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      Frequently Asked Questions About Celiac Disease   09/30/2015

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foam

Ketogenic Diet Anyone Tried It ?

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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.

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Hello! I've been following this forum for awhile but this is my first time participating. My daughters were both diagnosed with celiac in April and my endoscopy is scheduled for tomorrow. I had to create an account bc my husband and I have been on a ketogenic diet since the end of January. It has been a wonderful experience for us! We started it for weight loss but it has improved many aspects of our life, sleep, moods, etc. I had to add a small serving of gluten back into my diet for celiac testing twelve weeks ago. I haven't seen any improvement in my symptoms while doing keto but I suspect if I have celiac that I have had it for 20 to 30 years undiagnosed. So, a few months ketogenic probably isn't enough for complete healing. Besides, it's only been since April that we started removing all those hidden sources of gluten. I had no idea it was added to things like soy sauce, supplements, spices, etc. Anyway, I guess I just wanted to encourage you in your new found diet bc I think you're on the right track!

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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.

 

I tend to dabble with low carbs but then break it with something starchy or sugary before I truly get into ketogenesis.  I am trying to get into ketogenesis in the next few weeks.  I am a recovered celiac but I have other issues (arthritis, fatigue and migraines) that make me suspect other AI diseases could be affecting me.  I'm hoping it would help.

 

Plus I have a wicked sweet tooth so if I have any carbs, I just crave it for the day and feel hungrier.  This morning I added some bok choy to a lot of bacon fat and my egg, along with a bunch of cream in my coffee, for breakfast.  I finished eating an hour ago and I am hungry again.  Yesterday I had a bunch of coconut cream in coffee and bacon for breakfast and I forgot to eat until 6;00 because I was still satiated. :rolleyes:   Darn tasty carbs...

 

I need to lose about 30lbs too.  Weight loss would be a nice plus.

 

Hello! I've been following this forum for awhile but this is my first time participating. My daughters were both diagnosed with celiac in April and my endoscopy is scheduled for tomorrow. I had to create an account bc my husband and I have been on a ketogenic diet since the end of January. It has been a wonderful experience for us! We started it for weight loss but it has improved many aspects of our life, sleep, moods, etc. I had to add a small serving of gluten back into my diet for celiac testing twelve weeks ago. I haven't seen any improvement in my symptoms while doing keto but I suspect if I have celiac that I have had it for 20 to 30 years undiagnosed. So, a few months ketogenic probably isn't enough for complete healing. Besides, it's only been since April that we started removing all those hidden sources of gluten. I had no idea it was added to things like soy sauce, supplements, spices, etc. Anyway, I guess I just wanted to encourage you in your new found diet bc I think you're on the right track!

 

Welcome to the board.  :)  Good luck with your endoscopy.  Have you had positive blood tests already?

 

It's great to hear about your keto success. Very motivating.  :)

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Do you have any good keto resources or links?  I'm always looking for more info and motivation.

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nvsmom, thank you! I had the IGA blood work done but my serum IGA was too low for an accurate reading so my Dr ordered a full celiac panel last Thursday.

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A great website is ruled.me. He has a lot of info and recipes. Mostly I've relied on books. I read "keto clarity" to start, "Wheat belly: total health", and "the big fat surprise". Right now I'm reading "grain brain". They are all excellent! My husband is down 50lbs and I've lost 37lbs, not to mention how much better we feel! If you can stick to keto perfectly without cheating for a week or two your cravings will disappear and so still you're appetite! Good luck!

Edited by Adasmama

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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.

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nvsmom, thank you! I had the IGA blood work done but my serum IGA was too low for an accurate reading so my Dr ordered a full celiac panel last Thursday.

 

 

Oh good.  It included the DGP IgG and tTG IgG?  Those are usually the best for detecting celiac disease in those with low IgA, although the tTG IgG can miss quite a few celiacs.  

 

A great website is ruled.me. He has a lot of info and recipes. Mostly I've relied on books. I read "keto clarity" to start, "Wheat belly: total health", and "the big fat surprise". Right now I'm reading "grain brain". They are all excellent! My husband is down 50lbs and I've lost 37lbs, not to mention how much better we feel! If you can stick to keto perfectly without cheating for a week or two your cravings will disappear and so still you're appetite! Good luck!

 

Thanks.  I put Keto Clarity and Big Fat Surprise on hold at my library.  :)

 

Aww, that first week or two... That's my problem time for sure.  LOL By early July, eh?  I can do that.  

 

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.

 

I just had renewed interest in the keto diet after reading The Wahls Protocol. Terry Wahls is an md who developed ms.  She tried the more traditional route and it didn't work for her so she researched dietary changes and came up with the Wahl's protocol.  She basically turned her ms around so she was out of the wheelchair and bike riding again. For those with autoimmune problems the diet is a mild ketogenic diet but there is no dairy or eggs.  I know dairy is a problem for many with AI problems so I let that go too, but I kept eggs.

