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An Interesting Story And Introduction
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61 posts in this topic

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.

Edited by foam
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When i was still on gluten, i would have these big cycst like acne things (that were painful no less). Doctors solution? put me on a long term antibiotic. Had no affect what so ever. Now that i'm on the diet, the huge ones have all but vanished (i believe when i get CC'd they come back). I still have some skin issues, but its slowly clearing up. I'm fine with that.

I'm not sure those issues with foods are some much allergies, as they might just be intolerences. An allergy would make you itchy, burny, swollen in the eyes/face/neck, possible breathing and tongue issues, and so on. If it were an allergy, you probably wouldn't be able to add it back at all. Just a thought.

Has that node been biopsyed? Have you been tested for thyroid issues? What about infections? I know nodes can become swollen when someone has one.

Just some random thoughts :)

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Yes it's been biopsied they weren't sure what it was 6 years ago originally but I've had some more tests on it recently it's definitely a normal but reactive node that's enlarged due to being under constant heavy stress, all my lymph nodes and blood for that matter (and intestines) are full of the same reactive cells. Because of my very high IgE levels my body has become able to call upon large amounts of esonphils quickly and that's compounding the problem of the "leaky" gut. I've been suffering with and my body has been evolving the immune system to fight these perceived problems for.. well at least 20 years to some degree so I don't expect to get out of it in weeks, or months but I feel I can get out of the main problems of it within a year or so. Once I get the eosonphil count down again and hold it down my gut should heal quite quickly.

I can't be sure what everyone elses IgE levels are like since most people aren't tested unless they show obvious eczma but you would think anyone with a similar problem would also eventually end up in the same situation I'm in.

At least in the case of IgE food allergens you can add them back in limited amounts once the immune system has forgotten about them. ie it's the same thing if you grew up in the jungle and you were drinking water with bacteria/parasites. Eventually you wouldn't have a problem with drinking it because your immune system would have built up antibodies.. However if you went to live in the city for a few years then went back home... you would be in all kinds of trouble. That's the same process. Once my IgE levels are down to say the levels of a normal asthmatic would have of say 600 I should be able to eat most things in limited amounts without much of a reaction. but at 4000+ even on a very strict diet every doctor tells me that will take perhaps a year or so...

One of the best pages I read about how to get out of the loop was this one from a doctor who has a clinic in Germany where you can go and get cured if you have a hard core case of "leaky gut" but the information I found there was enough to get me on the right track on how to reverse things http://www.encognitive.com/node/4988 a quite similar case to my own is here too http://www.biomedcen.../1471-230X/5/24

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Just curious if they tested you for TPO antibodies, which are present with Hahsimoto's thyroiditis?

Also, are your symptoms relieved by anti-histamines like Benedryhl?

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GFinDC, I'm not sure.. I have been tested for thyroid function a couple of times and as recently as 2 weeks ago, is the TPO the general thyroid function test?. The results of that test were "exceptionally good" in the Doctors words. I haven't taken any anti-histamines as I really don't have any symptoms apart from problems with digestion, the ever fading acne (I've almost totally won that war since cutting out my last grain which was rice) and intolerances to many foods, my doctor is generally anti drug so he and I both prefer to see if it's at all possible to get out of this condition somewhat naturally. I have had extremely high homocystine levels in the past when very b12 deficient although I'm not sure where they are at the moment (b12 levels are good at the moment but only because I've been on injections for years due to malabsorbtion...). The node in my neck is not related to my Thyroid gland imho, It just happens to be the first node in the lymph system so it seems to takes the majority of the heat. I went on a ~36 hour water fast and have been on vegetable juice today.. I'm taking 3x teaspoons of probiotics including soil based bacteria starting today. So far so good, probably tomorrow I'll start on a single solid food, I haven't decided on which food yet, it will either be sweet potato or potato I guess.

It might sound like I'm in quite bad health with all those levels of my immune system so out of whack but generally I mean.. I'm much fitter and generally healthy than the 95% of people my age. I guess because I've had no option but to eat very clean to be able to digest anything.. I keep telling my doctor "I'm winning" and he tells me I'm doing an excellent job of "treading water" and keeping everything stable without anything going out of control, his opinion is that I would be amazing if I could just get my wbc count down to normal levels. Although the last results I had back a few weeks ago I was absolutely winning !. I wish I didn't break the diet while it was going so good.. I wasted 3 weeks doing that. I'm actually very much considering eating fish / or chicken for the easy protein I'm just not sure which is the more sensible option nutrition wise and allergy wise. If I could eat one of those and digest it well then I would be quite happy to just eat (things from under the ground) and chicken/fish along with vegetables and fruit I think that would be a fine diet I could do well on long term.

