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foam last won the day on September 10 2015

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  1. I think I will assume she is correct but also get the biopsy done. I am looking at the handout she gave me (she has this site listed on the handout as the place to go to for answers) and there are all these questionable ingredients that she has listed.  It says to check with the manufacturer before eating (assume there is gluten until verify otherwise): brown rice syrup, caramel color, dextrin, cereal products, malt or malt flavoring, malt vinegar, modified food starch, and soy sauce.  OMG is there no end to the places they will stick gluten?

    Okay, so I am going to move on to stage two of living with Celiac Disease - researching hidden gluten.  Sigh... 

    Thank you all for the advice and support, the links and the wisdom.   I am going to try not to lose sight of the fact that I feel way better than when I started this process last winter.  I even look better being rash free.   I feel less anxious today than I did initially.  Information helps. You have all helped. Thank you.

    Just a note about the antifungals. I did diflucan and nystatin for many months at one stage. They arent very effective on candida and diflucan is a harsh drug, imho youll achive more on your diet but itll take a long time. Fungi can lay dormant for... Years no problem, its no instant thing. Try the antifungals but keep a watch on side effects and blood tests if you are doing them long term. Best way to change the fungal load is change the enviroment they live in. More acid and less sugar is good. Acid as in when your pee and poo is a little acidic all the time, itll go dormant but will take a very long time to go away. The diet shes suggesting will do that, just go with what she suggests. She sounds a good dr, not sure why you would do a biopsy when its captain obvious. Dq2 AND dq8 both together is very prone to all kinds of problems.  Modified starch is a problem wheat based or not, 1422 gives my son hives and has given my father siesures that he takes weeks to recover from and neither of them have problems with anything else. I stopped eating gluten years before I had any testing done simply because my mind would go weird within 5 minutes of eating bread and id have wild diarrhea 20 minutes later for.. 5 years i lived like that. Fixed the day i stopped eating gluten, the bleeding sores on my back ive had for 20 years have finally almost stopped now, 7 years post gluten.


  2. Catch up growth is a real thing but its something that happens strongly early on with kids that got low quaility/not enough breast milk or not enough sleep in the first 6 months. My son was below the 5th percentile from 2 months to 6 months but had huge growth once he started solids. At age 2 hes above average and continues to grow at a 100th percentile rate. Having said that he would have been bigger with a good start and weve been pretty excessive with his nutrition ever since. He ate at least one avocado aday from age 6 months to a year and eats eggs every mornig, he drinks  1 litre of goats milk now everyday. He wears size three tops at the moment, hes never eaten anything with dubious nutrition (grain free). So you can increase rate of growth(both parents are under average btw). But youll get less growth from an older child just because they are growing slower at that age. Still you have 17 years left to push his height so dont waste any meal.


  3. Your doctor is right. If you have both dq2 and dq8 you should not risk eating gluten. Also people with celiac disease are easy to pick for anyone with some experience. The hla genes are inherented from ancient humans, it gives you immune system advantages but isnt really compatable with modern processed life. It runs deeper than just gluten imho.


  4. We are going to come down pretty harshly on this because the long term undiagnosed are living with unfixable problems. Keep eating gluten and you may as well roll a dice on your next autoimmune disease. Get unlucky there and you can end up with organ failure. Youll be at a very high risk of cancer, brain disease etc. Its like dead serious buisness, for you gluten is poison and thats the respect it needs.


  5. You have auto immune disease , positive bloods. You have celiac disease. Genius idea to do nothing, wait for the damage to be permanent, wait till you get t cell cancer, hodgkins. Great idea:). STOP EATING THAT SHIT TODAY, thats what any sane doctor would tell you. Ps have the gene test, if you have that and eat enough bread you will get celiac disease... Eventually 


  6. Hey thats great you kept it up. Ive had one break because I got very acid and some muscle wastage but now im doing better, i take whey powder for extra protien now. My kidney function more than doubled and my inflamation got less after 3 weeks in ketosis and held there since. The strange thing is  I can now tell when im going into ketosis with 100% accuracy. I can have a negative pee strip then an hour later my heart rate will increase and ill know the next strip will be maximum ketones. Im eating less meat this time. More green juice and more total protien. Mostly i notice my skin better. It seems a fail proof cure for acne.


  7. I actually never had the antibody test, I just quit gluten on the advise of my doctor who suggested I was probably celiac due to my daily abdominal pains etc. They went away within a couple of days of stopping gluten for the first time in my life, I was"sick in the guts" as a kid, adult, always... Later on I had the gene test and was positive on that, I always had the classic dermatitis all over my back too. The later doctors didn't want me to do a gluten trial because they were convinced enough I was celiac originally because I had developed further immune disease and didn't want to cause any further harm to me via the trial. The also said the antibody test isn't very good anyway, they are more about the genetics. You can have antibodys against gluten and still be "negative" anyway, you have to be a certain level of sick to test positive even though your body actually has a low grade of autoimmunity as a negative.. go figure... I say if you have an anti body against gluten and you keep eating it youre stuffed.. sooner or later.

