Celiac Sprue, Or Latex Allergy?

[Dionysus]

About 20 years ago I had an anaphylactic reaction to what I think was latex. 10 years later, I was prescribed a cream to dab on a little skin cancer 2 x a week. I did this for two weeks and my latex allergy went bonkers... I changed my clothing to all natural fibres ( cotton/linen/silk/wool) and absolutely no Lycra, spandex, elastin. This is hard as I am a physio and senior yoga teacher who is constantly showing exercises. Finding bras and underwear was the hardest. Thank gosh for Cottonique. Next is to find a swim suit.  I replaced my memory foam mattress to a local small business making organic cotton and wool ones ( Black Sheep). I replaced all bedding to silk and cotton.  My work became latex free which was very hard ( Theraband/balls, physio tape, electrodes all had to be latex free ). I removed all the carpets in my home and work ( latex backing ), replaced bath mats to no rubber backing. Fast forward to recently, where I had a septic kidney infection ( 7 rounds of different heavy antibiotics and an anaphalatic reaction to the 5 th one on day 3) and since then I have developed many food sensitivities/allergies and my latex allergy is super heightened. I had blood taken and was told the many, many foods to avoid. I started the diet immediately, take a daily antihistamine, and nasal rinse twice a day. I take lots of herbs to heal the gut. Since then the daily hives, rashes, vomiting, gauging, diarrhea, weight loss, burning, itching, aunt like feeling crawling on skin and scalp,  faucet like post nasal drip coming down the throat and out of noise, both ears and eyes when it's really bad. The sneezing, extreme stomach pain, headaches, body aches, migraines, massive fatigue, sleeping on three pillows so I would not choke on post nasal drip,  and rarely tingling on tongue and in the mouth are rare now. But if I eat gluten, potatoes, or any of the many many foods to avoid those symptoms start immediately and last for days. My allergist could not do skin pricks as I am too sensitive and react to everything and he says it's impossible to be allergic to more then 3 foods or we all would be dead. So .... I am researching on my own and hoping to get a second opinion. Many of the foods you say to avoid in above posts are foods on my list. This makes a lot more sense to me. I really appreciate the tips, hope and info to navigate this. I read a bit on histamine and MCAS. What kind of specialist would you recommend ? I have seen so many specialist and they scratch their heads, shrug their shoulders and say I do not know or it's not my area of expertise. 

[cristiana]

Hello @Dionysus and welcome to the Forum.

I am so sorry to hear about all your issues.  

When you say you have seen a lot of specialists in the past, did that ever include a gastroenterologist or any other specialist who has run a coeliac panel, which would include these important blood tests:

• Total immunoglobulin A (IgA)
• IgA Tissue transglutaminase antibody (shortened to tTG)?

Have you ever seen a dermatologist when you have had a bad skin rash?  Some coeliacs have a rash called Dermatitis Herpetiformis (DH).  It can occur anywhere on the body but it is often found on the face, elbows, buttocks, knees.  It is very itchy and stings.  It is usually found symmetrically so you might get it on both knees, for example.  The blisters burst when scratched. If this sounds familiar, definitely make an appointment with a dermatologist who can test you for DH.

As an aside, I have a friend who seemed to be reacting to so many things.  It turned out it was not coeliac disease but a severe yeast intolerance. Some of your symptoms sound very much like what she experienced.  Something else you  may wish to consider?

I do hope you can find some answers in the New Year.

Cristiana 

 

 

[Scott Adams]

16 hours ago, Dionysus said:

About 20 years ago I had an anaphylactic reaction to what I think was latex. 10 years later, I was prescribed a cream to dab on a little skin cancer 2 x a week. I did this for two weeks and my latex allergy went bonkers... I changed my clothing to all natural fibres ( cotton/linen/silk/wool) and absolutely no Lycra, spandex, elastin. This is hard as I am a physio and senior yoga teacher who is constantly showing exercises. Finding bras and underwear was the hardest. Thank gosh for Cottonique. Next is to find a swim suit.  I replaced my memory foam mattress to a local small business making organic cotton and wool ones ( Black Sheep). I replaced all bedding to silk and cotton.  My work became latex free which was very hard ( Theraband/balls, physio tape, electrodes all had to be latex free ). I removed all the carpets in my home and work ( latex backing ), replaced bath mats to no rubber backing. Fast forward to recently, where I had a septic kidney infection ( 7 rounds of different heavy antibiotics and an anaphalatic reaction to the 5 th one on day 3) and since then I have developed many food sensitivities/allergies and my latex allergy is super heightened. I had blood taken and was told the many, many foods to avoid. I started the diet immediately, take a daily antihistamine, and nasal rinse twice a day. I take lots of herbs to heal the gut. Since then the daily hives, rashes, vomiting, gauging, diarrhea, weight loss, burning, itching, aunt like feeling crawling on skin and scalp,  faucet like post nasal drip coming down the throat and out of noise, both ears and eyes when it's really bad. The sneezing, extreme stomach pain, headaches, body aches, migraines, massive fatigue, sleeping on three pillows so I would not choke on post nasal drip,  and rarely tingling on tongue and in the mouth are rare now. But if I eat gluten, potatoes, or any of the many many foods to avoid those symptoms start immediately and last for days. My allergist could not do skin pricks as I am too sensitive and react to everything and he says it's impossible to be allergic to more then 3 foods or we all would be dead. So .... I am researching on my own and hoping to get a second opinion. Many of the foods you say to avoid in above posts are foods on my list. This makes a lot more sense to me. I really appreciate the tips, hope and info to navigate this. I read a bit on histamine and MCAS. What kind of specialist would you recommend ? I have seen so many specialist and they scratch their heads, shrug their shoulders and say I do not know or it's not my area of expertise. 