I really want to break this cycle, I want to know just how well I would feel if I can manage to repair my digestive system.

Even if/when I do manage to get back in control and get the eosonphil levels down again on this new attempt I will restart this process once I can get hold of some of those German products mentioned in the link I posted before. I'll also take the anti fungals mentioned there. In theory my swelling should be starting to go down today (I'm nine days out since pizza day) and eosonphils only live about 8-12 days most of the time. Providing I haven't eaten anything I really don't agree with in the meantime and I don't think I have, they should start dropping any day now. Then it should be only a matter of continuing to resist anything that's an allergen to me and I should be well on the way to healing in a couple months time.

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I vote chicken- easier to control your sources and get organic. Also cheaper for the

good stuff and less problems in general with allergies/intolerances to chicken.

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I suggest that you look into super sensitivity to gluten. That might be one of your problems. Your situation seems very complicated.

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Hi Foam,

No, TPO antibodies are part of Hashimoto's Thyroiditis. Hashimoto's is an autoimmnue thyroid disease that attacks the thyroid gland. People with Hash's can have hypo symptoms and hyper thyroid symptoms. One of the things that happens is the thyroid is attacked and sometimes it swells upon one side or the other. The thyroid gland wraps around both sdies of your neck, in kind of a butterfly shape with the butterfly's body at the front center of the throat, and the wings wrapped around the neck towards the back of the head. Some people report the thyroid feelling warm at times when their Hashimoto's is flaring. Having really good thyroid numbers sounds suspicious. Can you post your actual thyroid test results here? Some people here have thyroid issues and can help you interpret them. If your TSH is very low all the time that could mean your thyroid is producing too much thyroid hormone, which indicates Grave's dissease or Hashimoto's. TSH is thyroid stimulating hormone and the brain makes it to kick the thyroid into gear to crank out more thyroid hormone. If TSH is always low then more thyroid hormone is not needed, which is not nessecarily bad but could mean there is too much of it for some reason also. Usually TSH levels flucuate somewhat within a range, but don't stay at a very low level for long.

How about your pulse and blood pressure? Are they good or are they elevated somewhat? If you have elevated thyroid hormone levels the pulse and blood pressure can increase some, or sometimes a lot which can be dangerouous over time. If you have hypo (low) thyroid levels then your pulse and body temperature may decrease and fatigue and weight gain are possible symptoms. There are many more possible symptoms than the few I mentioned, and you can find them by searching on hypo-thyroid or hyper-thryoid.

I find it kind of shocking that your doctor hasn't tested you for Hashimoto's Thyroiditis. But maybe they did and just didn't tell you about it. Doctors' don't always tell us everything, perhaps thinking we couldn't understand and would just be worried for no reason.

Anti-histamines are used for allergic reactions, which IgE reactions are. Hayfever and food allergies are IgE reactions. So anti-histamines ought to be of some use for them. Some people follow a low histamine diet. I don't have a list of low histamine foods for you but there should be some available the web or on this forum if you search it.

Celiac disease is not a food allergy tho. It is an auto-immune disease. The dfference being the immune cells in celiac are IgA and IGA type immune cells instead of IgE cells. It is not just a semantic difference. The different type of immune cells act in different parts of the body and cause different kinds of damage. IgE cells raise histamine levels and affect skin, eyes, breathing, and throat with swelling, redness, itching etc. In celiac the IgA and IgG type cells mostly attack the gut lining. or the skin in a rash called DH (dermatitis herpetiformis IgA). There are more possible symptoms of allergy tho,. so do take to time to search for lists.

There is a condition call eisonophilic esohapagitis also. Or something spelled a little like that :) That might be what is affecting you as it involves heightened levels of eisonophils.

I am not an expert on any of these conditions tho, so I advise you to do some research on your own and talk to your doctor about testing. Educating yourself is very valuable when dealing with medical conditions. Nobody is more concerned and affected by your medical condition as you are, including your doctor. So don't just go by what they say without investigating for yourself and seeing if it makes sense. Your doctor doesn't have to live with your condition, so he can't know your symptoms and reactions the same way you do.

