Herbs and food sensitivities?

[TrailWalker]

I have had undiagnosed gluten sensitivity (or celiac) for 20 years before I found out what the problem was. Unfortunately by then I had leaky gut and had developed numerous food sensitivities. Which leaves me with just a few safe foods to eat that I don't react to.

My main doctor is worried about my weight and these food sensitivities. She has given me a referral to a different type of doctor and says this doctor can make food sensitivities go away by using herbs. I have never heard of such a thing. Is this possible? An intergrative doctor?

I have been grain free since july 2019. I eat only whole foods. My weight at the moment is stable and at the bottom of the "normal" range of the BMI chart. I have lots of energy and do lots of exercise (walking). I do react to airborne fumes from restaurants while I am outside walking past. I also react to stuff like perfume, air freshener, etc.

I have problems with foods that contain sulfur. And I have no appetite and I am burping all the time..i have had these issues since I did what my allergist told me to do before the celiac blood test: told me to eat 3 normal serving of wheat a day for 10 days. By day 4 I was SO sick with SO many symptoms I couldn't do it any more. My arms and legs were going numb.. Before that I had been gluten free for 2 weeks. And before that I had only been eating a white hamburger bun about 2 times a week...otherwise no grains at all. I had noticed back then I would feel worse if I ate a whole wheat bun but I had thought it was some other ingredients...never dreamed it was the wheat itself! 

I react when others cook corn with itching, burning eyes, etc. And I once got burning hives on my arm for 2 hours from brushing against wild rice growing in a field of wildflowers I was taking photos of. 

So is there any truth in this idea of herbs making these sensitivities go away? I seem to be extra sensitive too. It's just I never heard of such a thing. I had thought they had to go away on their own, if they chose to do so.. I am also leary of making things worse. I had recently tried an electrolyte drink and it made me lose 8 pounds in 3 days plus it gave me all of those celiac symptoms too. Which I hadn't had in a long time! The drink was marked as Gluten Free but it was run on shared equipment...which is what I think got me. It seems I just don't tolerate anything processed.

My weight seems stable at the moment at 110. 

Oh I also have autism that leads to gut problems and I am also hypermobile that also leads to gut problems! I would qualify for the Hypermobile Spectrum Disorder if not hEDS. And I do have the celiac gene. Personally I think I have celiac but my doctor thinks its NCGS. 

The celiac blood test that allergist did came back negative (but she never told me the numbers) and then my current doctor reran the test when I was gluten free for 5 months. That came back as a "weak positive". If I remember correctly the one number was "20" which is at the bottom of a positive score. It was for the alpha gliaden I think. The other numbers were negative. And that confused her. But she agrees my symptoms had matched celiac. 

I have been to the allergist numerous times for IgE testing and its always negative. But I do have stuff show up in IgG and I definitely do react to these. Like I found out that flax is the secret thing that made me burp over 50 times in 40 minutes. And I have to avoid milk and eggs. And corn. All grains. Russet potatoes gave me bad tingling on my face. Lettuce gave me awful heartburn and I normally never get heartburn. The list just goes on and on... And beef liver makes me horribly bloated! Oh and I do react to plastic packaging. 

And apples, even organic ones, make stuff grow on my tongue? I had showed my doctor my tongue before that shutdown and she just dismissed it. Said it was bad oral hygiene as I wasnt "brushing my tongue". Well it doesn't matter if I do or not because the stuff does NOT come off!! 

The other week I had my tongue back to the pale white color (which is what the doctor said: "some people just have white tongues") and then I ate a few apples. Well in less than 12 hours the brown stuff was back! And then a few days later the brown stuff turns green! And then it turns dark green like moss. Since I have linked this to apples I now am eating only the beef and the acorn squash.. Maybe it will go back to the white tongue only? 

My doctors do very little blood tests...i am left trying to figure this stuff out on my own. I also had a natural doctor quit on me because I was too sensitive and react to too much stuff. Oh and my mother had these same issues but she never went to doctors..that is how I was raised: never going to doctors. As a kid i only saw a doctor twice (and that covers me from birth to 18). 

So do herbs actually DO anything for food sensitivities or is it all just some made up story to make my doctor feel that she is doing something to help??

Sorry so long.

 

[trents]

Welcome to the forum, TrailWalker! My, that's quite a tome! 

I have never heard that food sensitivities can be cured by herbs. That sounds "quackish" to me.