It sounds like you are self-diagnosed with non-celiac gluten sensitivity, but haven't been tested for celiac disease is that correct?

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

@Dionysus,

Histamine Intolerance could be what you are experiencing.  You would do well to focus on getting the essential vitamins and minerals needed for healing.  

We can lose our ability to absorb sufficient nutrients when our bodies are inflamed.  Many of the essential vitamins and minerals we need will help reduce inflammation.

Vitamin D helps regulate the immune system, effectively telling mast cells not to be so over-sensitive and to not react to every little thing.  

Thiamine Vitamin B 1 helps the mast cells to NOT release histamine.  Thiamine and Pyridoxine Vitamin B6 help to break down histamine.  The eight essential B vitamins need each other to work properly, so a B Complex supplement to boost your absorption would be beneficial.

Antibiotics, especially multiple courses of antibiotics can seriously deplete Thiamine.  Benfotiamine, a boioactive form of Thiamine, has been shown to reduce inflammation and promote healing, especially in high doses.  Benfotiamine is safe and nontoxic.  Be sure to take Magnesium with Thiamine and Benfotiamine as they make essential life sustaining enzymes together.  

Providing the nutrients our bodies need to be healthy is the most logical way to go.  On my journey, I was prescribed medications that didn't treat the root cause, only covered the symptoms poorly.    Having studied microbiology and nutrition at university, and desperately ill, I chose to provide my body with the "vital amines" every cell in my body needed to function, as I had learned.  I got better very quickly. 

Do look into providing your body with those essential vitamins and minerals.  A nutritionist might be helpful.  

Do keep us posted on your progress!

Interesting Reading:

...Histamine Intolerance starts in the gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

....Thiamine Deficiency Disorders

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

...Hiding in Plain Sight Modern Day Thiamine Deficiency

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

[Dionysus]

On 1/13/2024 at 2:28 AM, knitty kitty said:

@Dionysus,

Histamine Intolerance could be what you are experiencing.  You would do well to focus on getting the essential vitamins and minerals needed for healing.  

We can lose our ability to absorb sufficient nutrients when our bodies are inflamed.  Many of the essential vitamins and minerals we need will help reduce inflammation.

Vitamin D helps regulate the immune system, effectively telling mast cells not to be so over-sensitive and to not react to every little thing.  

Thiamine Vitamin B 1 helps the mast cells to NOT release histamine.  Thiamine and Pyridoxine Vitamin B6 help to break down histamine.  The eight essential B vitamins need each other to work properly, so a B Complex supplement to boost your absorption would be beneficial.

Antibiotics, especially multiple courses of antibiotics can seriously deplete Thiamine.  Benfotiamine, a boioactive form of Thiamine, has been shown to reduce inflammation and promote healing, especially in high doses.  Benfotiamine is safe and nontoxic.  Be sure to take Magnesium with Thiamine and Benfotiamine as they make essential life sustaining enzymes together.  

Providing the nutrients our bodies need to be healthy is the most logical way to go.  On my journey, I was prescribed medications that didn't treat the root cause, only covered the symptoms poorly.    Having studied microbiology and nutrition at university, and desperately ill, I chose to provide my body with the "vital amines" every cell in my body needed to function, as I had learned.  I got better very quickly. 

Do look into providing your body with those essential vitamins and minerals.  A nutritionist might be helpful.  

Do keep us posted on your progress!

Interesting Reading:

...Histamine Intolerance starts in the gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

....Thiamine Deficiency Disorders

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

...Hiding in Plain Sight Modern Day Thiamine Deficiency

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

Thank you so very much. Super duper helpful and informative. Since I have been on this restrictive diet, taking supplements and the things to heel my gut lining that my functional med dr told me to do, I  am so much better. I have way better energy ! I no longer have stomach pain, gauge, vomit or have diarrhea that was all daily. I have mild post nasel drip ( so much better as I can sleep on 1 pillow not 3 so I do not choke at night or wake up in a coughing fit ). I have way better energy and the brain fog has lifted after many, many years. I am beyond grateful for finding this site and everyone's kind, kind help. I know longer feel isolated or scared. It's nice to know other folks have this too ( but I would not wish this on anyone ). I accept taking food with me everywhere and not wearing Lycra/spandex/elastin. I wish more dr's knew about the relationship to anaphalatic latex allergy and food intolerances ( gluten, potatoes ect ). This website and you kind, thoughtful, helpful folks gave me hope and direction. So I will pass that forward and educate as many folks as I can. 
My latest Q is ..... do folks take a daily antihistamine ???? or do you manage your symptoms with dietary and environmental changes and are able to come off of an antihistamines or not use it at all ? 

[knitty kitty]

I chose to make dietary and environmental changes.  

I follow a low histamine Paleo diet.  I take Benfotiamine B 1, Pyridoxine B 6, and B12 Cobalamine because they make an enzyme Diamine Oxidase that breaks down histamine.  DAO, Betaine Hydrochloride, and Niacin are available as nutritional supplements.  Betaine Hydrochloride helps to breakdown histamine in foods.  Benfotiamine and Niacin help increase stomach acid so that can help break down histamine in foods.  

Trace minerals like Zinc and Molybdenum can also help lower histamine levels.

Hope this helps!

Relevant Reading...

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859183/

 

P.S.  The low histamine diet doesn't have to be forever.  Just until the histamine levels get lower and our body heals so it can handle histamine effectively.

Edited January 16, 2024 by knitty kitty
Added post script