Anybody else have a similar experience...theories welcome as its something which i dont really understand.....

[GeordieGeezer]

Ive had a food intolerance issue for at least the last 16 years. Started with a dairy intolerance but gradually increased to almost all food affecting me as it just got worse and worse. At one point i couldnt find much to eat that i wasnt intolerant to and was barely eating and started to become skeleton like. In other words it was pretty horrific.

Anyway the good news is i have discovered i can eat absolutely ANYTHING as long as i only eat it once in a 2 or 3 day period. I dont understand why it doesnt affect me the first time i eat it and with a 2 or 3 day gap doesn't present any symptoms. If i was to eat something im intolerant to for lunch and dinner the same day or 2 days in a row then a bad reaction happens.

I never even tried this approach all these years as i have never heard of this happening to anybody else and have found nothing on the internet of anybody having the same experience. 

Anybody here have an explanation?

[cristiana]

Hello GeordieGeezer and welcome to the forum

Very interesting to read your discovery.   I am afraid I can't find anything on the internet to help, either, but I'm hoping someone on the board might have come across something in the past and be able to help.  

Out of interest, have you ever been tested for any intolerances or Coeliac Disease, and do you have any other medical problems or allergies?

Cristiana

 

[Scott Adams]

I've mentioned this in the past on this forum, but years before my celiac disease diagnosis I was seeing a well-respected allergy doctor for both food and pollen allergies. He ran various allergy tests and created two custom serums for me, one was for my pollen allergies, and the other was for my food allergies. 

To create these serums I had to do blood allergy tests and my results indicated very high allergies to several foods, and wheat was also included as an extremely high food allergen. Back then I did not notice any symptoms when I ate wheat, although I did have chronic nasal congestion, but his advice was for me to rotate the high allergen foods in my diet to only 1-2 times per week, including wheat.  Even though I took the daily allergy shots, I did not modify my diet, and continued eating wheat and the other high food allergens often. 

Around 3-4 years later I started having classic celiac disease symptoms, and 2 years after that was diagnosed with it. To this day I do wonder what might have happened had I listened to this allergy doctor and rotated my diet according to his plan. Would I have never developed celiac disease? 

This is just food for thought, and my situation may not be applicable to yours, but I do think it is a good idea to listen to your body, and sometimes to your doctors as well.

[GfreeOH]

Hello!

I can second what Scott has said. I am newly diagnosed at 45. I started having food allergy issues/testing at 21 years old. At that time, I had skin testing and some different blood draws. i was allergic to a host of environmental allergies, 35 food allergies (some low level at 1/2 but many like Corn, Soy, Potato, Tomato, Wheat, Pea, Peanut all were at 4 or 5 for me. With so many positives, the doctor did not recommend eliminating any altogether besides the Pea, Peanut and tree nuts because they were ones I was reactive to and were part of the common top 8 for anaphylaxis risk. I was told if I ate any of the lower level ones I reacted to, I should rotate and only have that food once every 3/4 days. I found it too difficult to eliminate 30 ish foods, and rotate so I did not follow the instructions as well as I should have. I eliminated Peanuts and Treenuts, and Pea - but do still consume the other ones together. I had a GP tell me once I would cause more damage eliminating all of them nutritionally and so I kind of took that advice as well. Here I am many years later diagnosed with Celiac, and, I have always just had food intolerance issues, unfortunately. 

If you have different environmental allergies it may benefit you to look at some cross-reactivity charts online to see what foods may be bothering you that commonly affect one with say a birch allergy or latex allergy if you have one. I have a latex allergy and can’t do banana, kiwi, or avocado without itching and some lip swelling/hives.

[Scott Adams]

There is no way to no for sure now, but at that time I was in college and essentially a glutenoholic! I pretty much ate it 2-3 meals a day, so the thought of skipping it even one day seemed impossible. Oh well...

[GeordieGeezer]

Perhaps a lot of people with food intolerances have the same thing going on as me and can eat Gluten/Dairy/Soy/Meat etc every 2-3 days but just don't realise it...

Absolute game changer being able to eat everything again and with the option of rotating food like with gluten one day, dairy the next day to be able to eat a 'normal' diet daily again.

 

[cristiana]

Really interesting to hear this.  One of my children seems to be able to eat just so much dairy, then it's a problem.  Rather than give it up together, we might try this approach.  Thanks for sharing.

[Scott Adams]

2 hours ago, GeordieGeezer said:

Perhaps a lot of people with food intolerances have the same thing going on as me and can eat Gluten/Dairy/Soy/Meat etc every 2-3 days but just don't realise it...

Absolute game changer being able to eat everything again and with the option of rotating food like with gluten one day, dairy the next day to be able to eat a 'normal' diet daily again.

 

I would only add that when it comes to the point where celiac disease has been diagnosed, then all bets are off when it comes to rotating gluten in your diet. I doubt I would have tested positive for celiac disease back then, and did not have any obvious symptoms when I ate wheat, other than my chronic nasal congestion and some odd rashes, including blepharitis (inflammation of the eyelids). Once the runaway autoimmune disease is turned on--in my case a few years after ignoring that doctor--any amount of gluten seems to trigger it. 

I do think dietary rotation would be very helpful for those with most food allergies/intolerances though, and I would love to see a study done on celiacs who have been on a gluten-free diet for years, and have fully healed. I know that some celiacs in this group can go into something like "remission" where eating gluten again does not seem to affect them. A study could be done where gluten is given once every 4-5 days in such a group to see how it affects them.