 

Anyway, your diet sounds very similar to hers.  Grains, starches and sugars just don't seem to mix well with AI diseases.  I'm glad you found something that is working well for you!  :)

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Foam, you're diet sounds like a perfectly healthy ketogenic diet! It's great to hear the improvement in you're health bc of it. I do think the symptoms will come back if you try to add carbs back in.

Nvsmom, my celiac panel included all four markers but I haven't gotten the results yet. My endoscopy is scheduled for later today, so I will hopefully have answers soon. I'm so glad that you are going to read those books, especially the big fat surprise. It has changed the lives of my family in so many positive ways.

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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.

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I suppose I am on a version of the keto diet. I do consume dairy in the form of butter, cheese, cream and yogurt. I went low carb, high fat to control my blood sugar. I basically "eat to my meter" and carbs will raise my blood sugar. The carbs I do consume can be found in yogurt and veggies "grown above ground".. I do not limit my veggies at all and coat them with butter, bacon fat, or olive oil. I add coconut oil to my coffee. I do use Soymilk in my coffee, but that is because I have been consuming it for most of my life when I could not tolerate/allergic to casein. I can say that my allergies have greatly diminished since being gluten-free (2 yrs) and LCHF (1-1/2 yrs). I consume meat, fish and poultry.

I can not say for sure, but my turning point for feeling good occurred 1 year after my gluten-free diet and the introduction of LCHF. I suppose lowing my blood sugar has helped tremendously. My doctor, although not a fan of LCHF, is happy with my blood sugar and health markers (e.g. Cholesterol levels). I charted my progress (blood sugar meter results) and presented them to him. He told me to maintain the diet. I now test as a non-diabetic and I do not take any diabetic medications. We are assuming that I am a lean type 2 and any dramatic blood sugar changes will prompt my doctor to test for LADA (type 1). It is a strategy that is working.

I hope, Foam, that your keto approach continues to help you! Keep us posted.

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Nvsmom, my celiac panel included all four markers but I haven't gotten the results yet. My endoscopy is scheduled for later today, so I will hopefully have answers soon. 

 

Good luck with the endoscopy.  Let me know how the testing goes.  It's always helpful to others to see how people's test results are.

 

 

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.

 

:o WOW!  That is just amazing.  Good on you for figuring that out on your own.  Impressive.

Have they rechecked your kidneys since going on the keto diet?  Perhaps it has changed and there is no longer a need for a biopsy? I understand hiding, I've done that on a few tests myself.  :ph34r:

 

I suppose I am on a version of the keto diet. I do consume dairy in the form of butter, cheese, cream and yogurt. I went low carb, high fat to control my blood sugar. I basically "eat to my meter" and carbs will raise my blood sugar. The carbs I do consume can be found in yogurt and veggies "grown above ground".. I do not limit my veggies at all and coat them with butter, bacon fat, or olive oil. I add coconut oil to my coffee. I do use Soymilk in my coffee, but that is because I have been consuming it for most of my life when I could not tolerate/allergic to casein. I can say that my allergies have greatly diminished since being gluten-free (2 yrs) and LCHF (1-1/2 yrs). I consume meat, fish and poultry.

I can not say for sure, but my turning point for feeling good occurred 1 year after my gluten-free diet and the introduction of LCHF. I suppose lowing my blood sugar has helped tremendously. My doctor, although not a fan of LCHF, is happy with my blood sugar and health markers (e.g. Cholesterol levels). I charted my progress (blood sugar meter results) and presented them to him. He told me to maintain the diet. I now test as a non-diabetic and I do not take any diabetic medications. We are assuming that I am a lean type 2 and any dramatic blood sugar changes will prompt my doctor to test for LADA (type 1). It is a strategy that is working.

 

It seems funny that your doctor is against it but it is improving your health.  :huh:   Awesome job though... I need to get to that point too.  My blood sugars bad but they are definitely on the "unhappy" end of normal.

 

I think most keto diets include dairy.  The Wahls protocol excluded it because of the effect dairy can have on autoimmune issues.  Sort of like how gluten makes some AI diseases worse even when there is no celiac disease involved.

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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.

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That is quite a success story!  There is no disputing that you have found something that works amazingly well for you.  I'm hoping it will work for me too.

 

I've heard some doctors worry about kidney function while in ketosis but it sounds like that is just a worry for people with kidney problems.  I discounted that worry along with doctor advice that the gluten-free diet is difficult and unhealthy.  Eating whole foods is not a bad thing.

 

I've been eating what I think is a keto diet for a few days (again).  I tend to get about 5 days in and then cave in once I'm worn down from being tired cranky and head achy.  Sugar is definitely a problem for me because every time I cut it from my diet I experience a lot of physical symptoms.  The multi day migraines and fatigue wear me down some, but if I can stand it for a week or so, I should be through it.  By next weekend I should be okay.  

 

Thanks!  This is motivating.

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Nvsmon,   I felt quite bad for a week or so but then I felt good. You can get the pee test strips to see when you get in ketosis from any pharmacy.