Here's a web site with patient reviews of medicines that might be helpful. We aren't all the same so what works for one person can be devastating to another person. It id not a bad diea to tread carrefully when trying new drugs.

http://askapatient,com

I hope there is something hepful in this somewhere.

Also, thanks for posting to dcument your journey. I thinkit will be helpful to someone as we neve know who will have the same type of issues. And it is definitely interesting for sure. :)

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Thanks for the replies guys,

Today I have some updates. I finished my initial fast and started eating solids again. According to the German doctors protocol I should be now doing a single food for a week however I've decided I will speed things up slightly. In the last few days because I haven't had access to a good anti fungal drug for the intestinal cleanse part of the program I've been taking Nilstat (Nystatin), only the oral stuff you can get over the counter however I've been taking in in large doses (about 5x recommended (with ends up 500,000 IU 3 or 4 times day) which brings it up to about the same levels you would do with the prescription tablets) I considered since it's a safe drug that was worth trying. I'm having a little bit of stomach/small intestine burning but I'm taking that as a good sign, I've also in the last day or two started to have some grumbling and intestinal gas which is something that hasn't existed in me for a very long time, I'll also that that as a good sign that some of the bacteria is starting to stick and grow.

So me vs the Candida... I am winning although not winning enough. I went to update my original doctor on my recent success in getting my eosonphillia level down and following failure regarding the pizza lol.

Anyway the good news is the antifungal drug Diflucan is available subsidised for people with compromised immune systems so tomorrow I'm getting some of that and that in theory should knock the Candida out, more or less completely after a full course and that should help me repopulate my intestines with with probiotics I have, it's a reasonably hardcore drug though so I'll need to just be a little careful with it. I did want something a less/non invasive called Natamycin / Pimarican which is preservative E235 in some foods, it's similar to Nystatin except much more effective, unfortunately it's not available in my country in Medical grade, I am considering buying my own in food grade powder and making up the 100mg dose the medical grade capsules come in (or ordering in capsules from Europe). Because the Candida is heading the right direction I will withhold taking the Diflucan for a few days just to see if I can win in a less invasive more natural way first, if not then I'll hit it harder with the Diflucan.

Now about the node/s in my neck. the good new is that I'm WINNING (again) :). As my doctor said today if you ever get to the point where you are winning again do not change anything!! because the longer I can go like that the more chance my gut has to heal after the years long onslaught of eosonphillia. So as long as each day I wake up the swelling is less, that's what I intend on doing. He asked if I wanted another wbc count done or should we just just the neck as a gauge now? and I said I'm confident the neck is a very accurate gauge of my eosonphillia and he agreed, right now based on my experience I would say I'm at 15% eosonphils which is good (for me).

GFinDC, I totally agree, you really need to do a lot of self research in this kind of situation, I'm very lucky to have a doctor on the side that actually believes leaky gut is a real condition (not many do). About the Thyriod situation I will try and get those results written down for you so you can add your experience to that, I have been testing twice for something about my thyriod without having prompted anyone to do it so I guess they were suspect of something there, but both times it's come back good (fist time was good second time excellent?).

Although I will say in defence of the Hashimotos theory, my blood pressure is pretty much gold standard good at 105/65 almost always, resting pulse is 58 bpm almost always also, this was in the 48-52bpm range when I was younger but I'm not as active now at age 41 so I'd say the increase to 58 is ok, it's not a high pulse or blood pressure in any case. My weight is low with the malabsorption, I'm currently only 57kg (male) at 5' 10" (176cm) but on the other hand I'm a very light build and my natural weight as a young adult was only ever 60 or 61kg so I haven't dropped much in weight all things considered.

I believe my major allergies are grains (definitely wheat, corn), something in milk or casein and all kinds but I think for me one of the major problems is yeast and mould of all kinds, I did a test with brewers yeast and it didn't like me, perhaps also dust mites (maybe and maybe pet fur). About the yeast, when you have a damaged gut and Candida feeding off the damaged gut... which is a yeast, that can't be good which is why that's one of the major early goals I have in fixing this situation.

dilettantesteph, I actually did start eating chicken yesterday, after 20 years strictly without meat (100% never touched it) it was strange to see I could eat it without throwing up from a mental phobia or anything like that, for me the time was right and I'm treating it like a medicine in the absence of being able to eat much else I really reached the point where I had no option. So for now that is ok.

