Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

An Interesting Story And Introduction
0

61 posts in this topic

Hey guys I've been running a pretty tight ship diet wise the last couple of weeks and am doing pretty well, my eosonphilia is down quite a bit. I took another course of Mebendazole but took a fairly heavy dose of it this time to knock out anything suss like Giardia, I read Mebendazole is also a very powerful antifungal too, much more effective than Diflucan against candida at least invitro apparently so whatever I took 200mg 3 times a day for 3 days which is supposed to be enough to knock off Gairdia without knocking myself off :0. Whatever it does it had a positive effect, I think against fungus as for the first time in a long time my tounge is 50% pink.

I'm making pro biotic Soy yoghurt now because I'm sure Milk protein is a major issue for me, I have been able to digest yoghurt but I still think I have considerable antibodies against and I'm sure I have less (but still some) against soy protein so choose between to evils, I'm going with the soy, I've not been able to find another way to culture biotics yet but am about to try Rice milk which if it works will be even better. Other than that I'm eating TONS of cabbage which I can tell is a really really a good thing. I'm still taking a daily Zyrtec and still having next to no itching and my skin everywhere is quite smooth and healed up as a result. I haven't had any antibody level test since I've been on the Zyrtec but I will have one in the beginning of February to see if I've made some improvement.

I'm going to see the immunologist/allergist in a week for his opinion, apparently there will be no testing done at first, I'm just presenting him with all my history and paperwork for him to consider things first. Hopefully soon I'll be able to find the root cause of my problems, whether it's permeable gut, chromosome error, parasite or all three ?? I'm reasonably sure there are no (common) parasites unless you count candida and other yeasts which I'm sure are a major part of the story. Until I can seen the result of an IgE test that shows huge amounts of antibodies to some food/s I'll always be suspect there's a mystery non gut parasite but until then I can't do anything more about that so will continue to run a tight diet food allergy wise.

So my good things of the month are Mebendazole, Cabbage, Ginger, Soy probiotics and Coconut oil which is amazing stuff against whatever it is I'm fighting against lol, because my best least allergic high calorie food seems to be potato soaked in oil, I'm going through half a litre of coconut oil a week :/ . Red meat is good, fish so-so, Chicken I think is a failure. Red meat seems to do a couple of things other meats don't 1) digest very easily, 2) increase my stomach acids power ALOT. Other than the soy milk based yoghurt, the only grain I've eaten the last couple weeks was a little rice because I went out for dinner and vindaloo seemed the safer option of anything on the menu.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hello! Well today is the day when I finally might get some help from an expert. I'm going to see a specialist Immunologist/Allergist doctor about my problems. I've got a heap of paper work with me to give him some idea of what I've been dealing with and I'm hoping we can get to the bottom of this. I am very much leaning towards an immune reaction to Candida/SIBO at this time as well as many many mild multiple food allergies and probably dust mites as well. I don't really know what he's going to suggest I do but from what I've read he's a fan of hardcore exclusion diets. As this suspected "disease" in my neck is often associated with Candida I expect I'll be going sugar free too. I had to go off my Zyrtec because I'm going to be doing some allergen testing... oh man the histamine itch, how I had forgotten about you.. :P can't wait to get back on the Zyrtecs actually, I have a 50 pack here ready to go

0

Share this post


Link to post
Share on other sites

Foam,

Interestng "mystery non-gut parasite" would seem to connect to eosinophils that you mentioned "eosinophilic folliculitus". Eosinophils are usually reserved to fight parsites and the egg stage is free roaming in the host.

Keep me informed if you find something out!

0

Share this post


Link to post
Share on other sites

mommida, the mystery parasite certainly does fit in the picture.. the problem with it is... I lived a very isolated life early on. Well not isolated but I got sick before I was exposed to many people or different areas of the world where I could have picked up a large enough mystery parasite to cause eosinophillia. On the other hand it's not terribly uncommon to have all the symptoms of a mystery parasite when you are atopic + have leaky gut because as far as your body is concerned food proteins ARE parasites. So while the bodies reaction is identical in both numbers and IgE levels the cause isn't real. But yes my entire problem is either one or the other, as I do have food allergies and gut problems first stop is the immunologist but I can't rule out going to see an infectious disease specialist next. Now that I've finally got in the specialist loop I'm at least getting somewhere, it is also possible I'm just highly reactive to food allergies and THEN got a mystery parasite in Mexico and am in double trouble, who knows but I don't even have helicobacter so you wouldn't think I have much parasite load... there's also the theory that I don't have ENOUGH parasites. Anyway I'm awake and ready to leave. It's a 5 hour drive each way to see him.

