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An Interesting Story And Introduction


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52 replies to this topic

#31 GFinDC

 
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Posted 02 February 2013 - 08:22 AM

Hi Foam,

I don't remember if you checked into dermatitis herpetiformis yet? It sounds like your new doctor is going to do some investigating and testing. If nothing turns up positive, at least some things will be eliminated. So that's good. I was kind of surprised you ate out at a restaraunt. When I do go out someplace if I am trying to eat a safer meal, I will sometimes order side dishes of vegetables only. And take a banana or orange or apple with me also. Maybe order a drink of some kind too. That way I can eat with my friends and not take a big chance with the food.
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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

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#32 foam

 
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Posted 02 February 2013 - 01:42 PM

Wow I hadn't even heard of that one before.. My sores don't look like the typical images on google but I guess I could have a variation of it. I'm pretty careful eating out, I just ate vindaloo and rice, which should be pretty safe. I've actually tested eating wheat in the last few weeks and it doesn't seem to have any pain at all associated with it like it used to when I would eat it 3 years ago. My eosinophilla at this time seems to be related to how white of pink my tounge is ! oddly but with a delayed reaction.... I'm not sure what's the time frame between eating something and and increase in eosinophils and the node in my neck getting bigger... But it's definitely shrinkable with diet and or drugs lol!. I do fit the picture for this dermatitis herpetiformis other than it not looking typical... very interesting. But why would it persists after I've avoided gluten? I guess to be fair until the last months I've been eating other grains.

I honestly never pictured myself having that big of a problem with gluten, I wouldn't have thought bad enough to show up on testing, yes sure I knew I was intolerant but it only ever gave me a slightly weird brain thoughts and diarrhea, sometimes with badly with a mind altering state where I forgot who or what I was.. but I never had anything like you read about with people getting sick just touching the stuff.

I've no doubt whatever my problems were originally caused by gluten... and I'm guessing this new doctor thinks the same, just don't really know what exactly is going on now but I'm getting very close both in being able to semi control the effects and narrowing it down with testing.

All I really go on myself is size of the node in my neck because that tells me exactly my eosinophil level, my eyes (if they don't make mucus in the mornings I know I'm not well sometimes I can go for months without that working but recently has been good). My tongue !, if it's pink I'm doing better and my skin lol.

Zyrtec cures my skin pretty much 100%
Eating zero sugar and exercising a lot helps my tongue, it's actually constantly improving, it was VERY fury a few months ago, now not too much.
My stools, I can get them perfect with a ton of probiotics but I can't eat that many probiotics unless I culture them up first and to do that I need a yoghurt and to do that I need milk or soy (actually I'm going to try and perfect it in coconut) but I'm scared to change anything right at this second because my eosoniphils are the best they have been in a long long long time (many years) right at the moment.
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#33 janpell

 
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Posted 03 February 2013 - 05:48 AM

"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"
Where did you find this doctor? I need him or her, lol. Seriously, I had swollen lymph nodes in my neck for close to 10 years. When I first when to my dr I got a "It's because you pick your face". I should have responded with a "Why do I have acne at 30 anyways?". Funny thing was, I wasn't really picking my face and the sores were just happening. Cut away many years to when my arthritis was very bad and I started to react to medications. I tried an elimination diet and my lymph nodes were normal within 10 days! It took longer for everything else to clear and I am still working on it two years later but I have been eating things wrong all my life so I'm sure it will take some time.
Back to you. What progress and lucky you have a doctor who is listening to you and is actually "perplexed" so his arrogance didn't take over because he didn't have the answer. Funny, I call the doctor who doesn't have the answer to be a good doctor. I remember asking one of my doctors "Do you think it is my food?" and because I look healthy and am thin I got a "silly girl" look and "No, it isn't your food. You eat right, right? It's genetic." My wrong though for not following my own instinct. His wrong for not being open.
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#34 foam

 
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Posted 03 February 2013 - 08:08 PM

Hi Janpell, I'm doing all those tests tomorrow down at the hospital but in the meantime I absolutely managed to trash my neck in the last couple of days ! not sure how. I do have a list of things I ate so I think I can narrow it down.. Now in my last few weeks I have been dipping my feet into test eating gluten, just a slice of toast or something and it hasn't seemed to do anything at all to me. (I've been off it 3 years). But it seems perhaps the yeast is more a problem right now. The suspect meal I ate the other day was a hamburger no sauce (although they did put some mayo) and I choose to test normal buns rather than gluten free bread because I don't think either is good for me, so I wanted to try it out I shouldn't have a problem with mayo technically since I can definitely claim egg as a safe food.