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I actually went and bought some this morning.  Thanks.  I'm quite curious if I am close to ketosis.  I have a glucose monitor and it is sitting at about four and a half after a LCHF meal so My blood is happy anyways.

 

Thanks!

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If you can tolerate dairy and coffee, homemade bulletproof coffee is delicious and it's what really pushed me into deep ketosis! I'm sipping I. one right now. This will keep me full until 1 or 2 in the afternoon! Here's my recipe:

1 tbsp coconut oil

1 tbsp kerrygold butter

1 tbsp heavy whipping cream

1 cup coffee

Liquid stevia to taste

Blend it all up in a blender and enjoy! I pour mine into a to go mug to keep it warm longer.

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If you can tolerate dairy and coffee, homemade bulletproof coffee is delicious and it's what really pushed me into deep ketosis! I'm sipping I. one right now. This will keep me full until 1 or 2 in the afternoon! Here's my recipe:

1 tbsp coconut oil

1 tbsp kerrygold butter

1 tbsp heavy whipping cream

1 cup coffee

Liquid stevia to taste

Blend it all up in a blender and enjoy! I pour mine into a to go mug to keep it warm longer.

 

I do something similar, I add a bunch full fat coconut cream.  Before trying to get into ketosis I added just a tablespoon of it.  Now I add quarter of a can and consider it as part of breakfast, along with bacon and/or eggs and some fried greens (with a bunch of fat.  Yum.

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Not doing this diet but am following the thread out of interest. These coffees sound so good!

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I checked my ketostix last night and it said I was in moderate ketosis already.  Huh. :huh:  That surprised me.  I thought it would take longer . I guess I am eating low enough carbs, or my calories are low enough that I am in a mild starvation/fasting mode.  I doubt that's it though since I am eating a fair bit, albeit less than normal.

 

This is a typical day for me:

Breakfast: 2c bok choy and 1/2c mushrooms or egg fried in bacon dripping, 2 slices bacon, coffeee with ~1/4c coconut cream and a couple drops stevia

late morning snack: coffee w/ 1/4c coconut cream and stevia

late lunch: smoothie with 2c spinach, 1/2 avocado, a kiwi, 1/4c coconut cream, stevia

dinner: steak and brocoli with butter and nutrional yeast

snack: 1/4 c macadamis nuts

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I think it usually takes about three days to get into ketosis. I'm going to check my level Monday since I'm finally ofg gluten after my endoscopy. The only thing that might keep you out of deep ketosis is the kiwi you mentioned. Fruit should be avoided to start and then only low sugar fruits like berries are recommended in moderation. Great job though!

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Thank you, Adasmama.  :)

 

I checked it this morning, just out of curiosity, to see if it was a fluke and it was not. I am in deep ketosis - somewhere between the darkest purple and the next darkest purple.  I was pretty surprised.

 

Blood glucose was 4.4.

 

Headache is gone.  I'm a bit tired but I think I'm fighting off a summer cold that my youngest just got over.

 

I have a question.  It may be TMI but with the stuff we talk about around here, I'll ask anyways.  LOL

I think I know but I'll still ask.  Is it normal for urine to be much more concentrated when in ketosis?  I'm not 100% sure that I'm in ketosis because it is around 30C around here, which is close to 90F, and we do not have air conditioning... most people around here don't since it only gets that hot for about 1 week of the year.  LOL  Anyway. I think am drinking lots but I wonder if I am dehydrated or it is the ketones.  For the colour and odor of my urine, in the past I would have assumed I was dehydrated.

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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.

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Thanks.  I am noticing I am thirstier but I wasn't sure if it was just because it is so hot. My body isn't used to 30C yet - I almost think I can handle -30C better.  LOL

 

I will make more of an effort to drink more.  I will drink 1-2 glasses (cups) of water every hour that I am awake.

 

I haven't noticed the jiggling legs but I am a bit more scattered.  My focus is a bit off but my energy is coming up - sitting on the couch in the evening is less appealing but I am falling asleep quickly.  I'm not sleeping quite as deeply the last few days and my joints are waking me up when I can usually sleep through pain. That could all be coincidental too.  I think I'm getting my son's cold or some sort of allergy (I normally do not get allergies).

 

Thanks again for helping me.... I sort of high jacked your thread.  ;)  It seems like a good way to live though. I wonder why more doctors do not suggest it?  I bet those with FODMAPS and some with NCGS would benefit too.  I wonder if a healing celiac would do better with ketosis?  We already know whole foods are best for healing...

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I'm slowly shifting my daughters to a more ketogenic diet. They are 2 and 3 1/2 years old and were both diagnosed in April. They are doing great gluten-free, but my youngest has had diarrhea for the last three weeks. I'm beginning to think she was glutened bc her diarrhea has been getting better the last two days. But, over the last few weeks I've been over analyzing everything I feed her, worried she was developing other food intolerances or that I was glutening her inadvertently. I do agree that a ketogenic diet is healthy for everyone. Grains are inflammatory and getting them out should speed celiac healing. My biggest problem is trying to figure out what to feed these kids!!

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