Healing the Gut Question-Am I even on the right track?

[maryamb]

My almost two year old son was diagnosed with a leaky gut in December after doing a food sensitivity test.  His doctor (who's been absoultely wonderful) said he has a leaky gut due to the number of food senstivities that came back in the results. 

The reason that we took the test was because a few weeks after he was born, he ended up with a diaper rash which his doctor said is due to food sensitivity.  I cut out dairy and gluten and it went away.  However he ended up with reflux which his doctor said is due to food sensitivity.  I continued on the dairy/gluten free diet and a homeopathy medicin (sorry don't remember what it was) and it was under control.  Then at six months he got eczema which his doctor said was due to food sensitivity.  For the life of me I could not figure out what other than gluten/dairy it could be.  At 10 months I finally figured out the third sensitivity: CORN!  Which is in everything.  Thinking that he was sensitive to Corn all along and not dairy I introcdues dairy back in (big mistake.) At 12 months he got constipation which his doctor said was due to food sensitivity.  At 15 months still dealing with constipation his doctor said to cut out dairy. Scared and naive at the time that I was cutting too much fom his diet I cut and dairy and added gluten (another big mistake).  Constipation issues continued.  At 20 months we did the food sensitivity test which confirrmed that he's sensitive to Corn/gluten/dairy (intolerance, not allergic) along with a leaky gut.  A lot more knowlegeble by this point, I cut all grains/dairy/corn from out diet.  He takes cod liver oil, priobiotics and vitamine supplements every night.  I try to give him green smoothies and fermented vegetables every day or every other day.  We try to incorporate honey and coconut oil when possible.  It's hard to do every day because he's so young.  After a month on this diet he started to go a lot more regulary, his eczema was completely gone, unde eye circles were compeltely gone, glue ear was gone.  Then his bowl movements when to the other spectrum.  They were loose and sometimes had undigested food in them. His doctor kept assuring me that this was part of the process.  This lasted for two months.  Then about three weeks ago all of a sudden he started to have formed bowl movements and went everyday for two weeks except for one day each week.  I thought he was cured, so excited! Then he started going every other day and now he hasn't gone for two days. 

Am I back to square one?  How long is it going to take for him to heal and have regular bowl movements?  What I am doing wrong?  What else should I be doing?  How do I know he's healing?  I am so frustrated and I feel so defeated at this point

[myjo]

I'm so sorry, I feel like crying for you because I've been through it too, and I'm going through it now.  I don't really have any advice, but I would like to share my experience just so you don't feel alone in this.

  My youngest ds has been struggling with asthma since he was 18 mos old.  It got so bad that we ended up having to put him on a preventative inhaler, which improved symptoms immensely, but I know was not getting to the bottom of things.  He's been in kindergarten for the past year, and has been doing okay until he recently caught a bad cough with sinus infection.  Well, the allergist prescribed and antibiotic of course, but I as usual decided to give him olive leaf extract instead since it always helps him with infections.  Well, his sinus infection seems to have cleared, but his allergies have gotten worse, and I'm starting to realize that it ironically was probably because of the olive leaf.  And I think I know why.  The olive leaf killed off mass amounts of yeast and bacteria in his gut, which probably increased his leaky gut problem since the yeast will actually burrow into the lining of the gut, and when it dies, it leaves holes.  This has happened before with the olive leaf, but only when he has to have a lot of it.  I'm so frustrated because I've been trying to decrease the amount of medicine he has to take, and now I'm having to increase it again because of the leaky gut.  Argggh!  I just feel like I can't win no matter what I do. 

I have a question for you - what fermented foods are you giving to your ds?  I want to get my ds back on something fermented, but I don't know what I could give him that he would actually eat.  He's allergic to dairy, so yogurt or kefir is out.

I hope you find out what is causing your ds to relapse.  I know it's so hard to feel like you have to play detective all the time.  It's very stressful.  What helps me is to write down what I can remember from the past few days or weeks, and then review it, looking for clues as to what could have changed or caused problems.  And also, remember that not all physical symptoms are caused by diet.  Sometimes stress plays a big role. 

[maryamb]

Thank you so much for sharing your story, I know how difficult it is trying to heal the person you love most on this earth and not see results or take steps back :( 

I had no idea that yeast burrowed in the lining of the gut.  There's so much to learn and it feels like it most of is learned the hard way.

I give him Bubbies Sauerkraut and pickles which are supposed to be minimally processed and have live cultures.  I get them from the refrigerated section at whole foods.  Also, I found water kefir that you can try.  I'll find the link and post it.

Do you think teething could cause his constipation?  The only thing that I can think of right now is that he's teething.  Also, I had some cramps and took Advil which I found out of course it has corn syrup.  I wonder if that caused it by passing through my breast milk.

Are you trying any special diet?