Anyway that was Friday and I didn't wake up with an improving neck node Saturday morning as I had been for the last few days... it was worse and continued to get worse all day followed by massive itching last night. I had no reactions at all to the skin prick test until the next day and until now I still have one site swollen... I called the doctor and asked him what that site was and he said it's Candida but it's normal for that one to have a delayed reaction, it doesn't mean anything... That's quite interesting for me. Anyway despite still having to do all those tests he thinks my neck and my gut are separate issues but he's not sure what's going on with the neck and he thinks because it hasn't changed in 6 years then don't worry about it but have another needle biopsy just incase they can find something this time at least and maybe a another CT scan because technology has improved since then. he doesn't think it's worth pursuing beyond that because I'm just to healthy to have anything aggressive. But first lets see about the blood tests because they will show up an auto immune condition in theory if there is one.

The thing is he's not me and not seeing the changes I go through from day to day in both the neck, the itch and how it all varies with food (which it totally does). In my opinion I'm quite convinced _everything_ is related to food protein intolerance that my body is picking up as parasites and that the persistent esinophil attack simply pumps my neck with more cells than it can drain.

The weird thing is I'm already generally on a very limited diet just based on things I think are the major problems. What I'm going to do now is pay a great deal of attention to my gut and any pain I may have after eating.. if I get pain it's out.. I'll make it as simple as that and I'll cut out fruit 100%. This is going to mean a bulk load of sweet potato eating in this next week :)

In 3 more weeks I'll go back to the specialist for more testing and he's going to help me with a diet plan. After that it seems like I'll be back with my original doctor who is fairly quite sure like me that is a permeable gut causing everything. So I think if I make it that far still a mystery case I'll just through it with him. I actually think I'm going to ask to be treated on suspicion for "Kimura's disease" or an immune condition with a steroid trial... he wont like that idea but has said before he will do it if I want to dump my eosinphilia down, at this point I think I might need that to get my antibody level down to a point where I can "start again" as it were. First I need to have the IgE retested to see if I'm made some improvements in the last months. If I have then I might just continue on Zyrtec, if that's working it's a slower road but a safer one.

Every doctor keeps telling me just don't worry about it the fact you are still alive means it can't be anything serious.... but I'd really like to have normal blood results and no swollen neck node ! if possible
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#35 foam

 
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Posted 09 February 2013 - 03:45 AM

Hey guys well I'm not doing so well all this week. Pretty painful in the guts actually, the doctors have decided I've got this Kimuras Disease and that it's been caused by leaky gut/esonophilic gastrioentitis and all the above probably by candida. We've decided (and yes my anti drug doctor too) that I need to do a 6 month course of steriods if I'm ever going to recover and stop further damage being done to my body from the eosinophilia. Its the only sensible way to get my IgE levels down to a less damaging level. I'm going to do a low dose predisone + cyclosporine combination with bi-weekly kidney etc checks. Bit scary I must say but I think at this stage it's the most sensible thing to do because I'm really feeling the heat at the moment from this eosinophilia. Once we get the immune system response down and get some weight back on me, then we are going to sort the Candida right now I'm a bit thin for the radical diet and length of time I would need to wipe it out.

We are expecting to normalise my white cell count in 2-3 weeks and then the rest of the time will be to drop the IgE levels, hopefully to halve them.
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#36 Celiac Mindwarp

 
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Posted 09 February 2013 - 03:49 AM

Good luck with the programme, let us know how you get on
Mw
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#37 foam

 
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Posted 23 February 2013 - 04:37 AM

Hey guys, so only a few more days now until I start my treatment for Kimuras and lower my IgE levels. In the meantime I recovered from the last time I ate out about a month ago and my eosonphillia and neck is back down to normal kind of levels (for me) and my gut has stopped having holes burnt through it. 

 

I've been feeling great for at least a week straight. I'm a bit dodgy at the moment because one Dr wanted me to do a yeast challenge and eat some Bakers yeast, which I did and so I'm a bit sore at the moment. At least its confirming yeasts are what's causing the majority of my problems. But I can control the symptoms now with heavy handed amounts of probiotics.

 

I'm just working out what dosages of steroids we will do because Kimuras is such a rare thing, I'll never find a doctor in my country that's seen it before so we have no option but to go off research papers on the net.

 

Until the yeast challenge I had been following a yeast free diet strictly for 3 weeks and had been feeling so good itch wise I hadn't even taken a Zyrtec at all in that time. I've upped the anti in my probiotic technology and started making LGG and probbaly L plantarum also in Oat milk. The stuff is sooooooothing to the maximum. I'm also still doing the soy yoghurt. I've found that if I do 1 or even two litres of that stuff a day I make rapid improvements. (Mebendzole continues to help when I get on it don't know why other that it's anti fungal). Once I finished the big dose stage of the steroids I'll do long term Amphotericin b to keep Candida low + start probiotics again.

