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An Interesting Story And Introduction
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61 posts in this topic

Thanks for the updates.  It's always encouraging to hear when someone finds some answers.

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Another update, few weeks ago my bloods were 2100 IgE and 1.0 Eosinophil levels. The best yet. Not only that I totally fixed my low Neutrophil levels, which went from a consistent 1.4-1.8 to 2.9 !:), the highest I've ever recorded and smack into the normal range.

 

I also went to a new specialist to see about getting a more solid diagnosis on the Kimura's disease and ended up booked in for a bone marrow biopsy and core biopsy's of my neck :! and a ton of DNA and gene testing... great :S. Providing that shows up nothing I'll probably be sent to a rare disease specialist they mentioned. In any case I don't really need any of those tests because I'm learning lots and very close to smashing this away without any further doctor help.

 

My recent discoveries and learning are that ecinacea is POWERFUL. I am blaming it 100% for fixing my neutrophil levels.

 

I had to take a few more Metronidizole's because my SIBO came back, but it took more than a month to return and came back less aggressive than before so I plan to attack it again before it comes back next time, plus I want to do a course of Rifaximin, maybe combined. I've realised I need to fight this from multiple fronts, numbing the immune response (here I'm using zyrtec and claratyne which seem the most effective over the counter anti IgE agents), cleansing the system of "wrong for human bacteria species" that become the normal population in your gut after years of eating grain and then re-population of the right bacteria. It seems to me that simply trying to overcrowd one bacteria with another doesn't work, they have changed their environment (your gut and immune system) too much for a normal population to thrive. It's got to be a combination of killing them and healing and re-population. 

 

I'm trying to get hold of some suplatast tosilate which is an anti inflammatory / anti allergy drug which acts on the cytokines which recruit Eosinophils and also works against IgE, certainly not easy to find outside of Japan but I think I'll be able to import some for a test.

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So where was I up to?.. Oh yeah. ok so since I last wrote here I've tried a few drugs, seen a few doctors and had some more testing. As for my gut itself it's generally slowing improving, I'm no where near as sensitive to grains and sugars as I was this time last year, now I can eat limited amounts of corn and rice and sugars and my tongue is for the most part most of the time pink, not perfect but pretty good all things considered. I've been to a new specialist about my Kimura's disease and had another ultrasound, I was supposed to do an MRI and full CT scan but in the end we decided it proves nothing and I instead had a bone marrow aspiration (four of them) plus a bone marrow core biopsy. Great fun! (I don't recommend it) but it wasn't painful for me like it is for most people, just very bad feeling in a non painful way. The reason for that is to look for gene errors that may be the underlying cause of my out of control immune system, again this is mostly all caused by long term celiac disease but that's become a side issue now as the damage is done and it's just a matter of dealing with the damage as best as is possible. I've been reading up on Chinese herbs to rebalance the immune system but I'll wait until the labs do all the gene testing because I would say there's no use trying to re balance something that's hard coded broken. It may not be broken but I'll wait and see.

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Hello foam, I too have kimura's disease! Can you tell me the possible link to celiacs? It has been over a year since your last post. Do you have any updates on your treatment and prognosis?

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Hello foam, I too have kimura's disease! Can you tell me the possible link to celiacs? It has been over a year since your last post. Do you have any updates on your treatment and prognosis?

 

Imagine that!, years later and someone with Kimura's arrives. I actually came here to update everyone on how I was going and share the things I've learned. I've spent the last year/s reading reading and learning learning. I've gone up like 50 levels of understanding about food / intolerance's / gluten / grains and all these things.

 

I'm currently taking Tacrolimus for the Kimura's disease, it's in remission. I no longer eat grains at all.. as in never. Basically follow a Paleo diet + don't eat anything that bothers me. But I tell you what, I bet 99% of the people in this forum have an immune system disease of some kind, perhaps only in early stages but the signs are all there. If you cut of foods that irritate you and you still have problems well then that's a inflammatory state that isn't going to get better without more help than cutting out foods.

 

I have no pain in the gut or discomfort eating now. I've sent you a message regarding the Kimura's disease. Please send me an email to the address I gave you.

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OMG, I absolutely needed this topic in my life.  Foam, we may in some ways be one in the same.  I have been battling weight loss, loose sticky stools and generally reactive to a large amount of foods now for a year and a half.  Although visual flattening of duodenal mucosal was sighted,  going gluten free did not help.  My last colonoscopy showed minor patches of elevated eosinophils in the cecum, but it wasn't high enough for my GI to diagnose either celiac or eosinophilic gastroenteritis. 

