Cross reactivity / FPIES / IgG / IgE testing

[Liam R]

Hello all again not been here for a few month since my last post..........

Since then i have been going around in circles, experimenting with foods and diet etc.

I havnt progressed at all since june/july time in fact the last 2 weeks has been terrible with my morning burning pain and brain fog to top all brain fog 

UNTIL that is i came across a video by Dr Osborne on You tube

My last diet experiment was to go whole food plant based ( gluten-free of course ) which i interpreted as fruit, veg & grains 

So stocked up the fridge with the above and started to consume....  with the base of my diet to be rice and gluten-free oats WELL,

I started to feel even worse the brain fog was increasing and now the pain was all day and all evening and i couldn't get to sleep some nights, i thought i had chrons or colitis for definite now. 

Then about 4 days ago came across a you tube video " rice is toxic for celiacs "

Please please dont attack me for this im just telling my story .......... the video explained that all grains have prolamins 

Prolomin is the umbrella name of proteins over the the grains 

Wheat has gliadin 69% of the protein

Rye has secalin 30 -50 % of the protein 

etc etc..........

Interestingly 

Oats has Avenin 12 -16 % of the protein 

Rice has oryzenin 5% of the protein 

He says that celiacs can react to all the prolamins in grains and that we should avoid eating them.

Now i know that some celiacs do react to oats BUT rice this cant be true !!!!

So i deceided to cook some gluten-free rice and blend it with water into a thick milky drink

And before bed i drank the lot, note i wasnt in much pain this particular evening as well so.....

A few hours later i was laid in bed from about 9pm ish and i was tossing and turning id gone from feeling tired to wired, eventually i got to sleep but was then awoken about 3 am with the worst pain yet it felt like my intestines were on fire 🔥 

I nearly didnt make it to work that day but pushed my self to go, i took my pack up which consisted of gluten-free rice gluten-free wraps and some pepper and cucumber.

So id had rice the evening before and was now eating rice for my lunch, bare in mind i have been eating gluten-free cakes / cookies that were either made from rice or oats 

By the end of the day i was in bits, the worst abdominal pains & brain fog since being diagnosed.

This was the day i watched the you tube video because i like to connect the dots and i felt like i had been poisoned by rice i typed in to you tube is rice toxic and BOOM.... theres was this video  as stated above.

I know there is a lot of bull&#%@ on the web but now i am depressed and desperate.

So the next day threw everything in my food cupboard that contained any grain into the bin i have dine this numerous times now £££££ straight into the bin, and here i am 3 days later no brain fog symptoms dramatically reduced eating a grain free diet and loving life a little bit more than i have in the last 2 years. 

what the heck is going on ?

I am so lost 

Can celiacs react to all grains ? Including rice.

Now i am worried about FPIES & cross reactivity   as FPIES can include other allergenic foods like dairy, bananas, fish the list is huge, or am i just a celiac who reacts to other grains not all ? 

Im getting tried of all this food Elimination as for the last 2 years i have been eating rice most days and thinking it was other foods like milk cheese beef or lamb 

Has anyone had a blood allergen test done like the ones York tests do here in the UK i have just ordered 1 as i am sick of this guessing im hoping it will at least give me an idea of what foods i can start eliminating and start a true Elimination diet. 

Love to you all X

 

 

 

[knitty kitty]

Hi, @Liam R!

I understand what you are going through.  If you understand how your immune system works, you'll understand better what's happening in your body.  

Antibody producing cells are constantly making random antibodies, sort of like spitting out random number combinations for a lottery.  When an antibody meets "something" floating in our digestive tract or blood stream that has the same number combinations, the antibody carries that "something" back to its mother antibody producing cell and says "we got a winner!"  So that mother antibody producing cell starts making more of those same number combinations antibodies and makes baby antibody producing cells that make more antibodies.  And those make more baby antibody producing cells make more antibodies.  And those antibodies go looking for more antigens with that magic number combination.  And on and on.

Sometimes the number combinations are close enough to that winning combination that antibodies attack those, too.

So gluten can be viewed as that first triggering winning lotto number combination.  Other grains may have only a part of the winning numbers, but they get attacked by antibodies, too.  

