Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


GeordieGeezer

Recommended Posts

GeordieGeezer Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cristiana Veteran

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 Grand Master

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.

  • 2 weeks later...
GfreeOH Explorer

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 Grand Master

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 Newbie

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 Veteran

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master
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.

  • 2 weeks later...
boux Newbie
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 Grand Master
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 Grand Master

@boux

Are you eating high histamine foods?

  • 2 months later...
sboo Rookie

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.

  • 1 year later...
GeordieGeezer Newbie

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 Grand Master

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 Newbie

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 Grand Master

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 Rookie

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 Grand Master
On 11/8/2024 at 6:46 PM, 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 studied enough to know what health risks you might face.

  • 2 weeks later...
Pat Denman Rookie

Many years ago, there was a doctor who recommended never eating the same food within 5 days. Also recommended greens only 2X per week. Can't remember his name. Dx Celiac at age 87 by self as where I live in the northwest of Idaho, there is no medical insurance which covers Celiac disease or even will pay for tests!

Scott Adams Grand Master

I'm not sure which doctor you mean, but it's an interesting approach that might possibly help people with food sensitivities, and possibly even prevent some cases of celiac disease from developing. I still wonder what might have happened with me had I listened to my allergist many years back who wanted me to only eat wheat once per week.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,423
    • Most Online (within 30 mins)
      7,748

    Cindyceliac
    Newest Member
    Cindyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.