GFinDC, my IgA levels are slightly raised actually but only 20% over the limit or something like that, not 20+ times over the limit like my IgE is. The other antibody counts are within spec. I have read up on eosinophilic esophagitis and I'm sure what I have could easily progress to that or that I could have even started with that condition, but right now it's definitely all in my small intestine and lower. Above the stomach I have no issues currently and haven't for a few years, so I would say eosinophilic gastroentitis is 99% the problem, I'm sure, the doctor is sure. It's the same as esophagitis just in a different area. In my mind it's just a natural progression from Milk allergy into Celiac and then you get more damage and the esonphils come into more and more contact with food proteins. I'm sure it's all related and all the same thing in different shades, you can include crohns disease and ibs and all that other stuff, same story.

That's about all I know at the moment, I'll continue with the known friends of sweet potato (gut bacteria seems to LOVE this stuff), potato, egg, green veggies and my new medicine.. chicken. And keep on trying to knock out this Candida. I'll update again soon! but so far so good. As this has been ongoing for 6 years I can't get too disappointed if I have setbacks but I'm soooo close to getting ontop of this. I'm trying to do it before January, because in January I'm going to the allergy/immune system specialist and then I will more than likely be put on prednisone and or immune suppressants for the rest of my time and as my doctor told me today that's only going to mask the problem so it's important I get at least very close to a fix or understand all the causes before then.

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We have had to deal with Celiac and Eosinophilic Esophagitus diagnoses for a few years. Never count the eosinphil reaction to last under those 12 days (you also have to give the gut time to heal) EGID, Eosinophil gastro intestinal disease, they try and lump it into one disease term. The specific diagnoses is where the highest concentration of eosinophils are located in the GI track from the esophagus through the colon.

You just are going to have to do an elimination diet to figure out what the triggers are. (not a true "allergy" so most medical tests don't help the patient determine what the food or Airborne trigger is.)

In EE cases the best suspects for triggers are the top 8 allergens~, wheat, fish, shellfish, nuts, treenuts, soy, dairy, and eggs also gluten, and peas. Not easy, but it can be done. It is also time consuming especially waiting through a 12 day reaction. That gluten free pizza, depending on the brand may have contained eggs and/or peastarch which might possibly be your triggers for eosinophil production. Keep a very in depth food journal to help track down these possible "triggers".

Hashimoto's does present (classic presentation) with one side of the "butterfly" shaped thyroid being enlarged on one side and sometimes swollen nodes. Have any parathyroid test levels been done?

Some vitamin defiencies are linked to acne breakouts (zinc).

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There is now a proven link between Celiac and Eosinophilic Esophagitus. To the point any pediatric diagnoses of EE, should mean immediate testing for Celiac.

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mommida, thanks I'll keep all that in mind. I had started keeping a food diary but unfortunate did not during the time I was heading in the right direction. I was however eating a lot of eggs a lot of potato and still eating banana one thing I forgot was that I was eating a LOT of coconut oil on everything I ate and also taking it straight and also in my banana/egg smoothies. I remembered this today when I went to use the coconut oil and the jar is almost empty (it was almost full a month ago) and that's a fairly large jar.

Today my lymph node is quite swollen and I've had a headache for several days, ever since I started eating chicken.. I guess that's to be expected with that much protein and possibly quite a bit of it and other complex stuff entering my bloodstream. Yesterday I started the diflucan, I'm not sure if it's going to help but I really need to know is the candida is the smoking gun and if the presence of all that coconut oil is the key to the huge improvement I saw last month, I haven't been taking that for a couple of weeks now.

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Hey guys just thought I'd update you, I'm on about my 6th day of Diflucan. I felt like I was going to die for the first three days.. really tough, persistent headache, woozy feeling, pretty out of it actually and I never normally feel anything like that. But on the 4th day I felt suddenly great and have felt great ever since. My tongue is starting to clear up but only slightly and only on the front half. Given that the node in my neck shrinks whenever I take an antibiotic I'm guessing I have considerable bacteria in a bad way in my intestines. At the moment the node is still large but I currently don't have any stomach or small intestine pain and my cravings for sugars is going way way down, I'm actually not feeling any pain at all when I eat for the first time in years. I also ate some fish today and it really felt super nutritious, it really hit the spot so I'll get into some more of that.

