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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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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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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



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 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.

    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

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    • It sure does seem like he is getting gluten into his diet. http://www.cureceliacdisease.org/faq/in-follow-up-blood-testing-why-would-ttg-be-negative-and-dgp-be-positive/ How does he feel?  Was he symptomatic when he was first diagnosed?  Cross contamination can be a huge problem.  Best to avoid eating out until those elevations are reduced.  I never had a positive on the TTG tests only the DGP.  I struggled last year after taking a hit (unknown source).  I buckled down and did not eat out (even at a 100% gluten free restaurant) for a year.  My house is 100% gluten free as we have two people who need to be gluten free.   Just recently a new study has shown that too many celiacs are getting gluten exposures: https://www.npr.org/sections/thesalt/2018/04/03/598990638/when-going-gluten-free-is-not-enough-new-tests-detect-hidden-exposure I would try to stick to non-processed foods as much as possible.  I wish you both well.  
    • I had allergy testing for the grain allergies through a company called Cyrex Labs.  I had their Array 3 and 4 tests.  That test was ordered by my DR.  The other allergies/ intolerances were discovered through personal reactions that I had experienced after consuming the products and confirmed using muscle response testing and Nambudioad Allegy Elimination Technique (NAET).  I Was having many of the same symptoms you described.  I know NAET is controversial and it doesn’t work for everyone and I don’t know if it can eliminate Celiac disease but it definitely eliminated my allergies!      There are also standard tests called RAST, and Eliza.  Cyrex Labs has many different tests.  here is a link to their available tests. https://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx  
    • Diagnosed Celiac 2011 by blood test and scope, been gluten-free since. Been in severe pain, nausea, passing a great deal of blood.  So need to prep for colonoscopy and got Rx for TriLyte with flavor packs (lemon-lime & cherry). Gastro Doc said it was "probably" gluten free.  Really? Probably?  Asked his Physician Asst. to make sure before I leave so he could Rx something else if need be.  She comes back after a long wait, "I think it should be; check with the pharmacist when you pick it up, they'll know". They don't know with any certainty either, though they did try calling & looking online. I've tried online myself & left multiple messages at the Inquires pH. #  at Wallace Pharm, nothing. Has anyone here used this product safely?  I'm delaying the test until I get a straight answer or another prep that's definitely gluten-free. Has anyone else here safely used this product? Or recommend another you KNOW is gluten-free safe? Or know where I can get a definite yes or no answer? 
    • Thanks for your response. My son is 9 and has an extremely limited diet due to texture issues, etc. I know that he is not eating foods due to peer pressure and takes the gluten-free diet very seriously so the problem must be cross contamination at restaurants as well as processed gluten-free foods that aren’t truly gluten-free. Ugh. Another troubling thing is that his GI doc (recently retired) never did this full range of tests so we thought my son was doing great! I guess we are back to square one. Moving to a whole foods diet for him will be extremely difficult but must be done.  
    • For several years, I've been getting a recurring rash on my upper torso. It always extends from the front of my shoulders down my chest, then becomes more sparse toward my stomach, eventually turning into in solid red ring on and around my belly button. The pattern is always almost exactly parallel on both sides of my chest. Has anyone else here experienced this? I know this sort of thing is common with celiac disease, but I've read very little about it being in such a specific pattern. It always coincides with an autoimmune flare-up. I'd go to a doctor, but every time I've asked doctors about the rash, they just write it off as "skin irritation" and sidestep my questions. After four or five doctors did that, I stopped trying to get a diagnosis. I'm not self diagnosing; I tested positive for celiac via a blood test four years ago but doctors won't listen to me after a gastroenterologist's later celiac test came up negative. He only had me eat gluten for two days before giving the test, and he'd also never heard of celiac causing tooth enamel defects, so I'm assuming that he's just ill-informed about the disease. Thanks!
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