     

    PS, you don't get TWO kids celiac unless they got the gene from somewhere and I highly doubt both kids inherited a single gene from their father and got symptoms so early in life, the odds of that happening are not likely. It sounds to me like the kids have a double pair of genes and that's impossible unless both parents are carriers. 

     

    I used to wake up in the middle of the night in so much pain I didn't even know my own name, or where I was.. or that I was even alive or a human.. all I knew was to get to the toilet.. lol some half and hour later my mind would start to function again, that god I don't have to go through that anymore. It wasn't a lot of fun.


  8. My son just turned two. Hes not on a ketogenic diet by any means but other than very rarely eating rice hes never eaten grains. My family as a whole has far to much trouble with grains to risk his health on a food with next to zero nutritional  value besides its inflammatory effects. Hes grown far more than his peers since they started solids, granted he was undr the 5th percentile at 6 months so had some catchup to do, but hes above average on all markers now. I have a 3 month old daughter now and given what fruits and juice did to my sons digestion early on and the fact breast fed babies are in ketosis already she wont be getting many carbs for her first months ofsolids. Nvsmom, dont splurge, you cant mix carbs in, its either summer or winter.


  9. Your body will use LOTS of water to process the fats, so you have to drink plenty of water, keep drinking enough to keep your pee clear. Keep the cocconut oil intact up, help a lot if you find a yumny tasting brand, most dont taste good. Youll probaby have legs you  cant stop jiggling around after a very high fat meal for a week or two. Maybe a faster heart rate. Those things take 2 or three weeks to calm down one the body adapts fully.Yeah it only takes 3 days for ketosis . Just shows you its a very natual state to be in.


  10. nvsmom, I haven't had the tests yet. I've been reading up a lot on the diet and people that are on it. You had to take into account most people are doing this diet simply for weight loss not for disease control/cure. Also a lot of people are not doing it very well, many just eat bacon and butter... They lose weight and they are happy. You read the occasional doctor saying you can't do it long term or it damages your kidneys, causes accelerated aging etc.. But then you read research papers where it cures damaged kidneys in mice and the odd personal account where it's done the same to an actual human. There's definitely people out there with incurable brain cancer who have cured themselves on the Ketogenic diet and also people with MS, Parkinsons and Chrons disease etc who have cured on it. There's actual scientific research being done on the diet all the time because it does work against those things but even the scientist don't really know anything about it or why it works. Anyway yes it worries me the diet may damage the kidneys further although there's never been any actual paper or proof that it actually does and of course when you have a disease that causes kidney failure in itself.. you really prefer to get rid of the disease than worry about any minor effect the diet may have. I've found people that have been on the diet for up to 15 years and they are in excellent health. Ridiculous good health actually.

     

    On the test strips I have I'm almost all the way in Ketone production all the time, probably too much but that's just where my body seems to run and I feel fine so.. I haven't yet at any stage seen any reading on the sugar strip, it just reads zero sugar all the time, every day so far in the last month. I'm still eating dairy but I only eat goats milk, goats cheese or buffalo milk, cheese and yoghurt. I haven't touched cow milk in years, that stuff can be not good at all.

     

    Body weight and sugar levels just go away on this diet, nothing you can do about it. It's just one of the effects. Unless you are drinking fat all the time 24 hours a day you can't gain weight on it, soon as you sleep or don't eat for a minute your body will continue stripping fat off your body to fuel the brain and body. Another side effect is you don't get hungry much at all, because your body is constantly fuelling itself from body fat you don't go OMG I'm hungry as soon as your carb stores drop, just doesn't work like that anymore. I've managed to not drop much weight but my body fat is getting less and less all the time. I don't know if I'm gaining muscle but it seems like I must be because the weight has to be somewhere.

     

    p.s I've had like most long term damaged celiacs bad digestion for years and years. I used to be on the toilet quite a few times a day, these days since being in Ketosis I have well formed perfect or near perfect stools once a day only. Quite happy about that.


  11. Thanks guys, yes it works very well indeed. I was so confidant after two weeks on the diet I walked into my doctors office and proclaimed I was cured lol. He sat me down and was like o  K.. but your kidney results are not good (a test I took about a week before starting the diet, I actually started the diet because the nurse drawing my blood had been making comments lately that something not right was happening to my veins the last two times I'd been in). Any the doctor figured the bad results were because of the drugs and they were likely constricting my veins including the ones in my kidneys so I had to get off all the drugs as of right then.. That dampened my mood but I was like well... I'm cured while I'm on the diet anyway so I don't need them anymore. I probably should have the follow up tests but I'm still improving all the time and I'm hiding on the potential kidney biopsy.. I feel fine anyway so it doesn't matter so much. Maybe next week :).

