Ketogenic Diet Anyone Tried It ?

[cyclinglady]

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!!

Adasmama,

 

I am on a LCHF diet which  is comparable to a Ketogenic diet.  I have been on this diet for over a year and a half and am doing it because it manages my blood sugar levels well (am a diabetic).   Managing my blood sugar and remaining gluten free is my best bet for good health (not to mention avoiding amputation, blindness and kidney failure).  My doctor supports my diet even though it does not follow current ADA recommendations (though that is slowly changing) and he/she monitors me on a regular basis.   I eat all kinds of weird veggies and I insure than I am not deficient in any nutrients.  I eat a well-balanced diet, unlike other LCHF dieters who tend to consume too much protein, the wrong fats, not enough vegetables,  etc.  

 

The Ketogentic diet was designed for those with epilepsy.  There is no reason to restrict carbs from your children's diet as newly diagnosed celiacs.   There is no research that a ketogenic diet is going to speed the healing of a celiac.   Right now, it is just a theory (way out there too).  I think this diet is fine for adults wishing to experiment with weight loss or improved health, but I would caution you against putting your children on it.    It  is a good idea to give them whole natural foods that includes carbs like:  sweet potatoes, white potatoes, squash, legumes, fruit.  I personally support reducing added sugars, juices and junk food.  

 

There are lots of theories out there regarding different diets but not many have been researched.  Experimenting on children can be dangerous.  What is known for sure is that a gluten free diet is the current "cure" for celiac disease.  No one has had adverse reactions from being gluten free.  There have been fatal side effects from the ketogenic diet.  However, if  my child had severe epilepsy, I would seriously give it a try.  

 

Your daughter could be getting glutened.  The learning curve for going gluten free is steep.  She could also have picked up a virus, parasite or bacterial infection (been swimming lately?).  

 

I wish you all well.  

[Adasmama]

Cyclinglady, I wouldn't ever put my little girls on the type of ketogenic diet my husband and I are on, I agree with you on that. I think my comment was maybe misleading. But I am trying to cut back on processed foods, grains, sugar and excessive fruit ( they don't drink juice except on rare special occasions) in their diet. Which isn't always easy bc they're toddlers so they're picky eaters! I'm aiming for a whole foods/ paleo type of diet for them but we're a long way from that I think!

[cyclinglady]

Whew! It is so hard to "read" between the lines! I confess I was a little worried, plus, I did not want to offend you.

Glad to hear that you are feeding them well. They will get used to good food. Just keep presenting it to them. My 14 year old would rather eat healthy. I beg her at times to eat fast food when I am in a pinch, but she rarely agrees. I have had to pack her lunch since the first grade (after one school prepared lunch it was over)! So far, she has tested negative for celiac disease. Maybe all that good eating has helped!

[Adasmama]

No worries! I guess my main thought is that I believe grains aren't good for anyone, least of all celiacs who have inflammation and damage they are trying to heal. But my daughters still eat gluten-free grains and lots of different fruits and vegetables (if I can get them to try them!) I'm just trying to decrease the grains and sugar while adding more healthy fats into their diet.

[Adasmama]

So, they are in no way on a low carb diet. Just leaning toward a whole foods type of diet. A far cry from our old way of eating (delivery pizza Monday was a thing in this house)! I do miss the convenience sometimes but with both my girls diagnosed celiac and my probable celiac, I think fast food is a thing of the past for us! I'm sure my girls will be much healthier for it.

[nvsmom]

Our house is low grain too, with the occassional treats.  The main grains in our house is brown and wild rice, which we eat about twice a week.  Their next grain source is Udi's bread; I allow them only one slice of bread at lunch otherwise they would eat half of a loaf.  I would rather they fill up on nuts or yogurt instead.  My middle son gets into the rice crackers on most days. That boys loves his "beige" foods - he is a challenge. Their morning pancakes are grain free too; just coconut flour, flax meal, chia and hemp are in them for "flour".

 

Treats are grilled cheese sandwiches, pizza, and nachos.

 

Keeping the sugar down is the harder part.  Maple syrups, ketchups, and especially yogurt (I mix in a plain, higher fat, greek yogurt in with their flavoured stuff) are harder to cut back on.  Oh, and cranberries or raisen - my kids love those.

 

I'm out of ketosis today and paying for it.  I had some potato salad and a couple of bites of sorbet last night.  We were eting out and I allowed myself to splurge - big mistake.  The migraine strated last night and it seems to be settling in for the day.    I have had a lot of multi day migraines over the last couple of weeks while I was going in and out of LCHF. I thought it was just withdrawal but now I wonder if it is just the effect that sugar has on me? 

 

I had bacon, coffee with coconut cream for breakfast, and I'll eat an avacado for lunch.  Hopefully some high fat meals will help clear up this headache faster.  