 

Basically all I'm eating at the moment and it's working great is. Roast Chicken + all it's fat, Various high powered home made non dairy probiotics. And some veggies (cabbage is best). potatoes seem fine still. Sweet potato is BAD, tried that... never again, far far too much bad bacteria action gets going with the sweet potato for me. Ginger is still the best natural anti fungal. I make one litre of green juice with a whole ginger root in it... It's got some kick in it but it temporarily cures me really quickly. You can't play low dose with ginger like tea or something silly like that. You need to get that stuff right into you in a big dose. It's really powerful when you do that.

 

Anyway I'll update again when I'm loaded on these drugs since they say I wont be able to sleep for a while. I'll need something to do :).

 

I'll also have copies of those 11 tests of did a couple weeks back to ponder over early next week.


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#38 foam

 
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Posted 24 February 2013 - 06:51 PM

Hey guys just another update, got the results back from my current IgE levels. I was expecting to have improved since I have learnt a lot about my body and what it feels like with different levels of stuff in my blood, recently I've regained the "softness" as I call it when all the tissue in my body is supple and my skin is stretchy like a wild animal so I knew things were going well. But this was quite unexpected to say the least.. My IgE level in October 2012 was 4100, Mid February 2013 it was down to 1900. Eosinophils are still high but there must come a point soon where they drop, they have dropped a bit. My doctor and I had a planed/hoped to reach 2000 IgE after 6 months of intensive steroids so to do it without them in 4 months is pretty good! :).

 

I'm sure we can blame most of the improvement on long term use of Zyrtec because according to all the research papers I've read it will drop IgE and eosinophil levels eventually if you stay on it long enough. I'd like to think my recent expertise in probiotics and yeast free diet has helped too.

 

My doctor is taking a week off work sick leave this week so no steroids for another week, at this rate I might not need them at all. Lets see how I'm doing in a weeks time and when all the results are back.

 

Anyway that's some useful information for someone who reads this in the future since it's a huge improvement in a relative short time so I thought I better write that down. I'm quite excited just to tell somebody too :D.


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#39 foam

 
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Posted 03 March 2013 - 11:25 PM

Hi guys I'm back! well we decided to not do steroids today and give Zyrtec another month to do it's magic. Will do another IgE test in a months time and see if there's a consistent improvement happening or if that was a fluke + some kidney testing.

 

Oh by the way my gene testing for Celiac came back positive. I figured it would, nice to know scientifically gluten caused all my problems, I knew it did anyway but good to have some extra confirmation.

 

All those other tests were negative. So that's good.


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#40 foam

 
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Posted 19 March 2013 - 05:08 PM

Hello!, little update. I'm doing well at the moment. I stopped eating potatos, I reached a point where I didn't need them for the energy any more and they were starting to do me more harm than good (starting to have pain when I ate them). Big gain since I stopped eating them actually, I really needed them during elimination testing but I've overdone them now.

 

I've actually done something strange and started eating oats (certified wheat free etc ones) which hasn't given me any problems yet. I'm not sure how that's going to go long term but there's a lot of things in oats that interest me regarding immune system balance and bacteria growth so I thought it's worth a shot. Still on the Zyrtec and still feeling sleepy on it. I also started taking digestive enzymes + HCL with meat and it's pretty good stuff. It's helped my stomach get some more power in it on the days and meals even when I don't take the enzymes.

 

I light of my confirmed Celiac I've decided I'll see about a course of amphotericin B and neomycin next month to try cleanse the small intestine and give it a chance to heal some more. Got another round of blood tests in a couple weeks so see how the IgE and everything else is doing.


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#41 ladymiss

 
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Posted 31 March 2013 - 09:26 PM

hi foam,  thanks for documenting your story for all of us. It was an interesting read, so far.  sorry to hear of all your suffering!  I know your story will help others in search of clues!  best wishes for your health and recovery!


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Lactose Intolerant 2004, Gluten Intolerant 2010
Negative blood test for Celiac 2011, but incomplete testing....
All recent: Soy, casein and egg sensitive. Peanut and Shellfish allergy.
Still learning about what all this means....


Barn's burnt down-
now
I can see the moon.
Masahide, Japanese poet, 1657? 1723

#42 foam

 
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Posted 02 April 2013 - 07:58 AM

Thanks ladymiss, I had a new round of blood tests today. I'm expecting a further improvement and interested to see what my kidney function looks like now that I'm eating meat and it can be accurately tested hopefully it's better than it appeared on paper before.

