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An Interesting Story And Introduction


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#1 foam

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Posted 29 November 2012 - 08:59 PM

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, 29 November 2012 - 09:12 PM.

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#2 shadowicewolf

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Posted 30 November 2012 - 12:00 AM

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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#3 foam

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Posted 30 November 2012 - 01:30 AM

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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#4 GFinDC

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Posted 30 November 2012 - 06:57 PM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 foam

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Posted 30 November 2012 - 08:38 PM

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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#6 JNBunnie1

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Posted 01 December 2012 - 07:33 PM

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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If you're going through hell, keep going. ~Winston Churchill

#7 dilettantesteph

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Posted 02 December 2012 - 06:31 AM

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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#8 GFinDC

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Posted 02 December 2012 - 11:41 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 foam

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Posted 03 December 2012 - 10:07 PM

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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#10 mommida

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Posted 04 December 2012 - 02:16 PM

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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#11 mommida

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Posted 04 December 2012 - 02:17 PM

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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#12 foam

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Posted 06 December 2012 - 09:10 PM

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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#13 foam

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Posted 10 December 2012 - 08:40 PM

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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#14 mommida

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Posted 10 December 2012 - 08:44 PM

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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#15 foam

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Posted 13 December 2012 - 02:34 AM

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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