 

Blood glucose was 5.6 this morning.  I expected that or higher.

 

Yesterday, when I was still in mild ketosis, my morning BG was 5.1.  That reading surprised me a bit because it had been 4's for a few days.  The day before was a pretty low carb day with about 25g of carbs.  I guess my body is still getting used to this and it will take a while to even out. I was getting into prediabetic readings this past year so my body has a lot to sort out still.

[foam]

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.

[nvsmom]

Nvsmom, dont splurge, you cant mix carbs in, its either summer or winter.

 

So true....A snarky, small part of me wants to argue that up here(Alberta) , it's not either winter or summer.  We've had snow in July and wore shorts at the '88 Olympics in Februrary.  LOL   But I know what you are saying.  I'm either in ketosis or not.  Thanks.  

[nvsmom]

I'm back in mild ketosis. BG this am is 4.6. My appetite is falling again.

 

That cheat made this headache last longer. 

 

I'm also in an AI attack (I have other AI diseases).  It started about a week ago when I first started eating keto.  I have the tell tale sore sinuses/mouth/throat that sometimes turns into mouth sores, fatigue, chills, and that headache.  I started getting the inflammatory arthritis in (just) one shoulder a couple of days ago.  I wonder if switching my diet so much kick started this flare-up?

 

Hopefully eating keto will help in the long run.

[foam]

What i meant was in winter europeans had no carbs. Im assuming your european since 99% of celiecs and autoimmuners are. Mixing carbs and high fat diets isnt a natural thing it seems.

[Adasmama]

Hi all! I heard back from my Dr yesterday about my biopsy results. He said they came back completely normal and the only thing that he saw that was abnormal was excess bile. I'm scheduled to go in Friday to discuss it more with him. I feel kind of in shock. I was so sure that I have celiac disease. I've had symptoms my whole life, going back to about 6 months old. Plus, both my daughters were diagnosed in April ( before that I really didn't know anything about celiac). Is there any way that the biopsy can give a false negative? He took plenty biopsies, he said he took 12.

[nvsmom]

What i meant was in winter europeans had no carbs. Im assuming your european since 99% of celiecs and autoimmuners are. Mixing carbs and high fat diets isnt a natural thing it seems.

LOL  Did I ever misunderstand that!   

[nvsmom]

Hi all! I heard back from my Dr yesterday about my biopsy results. He said they came back completely normal and the only thing that he saw that was abnormal was excess bile. I'm scheduled to go in Friday to discuss it more with him. I feel kind of in shock. I was so sure that I have celiac disease. I've had symptoms my whole life, going back to about 6 months old. Plus, both my daughters were diagnosed in April ( before that I really didn't know anything about celiac). Is there any way that the biopsy can give a false negative? He took plenty biopsies, he said he took 12.

 

The endoscopy can miss up to 20% of celiacs, and you are more likely to be one of that minority of the doctor takes fewer than 6 samples, skips the duodenal bulb, or the patient does not eat adequate gluten (1-2 slices of bread per day) in the 2 to 4 weeks prior to the procedure.

 

Most celiacs are negative in at least one test, whether it is serum or the biopsy.

 

What blood tests did you have?  I think you said you were IgA deficient?  That in itself can point to celiac disease since 1 in 20 celiacs are IgA deficient but it is much more rare in the regular population.

 

If you are low in total serum IgA, That means that the tTG IgA, EMA IgA, DGP IgA, and AGA IgA would not work for you.  Your doctor should also have run the IgG versions of those tests: DGP IgG (deaminated gliadin peptides), tTG IgG (tissue transglutaminase), EMA IgG (endomysial antibodies), and maybe the old AGA IgG ( anti-gliadin antibodies).  Of those, the DGP IGG is the most sensitive, it catches 70-95% of all celiacs... which also means it can miss up to 30% of celiacs.  The tTG IgG is not as sensitive and can give false negative results over half of the time.

 

These reports have some info on the tests:

Open Original Shared Link

 

Open Original Shared Link

 

If you did not have those tests done, you could still do it.  You could also just assume celiac disease and go gluten-free.  I did that with my sons.  I have celiac disease, and it runs throughout my family, and two of my boys have celiac disease symptoms.  I actually looked into celiac disease for my oldest before I ever thought of it for myself.  Anyway, they could only get the tTG IGA test done, and it was negative.  I know the test cannot be trusted all the time so I made them gluten-free... and they are feeling better.  We act as though they have celiac disease, and the diet change did help so we will continue on this path.

 

If you wish, get a copy of your biopsy and post it in the Prediagnosis board.  We have a few members who know a lot about interpreting biopsies and they could give you an opinion on it.

