So I've been a member on here for a while as I believed my problems started and ended with a wheat intolerance however after not really improving in the 3 years I've been off Gluten and doing more diagnostics with my doctor and learning more in general I've come to realise I have a quite bad issue with leaky guy or more technically eosinophilic gastroenteritis and so this part of the forum is more appropriate for this post. I can't be sure if this was all originally caused by the wheat or one of the milk proteins but I thought I'd write a story about my diagnostics and fight to overcome this war between the mind and immune system. I believe I'm now knowledgeable enough about the problem it to win the war and so I'd like to update this thread as I go down this path of repair. Because I'm lucky to lived in a country were blood tests are paid 100% by the governments health care I've been able to have quite a bit more regular testing and more tests than most people with allergies would have been able to have so I felt I should put some information down in writing for everyone that isn't able to do that.
I don't believe looking back over my life that I've ever been in optimal health due to underlying food allergies and I believe most people in the world have the same problem only to a lesser degree that they will never notice. I've always been the kid/guy that's been on occasion quite "sick in the guts" often as a kid to the point of being curled up on the floor in pain sweating. In those times I'm sure the only real problem I had was some kind of milk allergy. That was fine and I stopped drinking milk when I coincidently decided to to become vegan in my early 20s.
Other than persistent and I would say quite bad acne/cysts especailly on my back I enjoyed fairly good health for the next 8 years. I never understood what was the go with the acne, It only started once I became vegan and no matter what changes I made I never seemed to be able to control it.
I changed back to a less extreme vegetarian diet at the age of 30 although my acne never improved it as in general easier to eat enough calories with the addition of cheese. Around the age of 36 I noted a quite large swollen node in my neck and underwent a myriad of testing for cancers of all kinds, CT scanners, ultrasounds biopsies you name it. After been given the all clear I continued on life with my lop sided lumpy neck and it persisted unchanged for 6 years. Over those years I began to have a huge problem with gluten... to the point where I would have diarrhea all day every day, whenever I ate anything with wheat in it. This progressed slowly but once it was all day all the time I totally cut gluten from my diet.
In the 3 years since then I noted that when on green juice only for a couple of days the node in my neck it would shrink slightly... This interested my but I really didn't understand. This node is very large and at times sticks out level with my jaw bone and has pushed my neck a little across to the other side. Gluten free I didn't really notice any major health concerns. Fast forwarding to this year I got quite I'll with some kind of flu and was stuck in bed for almost two weeks, during this time the node in my neck became huuuuuge but at the same time after going on antibiotics I noticed it shrunk a lot.. now looking back I realise this was because I didn't eat much while I was sick... but regardless it made me realise some things.
Firstly, the node was not an unknown tumour but still a functional node.. Over this 6 years I'd been having regular blood tests just to make sure this "'tumour" wasn't some cancer they hadn't been able to find. Over the years my eosonphil count had gone from high.. to chronic and I didn't seem to be able to control it. This year it was at the point where it had become a serious problem and my doctor and I decided we really need specialist help to control it or find out what was causing it. For the last 3 years my wbc count has been 35% eosonphils more than enough to cause serious intestinal damage if that's where they were concentrated as we suspected they were.
A few months ago we decided to do a parasite and bacteria stool test and it was actually while collecting this sample I noticed more or less nothing I'd eaten was well digested.. And the results came back clean for parasites and maybe worse.. bacteria free, My guts was basically sterile. At this stage my doctor was out of ideas but another local doctor decided to run an immune systems test on me and it came back that my IgE levels were over 4100 (maximum on the local scale is 200). This level was very surprising to my doctors as they felt I should be in not very good health with levels that high and covered head to two in eczema and also have some SERIOUS allergies that would knock me down if I was exposed to them.
Over those last 3 years and playing with my wbc counts my doctor and I had tried a few different things on the suspicion I still had unresolved food allergies, cutting out nuts, cutting out corn, cutting out lactose.. etc etc with no effect at all on my eosonphillia. But just before the immune systems test I had pulled one of the last straws and gone 100% totally grain and legume free and I had made the remark to my doctor that I had gained "the softness". For some reason my entire body quite quickly (within weeks) became softer, more elastic and more supple. Very noticeably so. Although at that time my eosonphillia was still 30%+ I personally felt like something important had happened so continued on my grain free diet which was basically potato, egg and veggies, also some bananas. I ate nothing else at all and nothing processed for a couple of months straight.
At this stage I had to undergo more testing for cancers with another doctor and happened to have a wbc again as part of the deal... At the time of the test the node in my neck was easily the smallest I've ever seen it.. Surprise of all surprises everything came back clear AND my eosonphil count was down to about 10%, which for me is unheared of, I've literally never had a result lower than about %20 in the last 6 years.
I celebrated my all clear on the cancer with a gluten free pizza and had a HUUUUUGE reaction to it. I couldn't stand up straight for 2 days for the cramps... Normally I wouldn't react to a gluten free pizza at all. The node in my neck 2 days later.... huge.....
As I've been reading more and more about this whole deal the last few months I now understand this was because my mast cells were all clear and waiting for my allergen and that gave the big reaction.
Where I'm at right now is about 10 days after the pizza incident and I'm again waiting for my neck node to come down and with it my eosonphil count... Currently I'm on a water fast to give my self a chance to heal my gut lining as the eosonphils start to break down. And this is about where my thread/blog will begin on my way to a cure. My plan of action is going to be. Water fast... Juice fast... then back on the potato for around one week solid. At this stage I expect my eosonphil levels to be low(ish) again unfortunately my mast cells will also be charged so I will have to be careful when I add foods in.. I allready know potato, egg, most leafy veggies and most fruits are safe foods for me. I'm quite surprised about the egg... it seems highly digestible and seems my body loves it, it's not a food I've eaten much in my life so I'm worried about it becoming an allergen if I over do it.. on the other had the nutrition in eggs is high so I will persists with them once I've done this couple weeks fasting.
I'm on a waiting list to have full IgE allergy testing but I wont be able to get into see the specialist until January so I'm hoping to have made quite some gains before I see him/her then. I'm aware that you can knock eosonphils down with drugs and that's generally the way you do it when in my situation but because I've already shown it's possible for me to break the cycle without drugs I'm going to give myself a shot at doing it drug free first. Stayed tuned and lets see how far towards gaining total "softness" I can go :!)
edit: I should add, I'm almost acne free for the first time in 20 years since cutting out all and I mean every single grain, legume and nut from my diet :! I will try adding back in rice at some point.. For some odd reason I did test yoghurt the week before my good wbc count and seemed to digest it well without any bad effects.. this I don't understand as I have real problems with any chocolate that has milk in it and it seems to me given my eosonphilia and previous anti lactose trials that I have issues with cheese.. the more casein the worse I would say. In any case for me the main deal is the chronic eosonphilia first, and extreme ige levels second. With the levels I have both will require some long term and fairly hardcore diet dedication.