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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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foam

An Interesting Story And Introduction

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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.

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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

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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!

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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.

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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

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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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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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"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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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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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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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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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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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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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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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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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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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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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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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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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.

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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. 

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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.

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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

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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 

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    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
    Read more at princegeorgecitizen.com

    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
    In their study, a team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
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    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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