I'm not sure if I can get rid of this bacteria with good bacteria alone yet but I'll run the course of diflucan before I decide what to do next since I'm no longer having any side effects from it and not feeling the need to eat sugar/fruit like I was. I also read about a disease of unknown cause called kimura's disease which seems to fit my description exactly although it's supposed to only really effect Asians and I'm not although I have basically eaten an Asian diet for decades I feel like it would be related to leaky gut or eosonphilic gastroenteritis anyway, the Kimura's part of the name only really refers to a benign enhanced lymph node full of eosonphillia the actual cause of the swelling is not known.

Diflucan is good stuff although it's not any kind of instant cure I feel like it's definitely helping me.

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Glad to hear you are feeling better. :) :)

I have heard HORROR stories about yeast overgrowth and terrible symotoms it can cause. :wacko:

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Hey guys, Had something interesting happen today, went to the doctors and asked to see the biopsy report I had done of my crazy node 6 years ago. I asked the doctor.. It doesn't happen to say suspected Kimuara's disease on there does it?... And bamm there it was..

Very interesting since the lab guys had nothing to go on apart from a few cells from a fine needle biopsy and they didn't know I had high IgE levels (neither did anyone until recently when I was finally tested) neither did they know I had high blood eosonphillia although I guess to them it was obvious because those were in the node. I don't even think they had access to the CT picture but probably were described it by the ENT surgeon that looked at it.

Now upon reading about this Kimura's.. it's related to ulcerative colitis somehow and also EoE. But the actual cause is "unknown" ie leaky gut or such (maybe) :). So reading more about it, it mentioned if you control the eosonphils.. you control the node... this I know.. pity it took me half a decade to figure that out, if only I had of been shown the biopsy report back then.. But back then no one cared, they only cared if the tumour was malignant or benign. To me on my own research over the years at least in my case I highly suspect it's caused by a bacteria because antibiotics control the node just as the eosonphilia controls the node, what causes the bacteria however is another story and that's my next step is finding out that. Now I'm also on this Zrytec drug which is mentioned here..

Cetirizine is an effective agent in treating the symptoms of Kimura's disease. Cetirizine's properties of being effective both in the treatment of pruritus (itching) and as an anti-inflammatory agent make it suitable for the treatment of the pruritus associated with these lesions.[4] In a 2005 study, the American College of Rheumatology conducted treatments initially using prednisone, followed by steroid dosages and azathioprine, omeprazole, and calcium and vitamin D supplements over the course of two years.[4] The skin condition of the patient began to improve and the skin lesions lessened. However, there were symptoms of cushingoid and hirsutism observed before the patient was removed from the courses of steroids and placed on 10 mg/day of cetirizine to prevent skin lesions;[4]an agent suitable for the treatment of pruritus associated with such lesions.[4] Asymptomatically, the patient's skin lesions disappeared after treatment with cetirizine, blood eosinophil counts became normal,[4] corticosteroid effects were resolved,[4] and a remission began within a period of two months.[4] It is also thought that the inhibition of eosinophils may be the key to treatment of Kimura's disease due to the role of eosinophils, rather than other cells with regards to the lesions of the skin.[4]

Very interesting stuff and something right now seems to be working.. might be a combination of things since I'm hitting it from every angle I can right now. Probably going to aim to have a bacteria swab from the back of my mouth and proper test for H Pylori to see if I can get more of an idea of exactly what I'm trying to knock out. I'm currently taking over 20 different strains of happy bacteria mixed in with digestion proof Psylium powder so they make it safely through the gut which makes a gel now that I'm on the diflucan that seems to be helping, I even managed to get the famous LGG strain finally. My doctor said I will need a liver and kidney test next time I go there after this time on diflucan. That's about it for now. I ate a pear yesterday... felt guilt, so funny considering a few weeks ago I would have polished off 10 pears and thought nothing of it.

p.s one more thing I remembered, there was nothing noted unusual about my thyroid on the CT scan I originally had and nothing has changed since then. I still have the pictures if anyone is qualified to read anything from looking at them ?.