 

I'm fascinated and have MANY questions to ask if you'd have the time, is this topic a good area?

 

Like do you take probiotics or digestive enzymes?  I  cannot tolerate any grains, even most complex carbohydrates at this time...... high amounts of sugar or fat can be very problematic.

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OMG, I absolutely needed this topic in my life.  Foam, we may in some ways be one in the same.  I have been battling weight loss, loose sticky stools and generally reactive to a large amount of foods now for a year and a half.  Although visual flattening of duodenal mucosal was sighted,  going gluten free did not help.  My last colonoscopy showed minor patches of elevated eosinophils in the cecum, but it wasn't high enough for my GI to diagnose either celiac or eosinophilic gastroenteritis. 

 

I'm fascinated and have MANY questions to ask if you'd have the time, is this topic a good area?

 

Like do you take probiotics or digestive enzymes?  I  cannot tolerate any grains, even most complex carbohydrates at this time...... high amounts of sugar or fat can be very problematic.

 

Hi, we can talk here sure. PM me if you want to email me. I'm a bit worried I've missed slackette, it's a terrible disease to have to go through without knowing other people with it and it's so rare that's hard to find. (there's a handful of us in contact with each other but no one is in the same country as each other).

 

I've been hanging out in groups where everyone has a immune system disease for a long time now and everyone is the same, only the disease (or outcome of the inflammation) is different. But basically it's all the same thing. Increased immune system hyperness caused by inflammatory foods and disturbed populations of gut bacteria and use of antibiotics early in life before the immune system has matured. It's really about that simple.

 

Now that I've improved enough to not be in constant pain I can tell much more accurately what are problems. Only in the last few months I was able to pin point grain based vegetable oils to be a major inflammatory compound. Stopping that 100% was a good gainer for me. Now I only eat natural animal fats or macadamia oil.

 

For me, with Kimuras disease the eosinophilia is directly related in numbers to my IgE levels. I've had huge levels of blood eosinophilia since.. well 20 years, like 30%+ WBC.  Sugars are a problem but you know since I changed the oils and bought a pressure cooker (and started tacrolimus) I wont lie the rapid improvement is mostly the drug. Well I'm practically better in all regards.

 

My IgE level has gone from 4200, to currently.. last test 3 months ago was 500. Just had another test the other day and waiting on results but it maybe down to 200 now. My blood eosinophil level has been .1 since starting tacrolimus (was between 1.2 (on antihistamines etc) and 3.5 (no drugs) previously).

 

Interesting about your inflamed eyes, I have had red eyes for many many years also bad skin, at one stage I was waking up very puffy, my nose would be twice as wide as when I went to sleep and my skin all just like leather but thin. Really hard times in the beginning. All fixed now though. I was always the kid with the gut ache so there been a problem there for a very long time.

 

By the way I have taken probiotics in the past and enzymes but I don't bother now, I do sneak a taste of dirt sometimes when I'm in the garden :0. Did long consider a fecal transplant but haven't done that yet. I do however steal any kind of half eaten spit on food my baby son doesn't finish lol he's very healthy so I steal his bacteria that way.

 

I wouldn't say I'm better in that I can now eat grains and grain oil.. because I'm just not going to eat that anymore. In fact over the last year both my mother and father have gone grain free and have much improved health. My father has/had strange balance and brain problems (undiagnosable) and my mother gut problems and arthritis. Both of them are 90% better now a year without grains.

 

I haven't fed my son grains ever since he was born. He's 19 months old now. He was very small until he started eating solids and since then he's gone from a tiny 5th percentile baby to in the 75th percentile and he's been growing at or above 100th percentile rate since the day he started on solids. He continues at 100% rate now. Pretty good for a kid with small parents. Everyone month he gets bigger and smarter than the other babies he used to be behind.

 

I've come to see the whole celiac thing is a bit of a hoax, no one gets truly better just cutting out gluten, because gluten isn't the whole problem. Yes the people with DQ2 have a problem with gluten, but we have a problem with grains full stop and highly likely to develop immune system disease if we eat grain.

 

The oils though.. that's a big deal. Trust me on the oils.

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I'll just leave this here. My sons growth chart (hes pretty lean but heavy). No grain, no cow dairy (he has buffalo and goat yogurt sometimes). But basically he's just on a Paleo/Autoimmune diet since birth. In the month since this he's crossed over the next line up into the 75th percentile.