Have you looked into histamine intolerance?

[Wheatwacked]

I would be worth your while take the referral to meet with this doctor and find out what he/she really does. Any information is more than you have now. You can make your decision based on your meeting. Your doctor may not know anymore about him than you do. Chinese and Ayervedic have a long history with herbs, the Cleveland Clinic has an evidence based department. More important is the level of expertise. In any type of medicine there are doctors who are good and some not so good, some quacks some not. You can't decide based on a traditional doctors bias, because they obviously don't know what to do for you. Especially important does he listen to what you are saying.

[knitty kitty]

@TrailWalker,

Sounds like you would be better off if you were checked for vitamin and mineral deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Even the gluten free diet can be low in some nutrients.  Not having enough of certain vitamins can explain some of your symptoms.

I had sulfur sensitivity, too.  I couldn't stand perfumes, high sulfur foods, and plastic wrap (yup, it's treated with Sulfites).  

The coating on your tongue sounds like oral thrush.  It's caused by an overgrowth of yeast in your system.  I've had this, too.

Mast Cell Activation Syndrome could also be a possibility.  Mast cells in your immune system can get very touchy and react to the slightest stimulation from the environment (like your rice and wildflowers), or from what you eat.  Mast cells release histamine when stimulated.  Your body can have a problem clearing the histamine resulting in a histamine intolerance, like @trents mentioned.

Thiamine supplementation will help with these things.  

Thiamine (Vitamin B1) is needed for your body to get rid of excess sulfur.  

Oral thrush is caused by an overgrowth of yeast (Candida) in the mouth.  Thiamine impedes the growth of yeast and SIBO (Small Intestinal Bacterial Overgrowth) in the intestines. 

Thiamine regulates Mast Cells and stops them from overreacting with all that histamine.  Thiamine is needed to clear all that histamine.

Ehlers-Danlos syndrome can occur with Celiac Disease.  It's another autoimmune disease.  Thiamine has been shown help.

https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/

There are Eight B vitamins.  They all work together, so a B Complex containing all the eight vitamins, plus high dose Thiamine (500 mg throughout the day) will be beneficial.  The eight B vitamins are water soluble and nontoxic.  Any excess is excreted in urine.  

Blood tests don't reliably reflect vitamin status because vitamins are used within tissues, inside cells.  The vitamins in the blood stream don't reflect a deficiency within the tissues.  But get tested for deficiencies before starting supplementation.  

Celiac Disease causes malabsorption resulting in malnutrition. Vitamin and mineral deficiency testing is part of proper follow up care for people with Celiac.  Your body needs these vitamins and minerals to function properly.  

I would prefer you be tested for deficiencies before starting on herbal remedies.  There are some herbs that are beneficial, but they won't help if your body doesn't function properly because it's low in vitamins.  You're sick because you have nutritional deficiencies, not because you're deficient in herbs you've never heard of.

You may want to put some feelers out and try to find a doctor more knowledgeable about Celiac Disease in your area.  

Hope this helps you on your journey.  Keep us posted on your progress! 

 

[Wheatwacked]

4 hours ago, knitty kitty said:

I would prefer you be tested for deficiencies

We know nothing about this doctor other than the primary said s(he) uses herbs in the practice. That's why an initial consultation would be a good idea. That mom has the same problems could be genetic or environmental or difficienies in the diet. Traditional medicine mode is to find a diagnosis and prescribe a medication, usually to block the symptoms. That's not working. Rarely will insurance cover nutritional tests. Sometimes the only way to identify a vitamin/mineral issue is to examine the diet and correct it not unlike diagnosing NCGS by trial; or trial and error replenishment. Start with the B vitamins and go through the alphabet. A specialist in Celiac would be appropriate if available. With luck the "hebalist" will understand this. A can of Nutramigen a day might be a shortcut. Shotgun approach.