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I made an error today, after feeling really great for days and days. I ate 3 pears and a bulk load of potato with skins.. I take back what I said before about potato with skins being good lol. Meat and veggies was working well, I'll go back to that although I am going to take a banana smoothie today with egg yolks. Hopefully todays failures wont interrupt my neck node shrinkage too much, because it had been gently but consistently improving again these last few days. I'm just going to have to bite the bullet and do a month straight on meat and veggies it seems. I think I'll get off the diflucan, seems like it's done all it's going to do. Might just take a once a week capsule to give a little helping hand without so much stress on my body.

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So the plot thickens.. I'm currently taking a course of antibiotics against Helicobacter pylori.

This is something I've taken before a couple of years ago and I had assumed this wasn't the issue since nothing changed. However I have noticed over the years that antibiotics made the node in my neck smaller and did so pretty quickly. Now the more and more I've learnt about how the eosonphilia levels and the neck node size are directly related to my eosonphil count. I've also noted that the more protein I eat the more the eosonphil, this part must be related to small intestine damage and leaky gut.

Now in theory antibiotics can not change your white cell count, it even says so on the pamplet, this leads me to believe and I can't see any other option than I have a persistent bacterial infection.. which I've already more or less proven since my tongue which is continuously white cleared up one day into this treatment. I'm not confident this course of antibiotics will work as it's only 7 days and 7 days is only JUST enough time for your eosonphil count to drop, no matter how much protein I eat it drops and drops totally, pity it's not long enough for your gut to heal and I figure I'm getting reinfected before I can tolerate the bacteria either from an external source (I don't have the best water quality as it's from a tank) or from residue bacteria that hasn't been 100% killed off. It would be quite amazing if all my health problems have been caused by this little pain in the ass bacteria all along. The only other thing could the SIBO Small intestinal bacterial overgrowth which they say almost everyone with irritable bowel and allergies etc has. Which causes which I don't know. My neck absolutely shrinks every time my wife makes her famous green juice with a ton of ginger in it for a couple of days in a row, I never put the two and two together before (the ginger component that is), suspicious.....

On October 29th I got this Helicobacter pylori kit and took it for one day until my wife reminded me I've already taken that. So I got off it as I was trying to build my intestinal flora, I've got enough antibiotics to replace the missing pills from the course so that's ok. Anyway it was on November 5th that my node started rapidly shrinking for no apparent reason and on about November 10th I received a decent WBC with lowish eosonphilia for the first time in at least 6 years. At the time I thought my simple potato diet was curing me...

By late November My count was back up to very high levels.....

Now I can't say this is definitely a case of Helicobacter pylori but it seems definitely bacterial and given my food intolerences and stomach/small intestine burning on eating sugar or salt you would almost have to say it's highly likely. I've not so long ago had a stool test and thought they would have tested for that, maybe they only looked for true parasites. It will be awesome if that's the problem and if it is that might be of considerable interest to a lot of people on here. If my immune system wasn't so reactive to this and developed the neck "tumour" I would have had ZERO idea at all because I wouldn't have even had a WBC count done and would have just figured I had ever worsening food intolerances.

The diflucan seemed to improve my overall health so I figure I had some mild Candida problem at the same time.

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I've got a blood test coming up tomorrow, will do a standard white cell count and see where I'm at. Prediction based on my neck is... 1.7 maybe 1.5. I'm on Zyrtec to lower my antibody levels.. long story but after reading a few medical journals it seems Zyrtec (http://en.wikipedia.org/wiki/Cetirizine) is more than capable of dropping your IgE levels hence making you non-allergic to things within a few months of taking it daily. It's even "cured" chronic asthma no problem at all. For me that's a much safer and better option than steroids, it just wont work as quickly.

The antibiotics seem to induce a "pause" in my problems, not sure why but think it's a side effect because of having bacterial imbalance in my damaged gut. Anything thing I've noted, sauerkraut is probiotic wise, much more powerful than Yoghurt, especailly when you are a bit dodgy on milk protiens, get that stuff into you. It's cheap, good, powerful, way cheaper than capsules etc.

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So brothers and sisters of the leaky guts. I've had my blood test and I also had the antibody test for Helicobacter incase this is the root cause of my problems and Strongyloides (incase I need to go on immune suppressants).