 

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Good Evening!

 

It was my day off this week, lots of errands and.... laundry.  Congrats on two really good things tho!  The tacrolimus seems to really put a mellow down on your lab work levels, but it sounds like it physically is giving you improvement as well.  I had to google the weight for age papers.... surprisingly I'd never seen one before!  It probably is a huge influence that I don't have any kids yet I assume, but the growth being that its only been a couple months is impressive, its in a very good direction.

 

Yeah, I'm a bit of an usual suspect.  I have a slight elevation of eosinophils in one spot in my colon,  but when my bloodwork comes back I'm within healthy range (my platelets are low, but not low enough for anyone to see its of any concern).  The doc was trying REALLY hard to find crohns or colitis but the labs came back clean.   It kind of cracks me up because the GI tells me, "yes, during the endoscopy I visualized your duodenum was rough and flat, very suspect of celiac. It is a critical area of your body to neutralize stomach acid and stimulate other digestive juices" Then that week the biopsy comes back and his sample tests normal  =/  I started on a store digestive enzyme and it has really mellow my spirits and my cranky guts.  I'd like to think as you were saying, in that possibly I've been low on pancreatic enzymes this whole time and my body needs it or I have bacteria that don't belong and the enzymes help break them down or push them out.  I JUST got health insurance, my cards get mailed to me next week, in which I can start calling around.

 

When it comes to oils, did you cut out EVOlive Oil and Coconut oil as well?  I can't have very much coconut oil, I think its the fats as if I use it on a regular basis my stomach tends to burn.  Olive oil tends to be my staple for now. 

Also I think I feel your vibes on this but i'll ask:   did you at one point have to take anitbiotics?  any SIBO or yeast? One of my next tests I'm interested in the organic acids or fecal test for bacterial overgrowth,  if that hits positive,  I'm nervous over the idea of taking a pill (but I understand we gotta do what we gotta do, you know?)

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When it comes to oils, did you cut out EVOlive Oil and Coconut oil as well?  I can't have very much coconut oil, I think its the fats as if I use it on a regular basis my stomach tends to burn.  Olive oil tends to be my staple for now. 

Also I think I feel your vibes on this but i'll ask:   did you at one point have to take anitbiotics?  any SIBO or yeast? One of my next tests I'm interested in the organic acids or fecal test for bacterial overgrowth,  if that hits positive,  I'm nervous over the idea of taking a pill (but I understand we gotta do what we gotta do, you know?)

 

Yes I don't eat Olive oil anymore or Coconut oil. I went through the whole Coconut oil phase and I really didn't feel it doing anything good. Macadamia and natural animal fats are the gold standard for me. I've taken a LOT of different antibiotics and treatments for SIBO, I've even done two months of Diflucan and a few other antifungals. None of that helped, because none of that was the problem. The problem was / is a very hard to diagnose immune system disease which had been ongoing for probably my whole life or at least since childhood.

 

I figure you are always going to have bacterial overgrowth in the upper small intestine when there's damage there but the big lesson to learn is that Humans in nature have around 3000 different species of bacteria balancing their immune system and digesting their food. Humans in the western world are lucky to have 300. That's the primary reason we are sick with out of control immune systems, antibiotics in early life is the primary cause actually, taking them as an adult isn't likely to throw your immune system into chaos but as a kid it will.

 

I doubt I would have ever recovered without Tacrolimus and that's a very very potent drug, I don't think diet alone was ever going to be enough. Although diet alone is the only thing that's going to cure me now that it's under control.

 

I don't know if I mentioned up there but my Kidney function had crashed down to an eGFR of 50 last year thanks to the high levels of inflammation in my body, as Tacrolimus is toxic to the Kidneys it worried me. But thankfully my eGFR came back to 90 which is pretty much normal despite the tacrolimus. Having the inflammation is more damaging than toxic drugs it seems.

 

It's a little bit depressing know that so many of you out there are in constant pain in the gut like I was and that diet might not be enough and there's probably no doctors in the world crazy enough to give someone with a dodgy gut and nothing else they can find wrong immune suppression... But you know I think given that most of us are loading up on anti histamine and mast cell stabilsers and getting a part response... should really be trying something a little stronger.

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ezgoindude, you need to test out the Ketogenic diet. I'm finding it to be the cure all for gut problems and a lot of other problems too. It's too long a story to type right now but I'll send you a pm when I have time about what I'm eating in detail and how to get into Ketosis.

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