[boux]

On 1/22/2023 at 10:53 PM, GeordieGeezer said:

Anyway the good news is i have discovered i can eat absolutely ANYTHING as long as i only eat it once in a 2 or 3 day period.

Anybody here have an explanation?

I don't know if I can give an explanation, but I can relate to your post. I'm sensitive to about 100 different foods and additives, so I don't get a whole lot of variety in my diet right now. I've found that I can never have a  bite of wheat, but I can eat most other foods if I only have them rarely.

I'm new to this and I think some of my sensitivities are exacerbated by gluten. As my body heals, it seems like I can have a small amount of something I'm sensitive to, but if I eat it again in a few days, I wind up in bed for at least a day.

[trents]

On 1/22/2023 at 10:53 PM, GeordieGeezer said:

Ive had a food intolerance issue for at least the last 16 years. Started with a dairy intolerance but gradually increased to almost all food affecting me as it just got worse and worse. At one point i couldnt find much to eat that i wasnt intolerant to and was barely eating and started to become skeleton like. In other words it was pretty horrific.

Anyway the good news is i have discovered i can eat absolutely ANYTHING as long as i only eat it once in a 2 or 3 day period. I dont understand why it doesnt affect me the first time i eat it and with a 2 or 3 day gap doesn't present any symptoms. If i was to eat something im intolerant to for lunch and dinner the same day or 2 days in a row then a bad reaction happens.

I never even tried this approach all these years as i have never heard of this happening to anybody else and have found nothing on the internet of anybody having the same experience. 

Anybody here have an explanation?

GordieGeezer,

What you experience is common to one degree or another. The explanation may be that there is a threshold for reaction to certain foods that if you space the consumption of them by a few days, your body is able to clear the offending proteins. I have a sensitivity to many common foods but with most all of them if I eat small portions and don't eat them too often, I'm fine. Now, I would not apply that to celiac disease because that is not a sensitivity or an allergy, it is an autoimmune disorder. You do not say whether or not you are a celiac. For me, when it comes to gluten, the threshold is no more than a trace.

[knitty kitty]

@boux

Are you eating high histamine foods?

[sboo]

I've been doing a '4 day rotation diet' for 1.5  years (except no gluten or dairy).

I had 30+ food sensitvities and kept developing new ones.

Apparently it takes 3 days for your body to calm down from a food reaction, if you eat a food you're slightly reacting to, then eat it again the next day, the reaction starts to become more, so over a period of months you may start to notice symptoms to a food.

But by leaving it 3 days after a food, the body forgets and then it doesn't develop to the point of a full reaction.

So for example I'll have soy on a Monday and not again until Friday. It's worked really well for me and I can now eat most things but just have a couple of sensitivities.

If I've developed a food sensitivity, it takes my body 6 months of completely cutting it out, and then I can reintroduce it again with no symptoms but I have to rotate it or I can relapse.

Side note, after seeing 2 doctors. 2 gastroenterologists and a nutritionist. In the end I saw a functional medicine nutritionist, who did a functional stool test, treated some fungals and bacteria in my gut and it has actually worked, my guts 90% better.

The other thing to look at is histamine, which is high in aged foods. It's like a bucket, you can have it but when you've reached a certain threshold then you'll feel unwell.

[GeordieGeezer]

Update:

Just realised i never updated this post with a major development.

since May 2023 i can now eat whatever i want 7 days a week. I accidentally ate the same type of food two days in a row and suffered no reaction so immediately realised my body had recovered. And of all places to discover it i was in a 5 star resort in Greece where there was all you can eat breakfast lunch and dinner buffets so yeah you can maybe imagine i tucked in nicely after so many years of not being able to.

Been about 18 months now with zero reactions so even though the modern medical way of thinking is that auto immune disease cant be cured....my stomach says different.

[trents]

Thanks for getting back to us Geordie. From time to time we do get reports of what seems like remission from those who have been diagnosed with celiac disease but it doesn't always last. I don't recall you saying you have been diagnosed with celiac disease, but just having various food intolerances and also implying in your last post that these intolerances are autoimmune related. So, I don't know where you are with celiac disease which is an autoimmune disorder.

[GeordieGeezer]

Yes its quite possible that my condition wasnt coeliacs but something similar as had the classic symptoms but also more intolerances than just gluten. I have read that it is possible to become intolerant to more and more different types of food if you keep eating what you are intolerant to, not sure if that applied to gluten and coeliacs or not as it is a while ago i read that.

Do you know of people who have been in remission for 18 months or longer?

 

 

[trents]

No, I don't know of anyone in particular.

But if you are consuming gluten regularly, it would be a great time to get antibody testing done for celiac disease. Many celiacs are of the "silent" type. That is, even though slow damage is being done to the lining of their small bowel, they are largely asymptomatic and remain that way sometimes for years until the damage becomes severe enough. Just a thought.

[sboo]

I had a couple of friends who after a course of antibiotics were struggling to eat much. The anti biotucs can kill off alit of your gut bacteria and it took quite some time to build these up again but after a year or so they could eat normally again.

[Scott Adams]

15 hours ago, GeordieGeezer said:

Yes its quite possible that my condition wasnt coeliacs but something similar as had the classic symptoms but also more intolerances than just gluten. I have read that it is possible to become intolerant to more and more different types of food if you keep eating what you are intolerant to, not sure if that applied to gluten and coeliacs or not as it is a while ago i read that.

Do you know of people who have been in remission for 18 months or longer?

There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.