     

    I could actually see my veins had been shrinking over the last few months, but they have come back to a decent size now after a month off the drugs, but my tumour was pretty big at one stage, about the size of a can of soft drink in my neck. Right now as I type this it's about 3cm x .5cm. Not much more than a normal enlarged node, certainly the smallest it's ever been since I first noticed it 9 years ago. A month ago just before I started the diet and before I got off the drugs it was about 7cm x3cm. Small compared to it's record but still much bigger than now. This is how it was on this day (December 2, 2013) https://www.youtube.com/watch?v=ezq3V1YSLgA.  Really no adult has ever permanently beaten this disease before so it's quite a big fight to be in.


  12. I'm just basically soaking everything I eat in oils. Mostly coconut Ghee and macadamia oil but also some animal fats. I'm eating a lot of eggs and meats but trying to get in leafy greens also and other low carb things like broccoli and cauliflower all served with oil/butter sauce of course. Nothing else has ever been able to suppress my immune system from misbehaving not even transplant drugs. 

     

    I had already given up gluten about 6 years ago and grains 3 years ago so I've had plenty of time to heal but because of the secondary immune disease I haven't ever recovered my health or digestion etc. The Ketogenic diet seems to cause enough gene switching to help immune system problems, I guess it has a similar effect as you see when women often recover from immune problems while pregnant as gene expression changes a lot then too. Only problem is they get sick again after the birth, I guess if I eat carbs again my disease will come back.. but that's a test for later.

     

    I've also read grain brain, he's very pro Ketogenic, there's some good lectures on youtube about it too.

     

    Because my immune disease gives disfiguring tumours to the neck and face I need something I can stay on longer than the drugs to keep it suppressed, so far this diet works better than even the really strong steriods and transplant drugs. At the moment I have no noticeable tumour, well only I can notice, not the general public. That makes me happy.


  13. Just asking because I started this diet 4 weeks ago (fully scientific research version with near zero carbs and getting 80% of my calories from fats) and it fixed all my digestion issues within 2 weeks, I now have perfect stools everytime, once a day instead of 6 times :P. It's almost completely cured (or very heavily supressed) my immune system disease also. I've been struggling at this game for a long long time and this is like the heavy freakin guns. It's just smashing everything back into new condition. Even my hip I injured a few years ago stopped hurting within the first 2 weeks and the mobility in the hip has gone from 30% of my good one to 80% of my good one.I'm just so impressed, I gave up grains years ago, grain oils, this that and everything but I've never given up carbs and it seems like that was the major problem all along.. Well worth trying out!. I don't know how long I can sustain the diet because I'm losing body fat slowly but surely, I'm guessing I'll be completely leaned out and run out of body fat in about 6 months. That'll be summer time here I I'm thinking that'll be about the right time to eat a few carbs and see what happens.


  14.  

     

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

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

     

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

     

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

     

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

     

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

     

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


  15. HI.  This is my first post here.  I am sure you all know way more than my doc about celiac.  I was diagnosed in July and also had several severe vitamin deficiencies.  

     

    My hands and feet are sometimes numb and tingly, finger tips feel like they are burning.  My joints hurt.  Doc says this is because my vitamins are low and I need to supplement.  I take my vitamins sporadically because I get wicked nauseous after ingesting them.  But this week I have been consistent since the burning in my fingers has been so intense.  Three days into being a good little pill popper my gut stops digesting.  I am plagued by epigastric pain and put myself on a clear liquid diet as the only way to deal with the stabbing pain and intense bloating.  I am taking the vitamins in the morning still with a half cup of sticky white rice to help settle the nausea.  

     

    I am positive the vitamins are gluten free and I have not been contaminated as far as I can tell. 

     

    The burning in my fingers is gone and my joint pain is much better but my stomach is not at all happy.

     

    My question is, What would you do?  Should I stick it out with clear liquids, rice and vitamins and see if my gut heals?  Or should I ditch the vitamins?  Are there certain vitamins that are easier to digest?  I am taking centrum women's, B-100, and D-3.  

     

    You need a b12 shot or 3. Typical normal thing for a celiac. Your symptoms are classic b12 deficiency. You'll feel amazing 5 hours after the first shot.


  16. In the US, you don't find this very often.  It is considered to be highly processed and tests gluten free.

     

    Personally - if I see the word " wheat" on a product, I just skip it.  Its safe, but I have seen that dirty word....   Psychosomatic probably.   :blink:    But, like I said, I haven't seen glucose made from wheat more than once or twice in the US.

     

    Outside the US and heavily US influenced countries ALL glucose is made from wheat.

     

    It's not the greatest stuff in the world, being a refined sugar but I'd take it 1000x before I took the same thing made from Corn. It's very common stuff and yes it has no gluten. But it's made from a grain and it's sugar, I wouldn't eat it if you wanted to remain healthy long term.


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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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

     

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