I will have results of all three in a week or so. In the meantime I've been taking Zyrtec daily for about a week. This is some pretty amazing stuff... It's really limited the allergy reaction I have to foods, so much that I've gained 3kg in the last week!. I can still make myself sick by doing as I did today.. eating handfulls of nuts for a test to see how far I could push it. I certainly found the limit.... ouch. The node in my neck is only about 1/4 the size it was pre Zyrtec already. Bad news is my white tongue returned :( but that's just a side effect of a dodgy gut, I'll deal with that later.

It seems to me that eating the normal foods that keeps me stable at 30% eosonphillia, well with the Zyrtec I believe I'm running at about %15 esonphillia but the test will prove exactly what difference it makes. I plan I taking Zyrtec for several months and also once I gain enough weight going back on a very very low allergy diet. If I can keep that up for a few months, possibly 6 months I should be able to get myself into a position where my IgE levels have come down enough that I'm about half as allergic to foods as I was.. and with the Zrytec cutting the reactions from that point on I should be able to cure all my allergys quite soon after that.

I have an appointment with a specialist on jan 31st where I expect I'll have the immunocap antibody test and then I'll know my major allergies printed out in real numbers in black and white and then I'll know what to especailly avoid so I can heal my gut. Another effect of the Zyrtec is that I no longer have crazy itchy skin! first time in at least 20 years I haven't been tearing myself apart... I said to my Father.. if this is how it feels to be a normal Human, I've really been missing out..... Hope I get a hit on the Helicobacter antibodies really as that would make life easier if these a common root cause to all this.

Anyway if you want some relief I would highly recommend an antihistamine and especailly Zyrtec or something else with Cetirizine in it as I've thought back in time it's been the high levels of Histamine that have been giving me pain ever since I was a small kid

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I'm glad the Zyrtec worked for you. Didn't do a think for my daughter or I except for me to cause insane hives. I have never itched so much in my life than when taking that stuff. And then when I tried to stop it the itching got worse! Took about two weeks to get it all out of my system.

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HI guys bit of an update, negative on helicobacter but my eosonphil count post 5 days on Zyrtec came back 1.8 (I predicted 1.7) down from 2.2 last time on my normal non starvation diet. So that's good, the Zyrtec continues to hold my levels lower than that now after about 20 days on it, I've thinking it's holding me in the 1.2-1.5 range which is very good for me when eating normally and gaining weight. I haven't had any digestive problems or stomach pain etc since I've been on it and my itching skin and sores are totally "cured". But I was after some advice on something else I noticed on my blood results (kidney results actually). my bicarbonate levels are quite high, just slightly out of range on the alkaline side of high, I understand this means your blood and body as a whole is very alkaline and as I understand the chemistry of the gut, you need things to be neutral or even acidic for beneficial bacteria to grow well and that candida and fungus is general love alkaline environments. Have any of you tried before to alter your body's PH and if so how did you go about it?. As I mentioned before until very recently I've been on a highly alkaline vegetarian diet for more than 20 years with no alcohol, added sugar or salts. I've got bicarbonate results from 2006 and now and it's been persistently high, I'm looking to try and bring that down into the middle of the normal range if possible (without going crazy and turning into a junk food eating beer drinker :!)

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Maybe try to limit tomato. People I know of people who are alkalizing who drink V8 for the potassium, and take magnesium supplements along with it.

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I haven't eaten tomato much in a while but I did used to eat a few of them per day in the past no doubt. I was reading something about a chloride salt to acidify yourself, my bicarbonate levels are constantly 31-33, it seems 24 is much more ideal for good health?. From what I read anything over 29 is not so good at all. I'll need to do some more reading into this to see what exactly is going on. Of course I guess this could be somehow related to having super high histamine levels all my life without realising it. Although after having been to the dentist last year for the first time in 25 years and having found no cavities or damage other than slight wear in the enamel from brushing you would have too say I've been quite alkaline for a long time

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GFinDC, I do have something for you regarding the Thyroid too, but all I have is this

Thyrotropin : 2.14 mU/L reference range (.30-4.00)

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Hi Foam,

I am not an expert on thyroid issues but it seems your thyrotropin (TSH) level is good, it is in range.

I am kind of a skeptic on the alkaline/acid idea myself. Our stomachs have hydrocloric acid in them to help digest the food we eat. That acidic food mixture gets dumped into the small intestine. The liver (gall bladder) injects chemicals into the small intestine to nuetralize the acid. I think it is somewhat common for people to have too little or low stomach acid. One treatment for that is Betaine HCL.

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    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
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