[Adasmama]

Thank you nvsmom! I am going in to discuss what the Dr saw, etc on Friday. I'm going to ask him for a copy of every test result. I am IGA deficient. Plus, I expected the blood work to come back negative bc I had been gluten free for a week and a half when the Dr took the blood. I told him but he did it anyway. But I thought that the biopsies would be accurate since I'm an almost 34 year old woman who has had symptoms my whole life plus both daughters diagnosed. I didn't think my villi would heal that fast.

[nvsmom]

... But I thought that the biopsies would be accurate since I'm an almost 34 year old woman who has had symptoms my whole life plus both daughters diagnosed. I didn't think my villi would heal that fast.

 

The intestines probably wouldn't heal that fast, instead the doctors probably missed the damage.  The small intestine has the surface area of a tennis court, and they only biopsy a tiny portion of that.  That's why at least 6 biopsy samples is important.  The more samples taken, the more likely they will biopsy the damaged parts - celiac disease damage is not uniform.

 

I wouldn't be surprised if villi damage severity comes and goes too.  This is just my theory, but other symptoms seem to come and go.  Some months the headaches are bad, other months it is arthritis, and other years are bad for D or rashes... I wouldn't be surprised if villi damage is the same.

 

A negative test cannot discount a positive test - it just does not support it.  That positive is still there, and it was positive for a reason.    KWIM?

 

If the doctor did not run all of the IgG based tests, I would push him to do so, even if you are gluten-free.  Who knows, the results might even start coming down for you now.

 

Look through the prediagnosis board.  You'll see a number of posts of people in similar situations. Celiac testing has a lot of grey areas.

[Adasmama]

Thank you so much for all the advice nvsmom. I feel strongly that I have celiac disease but the Dr seemed very sure that I don't. I'm worried he's going to think I'm a hypochondriac for pushing the issue. I'm going to bring my husband along on Friday for moral support!

I read somewhere that you can ask for your biopsy slides and send them in to a celiac research center to be analyzed by someone experienced in diagnosis of celiac. Have you ever heard of that and if so do you have a recommendation of where I could send mine? A friend also recommended that I ask for the genetic testing.

I agree with you that symptoms seem to fluctuate. I'm still hesitant to share but that's what this forum is all about right? I've had chronic diarrhea my entire life, starting at 6 months old. My family thought I was allergic to everything. My parents took me off of everything but pears, rice cereal, and formula after an illumination diet. But as I grew older I guess they assumed I grew out of it. I thought I was allergic to something common that was in everything but I couldn't really pinpoint what caused my "attacks" as I called them. It got really bad in my teens and early twenties. I started having a lot of blood in my stool at twenty, got scared and went to a clinic. The "Dr" didn't take me seriously and said I probably had hemorrhoids. I have an uncle with Crohns disease but he was even dismissive about that. So, I just assumed my chronic diarrhea caused hemorrhoids and told no one bc I was so embarrassed! Three years later my chronic diarrhea went away for a few years. The first few times I had to go number 2 without stabbing pains in my stomach I was like, "hmm, I think I have to poop?!" so, I guess bc of embarrassment and just being used to it I never thought about my digestive issues until my girls were diagnosed in April, then it all started making sense. And the symptoms really started to add up from my past. I'm definitely going to post on the pre diagnosis section after my appointment Friday. Everyone here is so helpful!

[nvsmom]

I think being called a hypochondriac should be a sign of celiac disease.  The people around here who did NOT have their symptoms dismissed at one time are definitely in the minority.

 

I'm afraid that I don't know about getting the biopsy slides checked by others.  My guess is that it would not be worth it because the slides probably show little (Marsh 1) to no damage.

 

The genetic tests are for the DQ2 and DQ8 genes.  97% of celiacs have at least one of those genes, which means about 3% do not.  If you have negative genetic tests it means that it is unlikely that you have celiac disease, If you have a positive it means you are in the 30% of the population who is at (higher) risk of developing celiac disease and if it is negative it means your chances of getting celiac disease are small.  

 

I was the exact opposite of you growing up.  I had chronic constipation from babyhood - back when they introduced solid cereal at 4 weeks old.  I didn't realize I had C though because I always had C.  There was nothing to compare to.  By age 22 I developed hemorrhoids, and I remember going to the doctor to say "I either have hemorrhoids or I am growing a tail."  LOL  I remember being shocked at the amount of blood those things could make.  Yuck! When my BM's finally normalized about 2 years ago I thought I had D.  I was not used to having any BM urgency, at all.  I remember being shocked at how much toilet paper a normal stool needs (C barely needs any).

 

Anyways, I shared my embarrassing story to say what you've got isn't unusual.  I'm glad you are looking into it.