[TrailWalker]

 

 

The problem is my primary doctor doesn't listen to me. I keep telling her that I think it is celiac I have and she says it is NCGS. And if they say its NCGS then you dont get any follow up tests like you do for celiac. She is also the one who says that a white tongue (or other colors) is just something some people have. So she just blames it on me for poor oral hygiene and for not brushing my tongue. I've tried tongue scraper and a toothbrush. The colors do not come off. Plus brushing on it makes me feel like puking! She doesn't do any tests. I also keep telling her I am hypermobile and the last visit I told her I qualify for the Hypermobility Spectrum Disorder. But she just ignores me. On a previous visit she told me "I don't see what joints have to do with gut issues" and so she just thinks I am making this stuff up! But I actually do a lot of research. Almost everyone who had hEDS has gut issues. And if I wasn't eating as carefully as I am I would have horrible joint pain too! I have the papuls on my heels and everything. I dont have any of the scars they mention but then I never had any surgery so maybe that's why? Atrophic scars. 

 

So anyway I am stuck with this stuff growing on my tongue. And no idea of how to get rid of it. Or why I am burping all the time. My mother and I would both get this burping thing on and off from certain foods. When you would get it, your appetite would just vanish. Just drinking water would make you burp and you are full. Back then it would take about 3 weeks for it to go away on its own. We never did figure out what it was or why certain things caused it. But it did. My mother would get angry about it, saying a person could starve to death while they had this whatever. I do know one time we got it from peanutbutter that we ate on celery. By then we were already avoiding bread because it would make us itchy. But now I have had the burping thing since july 2019. Tried low fodmap for 4 months and it didn't stop it. 

So I really dont get much help from my primary. Which is a problem. I am also getting all of my calcium from capsules now since November 2020. No followup from my doctor on how my bones are. She is only worried about a mammogram and doing cancer poop tests. Because she says I am underweight. But I don't LOOK underweight. I look like an athlete! She only cares about the BMI chart. 

I guess I will check out that new doctor. Hopefully that person is smarter than her. And she won't refer me to a celiac doctor as she says I dont HAVE celiac! Because the results on the blood test had confused her so she had asked some GI doctor what it had meant and he had told her it was NCGS so that is what she says. And the other GI doctor I saw (I actually saw 2 of them - the first one told me I was crazy and it was my thoughts that were causing my issues) was the one who put me on low fodmap. So I am trying to do low fodmap and avoid sulfur foods (including my favorite bananas as I do unfortunately react to them). 

I think sometimes I have problems with histamine years ago but I don't think that is what's bugging me now. And I do take vitamins. I take Ultra Nutrients every day which has all the B vitamins in it. Unfortunately I DO react to corn and that is a headache trying to find any brand that is free of it but these are. That has 10mg of thaimine and sometimes I take an extra thaimine that is 150mg. 

Sometimes I think I DO have mast cell but I know that wont ever get diagnosed. Just like my hypermobility wont ever get diagnosed. Over here the one doctor who diagnoses EDS wont see you unless you have a POTS diagnosis. Which I don't have. I just have a bunch of undiagnosed stuff. Which I try to deal with on my own.

How do you get rid of thrush? Ok i will try taking extra thaimine. I know stress eats up thaimine too.

Oh and during my last visit on July 16 I had told my doctor about reacting to that drink I had tried and how it made me lose 8 pounds in 3 days. She just ignored me and said I have to be tested for cancer, even though I had clearly told her it had given me all of the celiac symptoms again. She just does not believe me that I have celiac. She was also asking me several times if I was puking all my food up on purpose (bulimia) to get skinny! She only cares about her own stuff! And I have told her on several different visits now that I am hypermobile. I am to the point I can't eat anything processed at all..and most things are run on shared equipment too.

Each day my multivitamin gives:

Vitamin A: 1125 mcg

Vit C 180 mg

Vit D3: 2.5 mcg

VitK: 50 mcg

VitE: 62 mg

Thaimine: 10 mg

Riboflavin: 10 mg

Naicin: 32 mg

B6: 10 mg

Folate: 340 mcg

B12: 250 mcg

Biotin: 50p mcg

Panathetic acid: 100 mg

Choline: 18 mg

Calcium: 50 mg

Iodine: 50 mcg

Magnesium: 50 mg

Zinc: 16.5 mg

Selenium: 50 mcg

Copper: 0.5 mg

Manganese: 0.25 mg

Chromium: 250 mcg

Molybdenum: 25 mcg

Potassium: 50 mg

 

I have started taking extra D3 and Vit K this past week as autumn will be coming soon (as the K comes with the D3). And I take the calcium/magnesium capsules to try and get my calcium + magnesium. 