0

Share this post


Link to post
Share on other sites

Ok I'm back!. I don't think the guy really knew what to make of me at the moment. But from the tests he's asked me to do he's thinking Celiac induced auto immune with possible parasite involvement?. I had zero reaction to any common allergen skin prick tests, although the following day and today two of the test sites became very slightly inflamed and have remained so, but it was a delayed reaction and no more than a mild mosquito bite. He did say gut food problems often don't show up. He said the antibody test to helicobacter is totally useless and I have to do the breath test. Meanwhile I continue to improve on Zyrtec ! and fairly rapidly the last few days despite going off it for a few days for the skin testing. Gees the itch I got after 3 days off it was getting unbearable. I don't know how I lived like that all my life... I guess you get used to it but I totally couldn't handle it now.

He's asked me to do the following tests and then come back. In the order he thought of them, they are.

1)Genotype for Celiac

2)IgG, IgG to Gliadin

3)Endomysial and Transglutaminase Ab antibody

4)Helicobacter breath test

5)FBE

6)ESR

7) ANA

8)Vit D

9) Faeces + ova+ cysts + C. difficile

10) Thyroid antibodies + Thyroid function

11) RAST for staph enteroctopus A+B

I guess this is some very extensive diagnostics ! hopefully it gets me closer to seeing what is going on

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

"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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Good luck with the programme, let us know how you get on

Mw

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Well I now have zero gut pain so it seems I did/do have small intestine overgrowth as the (one of) the reasons my gut hasn't been able to heal. Obviously I also have an auto immune condition as a result and that's the main problem but it'll be good if I can at least get the gut sorted and gain some weight more easily.

 

I'll probably take another similar antibiotic to metronidazole in a couple of weeks after I finish this just to make sure I'm on top of the bacteria but this stuff is working quite well. Most drugs I've taken haven't been effective at doing much and diet alone wasn't cutting it. So I rate this as pretty good stuff.

0

Share this post


Link to post
Share on other sites

What am I up to now? day 4? now have zero symptoms from the metronidazole and still no gut pain, no problems eating fruit. Even super ripe figs!. Eosinophilia is still obviously high but I feel really powerful in my muscles and light on my feet. Best I've felt in a long long time. Now I'm not sure what to do... will I take probiotics as I come off this stuff or will I not and if I do what cultures should I take to repopulate my gut or will I let it repopulate naturally... I know from my past experience that some cultures moderate my immune system in a good way but I suspect others send it in the wrong direction. Big decisions because I don't want to get another bacterial overgrowth. I'm thinking the smartest thing to do is probably green juice for a while and some sauerkraut. 

0

Share this post


Link to post
Share on other sites

Hey guys, hope you are all battling on well. I'm doing ok, improving overall. I seem to be effectively cured from bacterial overgrowth / imbalance after the metronidazole. I have no upper gut pain any more and my tongue is looking quite good rather than totally white and crusty. What I did was take the metronidazole and then took only natural probiotics I could trust which were mostly from home made sauerkraut. I was starting to think the strong soil based probiotics I took earlier on had gone out of control so I went more gently this time. My tongue is by far the best it's looked since I started paying attention to it a year ago.

 

I was still having a slight problem with high sugar fruits last week but each day is better and now I would say I'm totally good with fruit as of today. My stools are no longer "sticky" which I will take as a good thing and I can't even remember the last time they weren't. I've started to feel high fat meals change the way I feel and I can feel the "heat" in honey all the way down when I eat that (just been trying it the last week). So something has changed, got now clue what but something.... 

 

I had some new blood tests yesterday, I'm not sure if this Kimura's disease with resolve with my improving gut or not but I guess time will tell. I'm still on Zyrtec every day to try and get my IgE level down.

0

Share this post


Link to post
Share on other sites

Little quick update, had an IgE result the other day at 2800. So it's gone 4100, 1900, 2800. The 1900 I think was an anomaly because I was having a bad reaction at the time and I think most of the IgE were bound to tissue rather than being in the blood. This time everything was stable so I'll take that as a measure of my real improvement.  

 

My eosinophil levels while everything is "normal" has gone from  (2012) 2.2, 2.4, 2.1 (2012) (2013) 1.8, 1.7, 1.8, 1.5 (2013). Still keeping off the steroids but am doing 10mg Zyrtec in the morning and 10mg Loratadine at night. Those are to lower the IgE levels and stop me itching and having sores on my skin. I'm following the SCD diet properly now and will just continue what I'm doing until the improvement takes me all the way or it stops in which case I'll move up to stronger drugs but for now everythings going well. Still have no gut pain so that at least seems to be healing

0

Share this post


Link to post
Share on other sites

Hello! yet another quick update. I'm still slowly improving. Still doing 10mg Zyrtec and 10mg Loratadine (zzzzzzzzzz very sleepy though). I'm going to replace one of them with suplatast tosilate (IPD-1151T) as soon as I can source some of it out of Japan. That should get me to the next level of safe immune suppression. My gut is really good these days and gaining a little weight, got another set of blood tests next week, so hoping for further black and white on paper improvements 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,546
  • Topics

  • Posts

    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined