those carbohydrates.  The body needs 600 mg more Thiamine for every 1000 calories of simple carbohydrates above and beyond what that person needs for homeostasis (normal body functions).  This is called High Calorie Malnutrition.  We are Thiamine contingent.  If we don't get enough Thiamine, we get sick.

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

Dietary changes, such as following the Autoimmune Protocol Diet can help heal your digestive system.  Improvement can be seen in as little as three weeks.

 

An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/

 

These are things I've had to deal with myself on my Celiac journey.  I've found following the AIP diet made a major difference in my health.  Supplementing with Thiamine and the other essential nutrients our bodies require to live has made another major difference. 

Benfotiamine is a form of Thiamine shown to promote healing in the gastrointestinal tract.  

Anti-Inflammatory Effects of Benfotiamine are Mediated Through the Regulation of Arachidonic Acid Pathway in Macrophages

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249497/

And...

B Vitamins and Their Roles in Gut Health

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9227236/

Please take a serious look at what you are eating and consider changes to improve your health and quality of life.

[EmptyJars99]

On 9/23/2023 at 10:39 AM, knitty kitty said:

@EmptyJars99,

I think you would be wise to revisit what @Wheatwacked said about Oral Allergy Syndrome.  Allergy to birch pollen can trigger oral allergy reactions to plants with similar pollen like potatoes, celery, walnuts and pecans.  Oral Allergy Syndrome symptoms include hives and other skin reactions after eating a provocative food.  See Table One in the study below.

Oral allergy syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917934/

 

Potatoes are known to contain glycoalkaloids which promote Leaky Gut Syndrome.  These glycoalkaloids cause holes in the intestines allowing large molecules of food to get into the bloodstream and travel around the body provoking histamine release from mast cells.  Mast cells attack these food molecules as though they were invading microorganisms or pathogens.  Mast cells release histamine as part of their job defending the body from these foreign invasions.  

Mast cells release histamine as part of the immune reaction.  Histamine can affect nerve cells, damaging the nerve cells' protective coating (myelin sheath) causing numbness.

Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/12479649/

 And...

https://www.cfs.gov.hk/english/multimedia/multimedia_pub/multimedia_pub_fsf_112_01.html

 

Mast cells can become easily triggered to release histamine, especially in Thiamine deficiency.  See the study below...

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

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

 

Thiamine deficiency can occur in malabsorption syndromes such as Celiac Disease.  Thiamine cannot be stored for very long.  We can develop a Thiamine insufficiency in as little as three days.  Thiamine is needed to turn fats, protein, and carbohydrates into energy for the body. 

If a person eats a diet high in simple carbohydrates (potatoes, rice, sugar), more Thiamine is needed to process those carbohydrates.  The body needs 600 mg more Thiamine for every 1000 calories of simple carbohydrates above and beyond what that person needs for homeostasis (normal body functions).  This is called High Calorie Malnutrition.  We are Thiamine contingent.  If we don't get enough Thiamine, we get sick.

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

Dietary changes, such as following the Autoimmune Protocol Diet can help heal your digestive system.  Improvement can be seen in as little as three weeks.

 

An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/

 

These are things I've had to deal with myself on my Celiac journey.  I've found following the AIP diet made a major difference in my health.  Supplementing with Thiamine and the other essential nutrients our bodies require to live has made another major difference. 

Benfotiamine is a form of Thiamine shown to promote healing in the gastrointestinal tract.  

Anti-Inflammatory Effects of Benfotiamine are Mediated Through the Regulation of Arachidonic Acid Pathway in Macrophages

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249497/

And...

B Vitamins and Their Roles in Gut Health

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9227236/

Please take a serious look at what you are eating and consider changes to improve your health and quality of life.

Thank you for a detailed post, I really appreciate it!

On 9/22/2023 at 11:09 PM, trents said:

Food allergy testing is notorious for throwing false positives and false negatives such that it often doesn't match up very well with what you actually experience in your actual eating patterns.

Thanks, I wasn't aware, I'll just keep eliminating things I believe I'm reacting to! Thanks for the reply