I did see a different natural type doctor last summer on my own $. She only ran 3 blood tests (B12, iron and that storage iron) and she told me my B12 was too high and to stop eating the lamb I had been eating at the time and to stop the multivitamin too. But without the lamb I was then living on eggs & the yogurt + bananas...which was all foods I were reacting to! So I lost weight fast on that diet and my blood pressure went up. Plus she had me taking other stuff that I was reacting to badly! And going off the vitamins did NOT get rid of the neuropathy I had at the time...or the symptoms of Pots. Because it was caused by the milk and eggs! 

And i had to figure out on my own the reason why I would get constipated was because my diet was low on potassium! Which is why I am now eating lots of the acorn squash each day. I also do HRV training to try and improve my vagus nerve because I do have PTSD and a long history of trauma /neglect / abuse. Especially as a kid. Severe bullying and living with narcissist people. Add in autism. The autism was just diagnosed last summer. 

My HRV was 50 yesterday and today its 101! Generally its in the 70s. And my lowest heart rate at night is in the 40s. 

 

Sorry so long again! 

[TrailWalker]

Oh and even though I am grain free since July 2019 my hair continues to fall out, often in big clumps and most of the half moons on my fingernails are gone. Before they used to be on every finger. My skin is super soft though! 

And on a few toes I am growing double toenails. One complete nail on top of another. Many of my toenails grow up into the air too. Been that way for a long time.

And my whole life my fingernails were very bendy. If they get long I can easily fold them over. And usually they grow a certain length and then just break by themselves. 

And I had hair falling out as a teen too. My grandma used to tell me it was because I washed it too much but I think its something else. I have hair all over my apartment and it often blocks the shower drain too. 

[Wheatwacked]

You have so many issues it's hard to know how to start. I understand your frustration. First, whether Celiac or NCGS the treatment is the same. Gluten Free. Down the road it may matter but don't worry about it now. Until you find a doctor that helps, pick one thing that bothers you and focus on it. Then move to the next. Along the way things will get better.

Many of my issues were improved when I started 250 mcg (10,000 IU/day) D3. I have been taking it for about 6 years. At 2.5 mcg you are not even at the minimum. "The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years). "https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

Focus on your potassium. In the UK and WHO the RDA is 3 g/day. The US is 4700 mg/day. (4.7 g/day) "Potassium deficiency can be one of the reasons for hair loss, but many people could not recognize it because it is so common... Potassium element prevents hair loss and even potassium deficiency is one of the reasons for hair loss.   https://www.clinicexpert.com/eng/does-potassium-make-your-hair-grow/

Iodine. 50 mcg is less than half the RDA. The average Japanese starts at 1000 mcg and look how nice their hair is, plus they have less breast cancer. I eat 1 sheet of organic sushi nori a day for 400 mcg. In the US the upper limit is 1100 mcgThe first thing I noticed at that level was improved muscle tone in my chest and shoulders. A typical kid in the US in the 50's and 60's was around 600 mcg. (two sandwiches and a glass of milk)

Choline, pantothenic acid (B5), Folate (not from folic acid)

10 grams of fresh parsly supplies the RDA for vitamin K. 56 g almonds is the RDA for vitamin E. Beans have lots of Folate.

[Wheatwacked]

2 minutes ago, Wheatwacked said:

10 grams of fresh parsly supplies the RDA.

for vitamin K

[Blue-Sky]

On 8/4/2021 at 2:59 PM, TrailWalker said:

The other week I had my tongue back to the pale white color (which is what the doctor said: "some people just have white tongues") and then I ate a few apples. Well in less than 12 hours the brown stuff was back! And then a few days later the brown stuff turns green! And then it turns dark green like moss. Since I have linked this to apples I now am eating only the beef and the acorn squash.. Maybe it will go back to the white tongue only? 

I don't know about the tongue colors....However here are a few other ideas you might try. Some people may have an off colored tongue though anyway so I am not sure if that is a good indication of anything or not.

You can try the AIP diet as it works for IBS in a lot of cases. 

Since you are supplementing with vitamins I doubt that is the problem. Getting some vitamin d from sunlight  (not over the limit) might be better than supplementing it.

You can experiment with adding on other types of vegetables (if there are any you can tolerate) and some fruit as there are other compounds in different types of vegetables that help reduce inflammation. I doubt eating only a couple food items is good for your health if you can tolerate other foods. 

EGCG from green tea is known to reduce inflammation. 

You might take an omega-3 supplement regularly or eat fish.