 

Dr Fasano, a leading celiac disease reasearcher, states that to be diagnosed with celiac disease a patient should meet 4 out of 5 of the following criteria:

1. celiac disease symptoms
2. positive blood test (usually tTG or EMA)
3. positive biopsy
4. positive genetic test
5. positive response to the gluten-free diet

I only have # 1, 2, and 5 since I skipped the biopsy and genetic tests were never offered.  You already have #1 and 2 so don't dismiss it too easily.  It is possible you do not have celiac disease but with positive test, symptoms and celiac disease in the family, it is the most lilkely scenario.

[Adasmama]

All of my blood work came back normal too. The Dr ordered the endoscopy and blood testing just based on my daughters diagnosis and my symptoms but everything came back normal. Though I am iga deficient.

[nvsmom]

So they ran the DGP IgG, tTG IgG and EMA IgG tests and they were negative?  

 

Because you are low in IgA, all IgA based celiac tests will be negative even if you are a celiac.  The tTG IgA, DGP IgA, and EMA IgA would be useless for someone who is IgA deficient.

 

If those first three tests I mentioned were done and they were negative, you are probably not a celiac, in which case it could be something like non-celiac gluten sensitivity (NCGS) or FODMAPS or something else.

 

If those tests were not done, there is no way to know for sure if you are a celiac.  Don't trust the doctors word that "celiac tests" were run.  Sometimes they only do one or two, sometimes they do the old AGA tests, and sometimes they will say it is negative without telling you that you are 0.01 away from being positive.

[foam]

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.

[Adasmama]

I go in today to the Dr and I'm going to get the copies of all of my test results, so we shall see. Nvsmom, I'm not sure which blood tests were run but he said all four markers. I wasn't expecting the blood work to be accurate anyway because I'd already been off of gluten for a week and a half when it was drawn, I was hoping the endoscopy/biopsies would give me definitive answers but it seems not.

The genetic factor seems huge to me. Thanks for mentioning it foam. I thought we did everything right with our two baby girls but they both ended up with celiac at such a young age. It makes sense that they got the genes from both me and my husband. Every time I read those studies that say breastfeeding is protective against celiac or at least can delay onset of the disease, I say, "not with my babies!" both girls were exclusively breastfed and I was very careful about adding solid foods (bc I thought I had food sensitivities). My oldest breastfed till 18m and youngest until 23m! My youngest was still nursing when she started to show classic symptoms of celiac back in January. They obviously have some strong celiac genes.

[nvsmom]

A bunch of studies came out a while ago (a few months back) about how breastfeeding does not protect against celiac disease.  Apparently that was a myth that they think they have debunked.  I think the only way BF'ing protects against celiac disease is that the baby is not given formula that could have wheat in it.

 

Plus, it is thought , by some, that gluten may pass into breast milk which can start the celiac disease reaction in very young infants.

 

For other conditions, I think BF'ing is helpful, so be glad that you gave them that.    You probably did do everything right - this is just the luck of the draw.

 

Let us know how it goes with the doctor.

[Adasmama]

I have all my results. I was trying to figure out a way to share them on here but I don't have a scanner at home. I took pictures of them but I don't know if I can add it to this post. I'm so technical, as you can see! Anyway, I'm planning to call the lab Monday morning. The Dr made it sound like I had perfectly healthy intestines. But the pathology report mentioned gastritis, endema, and petecchiae in the stomach and congestion, endema, and inflammation in the intestine. It says surface epithelium and brush boarders are unremarkable. The Dr sent 8-10 biopsies to the lab but I'm concerned that they only annualized three bc that's all I see on the report.

[nvsmom]

Once you are ready to share results, post it in the prediagnosis section.  I can't help a lot with biopsies - I haven't read up on them much.

[nvsmom]

Keto is working for me.    I've cut calories to about 1700, and am in ketosis.  I am most of the way through the adaption phase but I think I'll feel even better in a few more weeks.  So far so good.

 

I feel less foggy, which is crazy since I didn't think I was foggy before, and I can concentrate and absorb information better... pretty cool.  My arthritis in my hips and knees is a bit better, but that could also be due to less coaching and activities.  

 

I'm in a bit of an autoimmune flare-up which started shortly after changing my diet, but that tends to get worse before it gets better when I change to a healthier way - it also happened when I went gluten-free, started thyroid meds and when I switched to a better thyroid med too.  It isn't extreme, just a sore throat/sinus, fatigue, and a short lived arthralgia in my shoulders.

 

My fasting blood glucose is pretty good too.  Mostly in the 4's but it does jump into the 5's, and even prediabetic zone, if I eat more than 60g of total carbs in a day. It's crazy what a quarter of an onion can do! I was in the tip of the prediabetic range before I changed my diet so this is all very good.  

 

I'm also losing weight.  I think I've lost about 9 pounds in the last few weeks but I'm not exactly sure where I started.  LOL

 

I like this way of living.  I think I'll be able to do this long term