That's why the Autoimmune Protocol Diet works so well to heal our guts.  We cut out ALL grains.  This reduces the chances that those antibodies will attack other things (proteins from other grains) with partial winning number combinations.  

The Autoimmune Protocol Diet (AIP diet) also cuts out dairy because it's got lots segments of winning lotto numbers, too.  Dairy can cause continuing inflammation and damage the same as gluten because they so closely resemble each other (very similar lotto numbers).  

The AIP diet cuts out legumes (beans) because they contain Lectins that are hard to digest.  Bacteria in the digestive tract love incompletely broken down carbs and fiber.  These bacteria digest these further but produce lots of gas.  That's not good, so no legumes.  Same for nuts and seeds.  Nightshades are omitted because they cause "leaky gut" syndrome.  

The AIP diet allows meat, veggies and some fruits.  Yes, it's restrictive, but this diet has been scientifically proven to promote healing in the digestive tract and calm the immune system.  It was developed by a Celiac doctor for herself and her Celiac family, Dr. Sarah Ballantyne. 

Antibody producing cells live about two years.  If they are stimulated by exposure to "winning lotto numbers" during those two years, they reproduce more antibody producing cells that will also live about two years... So if you can stay unexposed to gluten or other triggering foods like dairy and rice, those antibody producing cells will die off.  This is why some people say they didn't have a reaction when they were accidentally exposed and they think they can eat gluten again.  Don't think like this!  You body is still chucking out random lotto number combinations.  Anti-gluten antibodies will be made because the recipe is written in your Celiac genes to make anti-gluten antibodies.  It's just a matter of time before that wire gets tripped and the immune system runs amuck again.  So, no eating out, no processed foods, no possibility of cross contamination with triggering similar lotto number combinations antibodies for two years minimum.  The clock starts over with any "glutenning".

Do talk to your doctor or nutritionist about dietary changes and also supplementing with vitamins and minerals you may be insufficient in.  A gluten free, grain free diet can be low in certain vitamins and minerals, so supplementing ensures you get plenty.

Interesting reads....

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And....

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

I react to wheat, barley, rye, dairy, corn, rice, buckwheat, millet, and teff.  Guess who has been on a grain free diet seemingly forever....

Remember those whole grains are a source of vitamins and minerals.  If you cut out grains, you must provide the vitamins and minerals from other foods in your diet and by supplementation.  Talk to your doctor and nutritionist about nutrient dense foods and supplementation.

Problems with FPIES usually happen in children who outgrow it as their immune systems mature.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9234874/

 

Hope this helps!

[Liam R]

Thanks knitty kitty,

 

Wish id have understood this better at the begining.

Your analogy makes total sense.....

Id researched cross reactivity in the beginning but was unsure of how legit it all was, avoid gluten and you will be OK is the rhetoric hmmmmmmmmm  but it goes deeper than this.

Im really really annoyed that my Gastro Dr and dietician didnt educate me on this, and then to dismiss it as functional dyspepsia is absoloutly diabolical.😡

Now i know 1st hand this reaction to grains is definitely real.

For the past few days i feel normal, my stress is down, pain is down, my thinking is becoming clear  i used to dred going to bed knowing i would wake up feeling like i had been poisoned, now im laid on my sofa with my family watching a film looking forward to a good nights 😴 sleep.

What a horrible situation to get in to for anybody diagnosed with celiac i feel like i have been to hell and back.

Newly diagnosed people need better education on this disease, not to seek info from google and you tube FFS.

Its a good job we have a forum, hopefully no more pain just yet.

Take care everyone and thanks 

 

[knitty kitty]

@Liam R,

I agree.  It's been a hard road to get diagnosed, and an up hill journey every day to stay healthy.  (Read my blog for research articles and my story.)    

I'm here because I couldn't let others stumble around blindly going through what I went through.

 

Doctors don't have to live with Celiac like we do.  They're in the bleachers on the weekends, we're on the field each and every day.  

That dyspepsia is an early symptom of Thiamine insufficiency.  Take Benfotiamine with each meal and a B Complex once a day, and Magnesium Glycinate, and that should go away quickly.  Vitamin D helps regulate the immune system and is frequently low in Celiac people.  

Keep us posted on your progress!