 

We discussed options today and if I continue to improve well then we will just continue with the daily 10mg of Zyrtec it's a slow slow slooooooow way to recover but at least it's safe compared to the strong immune suppressants. I started on (large) doses of vitamin C over the last week and it's probably the biggest gain I've made so far. I'm taking about 3 grams a day which is quite acidic and raw and painful feeling on my already raw gut, but it's working so I will persist. I've even seen a short term gain drinking diet pepsi as an anti candida acidifying medicine before lol which is actually why I thought I'll try Vitamin C, mostly to acidfy my gut rather than for the nutrients but then I read it in large doses it suppresses some things in the immune system that I'm trying to suppress and improves some things I want to improve so seemed double the goodness to me.

 

I'll write more about the vitamin C in a week when I get those new results back just to give it time to make sure the apparent gains on vit C haven't been a random fluke. But I'll give you an idea. Within the last 4 months the tumour in my neck has been without any exaggeration as large as a tennis ball at times! tonight it's less than a chopped in half table tennis ball in size... that's crazy good smallest it's been in 6 years BUT it's at times like this when it's really small that it usually goes mental and I could wake up with it the size of a tennis ball any day now.. I hope not but it's happened before. I've had such a hard time trying to keep the improvement improving. But yeah, the vitamin C theory has got me further than I've ever made it before. Usually I'll get itching so strong it'll break straight through the resistance of a Zyrtec when it's about to go mental and I haven't had that yet so, so far looking good for tomorrow at least :! :D.

 

These last couple weeks I'm eating oats and rice occasionally otherwise still on a SCD type diet. Not doing Nuts, legumes or anything heavy on protein and hard to break down like that.

 

I did mention to my doctor that so many people on the celiac forum have auto immune disease and he said that when he became a doctor there was no such a thing, he said maybe it was ignorance but his feeling is that something in our environment has changed since then and it's effecting the immune system a lot because he said every single year auto immune disease is becoming more and more common.


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#43 foam

 
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Posted 09 April 2013 - 06:54 PM

Hey guys, didn't improve this last test. Well the IgE results weren't in yet but Kidneys and Eosinophils were still bad. The good news is that my persistent dodgy tongue is persistently "better" and that My Neutrophil count was within normal range for the first time in a few years other than that time I got my eosinophils down by some lucky unknown reason late last year, so that's something, it went up from 1.7 to 2.4, first time over 2.0 in a long time, percentage wise that's a huge gain. I will put that down to the Vitamin C for sure because my tongues been "better" not perfect but better ever since I started on 2-3 grams of Vit C a day. I've also been doing multivitamins again. Other than that I've done nothing different. We are kind of doing last resort treatment at the moment and just doing trials with relatively harmless anti "stuff" drugs and doing blood tests after each drug to see if we can narrow down a base cause for my leaky gut and kimura's if not well then it'll be cyclosporine I guess.

 

Basic antibiotics and mebendazole have helped a bit in the past (dunno why). But in light of that we are thinking bacterial overgrowth is the reason my gut wont heal so I'm doing a full week on metronidazole now, then another test, then vancomycin, another test, then I'll do Ivemectin just because it can cure some weird and wonderful things sometimes. All those should give me a sterile gut bacteria and parasite wise anyway, is that good or bad? well will will find out. If non of those alter my blood work and uncover a bacterial problem or very small parasite cause then I'm putting it down to simply auto immune at this stage. metronidazole is weird stuff, no side effects so far on the second day by strangely alert and clear headed.


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#44 foam

 
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Posted 10 April 2013 - 07:40 AM

Man.. talk about side effects coming hard and fast with the metronidazole (and leaving hard and fast). Massive gut burning during the later half of the second day, like I normally have but worse x 10. I'm quite bloated but now pain free (better than usual) and feeling great again :!). I've got the much raved about metal taste now. This stuff is supposed to cure SIBO most of the time, 5 more days lets see what it's got. I also found a fairly new research paper where they cured someone with Kimura's disease with only steroids and a single shot of IVIg, something to remember for future reference and worth noting for when someone else frustrated and looking for a proper cure finds this thread in the future. First things first though and fix this gut before the secondary disease.


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#45 foam

 
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Posted 11 April 2013 - 08:39 AM

I tell you what guys.... I might be on a winner here. Seeing a substantial drop in the size of my neck node, smallest it's been since last November and getting smaller by the hour. Not sure how much the metronidazole knocks your immune system around normally but _something_ is happening. It really hammers your gut though, quite painful for a while after you take the pill. I've taken this before but not in such high doses for a such a long time. Probably will only be a temporary effect but you never know, I maybe hypersensitive to something this stuff wipes out.


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