[mama.rye]

we are on a constant roller coaster for the past 1.5 years with all of this plus salycilate intolerance too.  ((hugs!!))

its hard with poops and i feel like i am always overanalyzing them b/c of the leaky gut and intolerances.  sometimes though, i have had to accept, a toddler might just have bad poop days and it might not be anything... or its something and i dont know until i record those days and find the common thread.  peanut butter is the latest culprit.

do you keep a food journal?  do you rotate foods?

there are many more knowledgeable mamas on here than i.  i really liked the book "Digestive Health for Children" by Lipsky.  That helped me get my head around it a bit more...  applied kinesiology and chinese medicine helped us, and straight up traditional chiropractic adjustments were HUGE for seeing improvements in sleep and poop.  we saw a pediatric chiropractor for the past 12 weeks and even his appetite is improving. 

good luck on your journey! 

[maryamb]

Thank you for your response.  1.5 years?  That is a long time, I am so sorry that you have had to deal with this for so long. 

Are you guys on a special diet? 

The poop situation has become an obsession for me.  I think about it all day and stress about it if he doesn't "go".  Then I work at trying to "make him go" during the remainder of the time.  It's just eating me up not seeing progress after all of the hard work.  At least I know I am not the only one struggling with this. 

I do not keep a journal, maybe that's something I should try.  I do rotate foods based on the food sensitivity test results.  Some things I haven't been as diligent as I should be, for example we have chicken more than twice a week even though he should only have a twice a week and we usually have garlic more than once a week which is his limit.  Also we have almonds and cashews more than twice a week because that's the only snack that we have left.  I wonder it these are causing our situation to relapse.  Just cant win :(  Is this leaky gut something that's going to go on forever or does it  actually heal one day?

Thank you for the book suggestion, I just ordered off of Amazon and can't wait to read it.  I am going to look into the chiropractor.  I am so glad to hear that's worked for you. 

Good luck and thank you again for the suggestions!

[maryamb]

Here's the link to the water kefir:

http://www.waterkefirgrains.com/

[KKKK74]

I share your frustration - we've been on the leaky gut path with DS (2yrs 11 mths) for a couple of years now (although only one year knowingly !). We got our first ever solid poo a couple of weeks ago and everything seemed to be going well, and with all our interventions I thought things were healing - then this morning last nights food was there in his nappy almost identically to the way it looked on the plate last night ! No idea why but obviously no digestion had occurred at all.  

[myjo]

Originally Posted by maryamb 

Here's the link to the water kefir:

http://www.waterkefirgrains.com/

Thank you!  I need to get back to making more things.  I used to make water kefir with grape juice and milk kefir grains.  I was just thinking I need to try to find some water kefir grains.  The sourkraut might be hard to find here.  We live in a backwards backwater. 

I definitely second the chiropractic suggestion.  It does work, and I've gotten away from that too.  I need to get back on track. 

I'm trained in reflexology, so when my kids feel under the weather, or they can't go bathroom I will give them a treatment.  It really works.  It even seems to elevate their mood.

The only thing special about ds' diet is that he avoids dairy, and I try to keep him away from sugar and all other processed, refined foods.  I also try to avoid corn sometimes, usually just during an illness.  The reason we don't do the rotation diet is that it drove me bananas.  It was so annoying to be so very careful about food, and then sometimes they would be just as sick as ever.  Totally frustrating.  I just try really hard to make sure he eats organic whole foods.  Lately that has been somewhat derailed because of me working and ds going to kinder.  Next here he's homeschooling.  Public school is not worth all the infections and health problems.

[myjo]

I just ordered some water kefir grains! 

[maryamb]

Thanks everyone for sharing your story.  It helps to know that I am not the only one struggling with this :(

I had his two year doctor appointment yesterday and the doctor said that I need to be more diligent with the rotation diet.  It's really difficult because we eat the leftover meat at dinner the next day for lunch since I have to work so it's really hard to not have chicken two days in a row.  But I guess I have to try harder.  I also have to give him the Lara bars every other day at least which sucks since really that's the only snack food we have left after all corn/dairy/grains are cut out plus the strict rotation diet.   She also said that it takes minimum one year for him to heal and even that time is dependant on how good I am with the rotation diet.  I guess this is going to be long uphill battle.  But I am going to try my hardest!

I am definitely going to look into the chiropractor, I think it's an excellent idea.  I am not familiar with reflexology but read about it in an issue of mothering magazine and it definitely intrigued me.

[mytwomonkies]

Have you looked into the SCD diet for healing the gut? http://www.breakingtheviciouscycle.info/

[mama.rye]

How's it going with your little one?

The rotation diet is so hard. We tried and failed. I just was in the kitchen or in my head all day about food and it was always getting off track, and then I felt like a failure. Now I just try to not do too much of one thing (recently we lost rice because it was too easy to do rice pasta, rice cakes, rice milk, etc.) so we have to take that out. Usually if we avoid it for a month, we can reintroduce in small amounts.

Are you doing any supplements or bone broth?  Digestive Enzymes?  We did a regimen of enzymes, broth, and probiotics every time he ate and saw major improvements in appetite and tolerance levels. The Lipsky book gets into supplements quite a bit. Healing with foods is best, but it can be so demanding. If you are doing kefir you are on the right track!  I would also follow the wisdom of pat on her website and facebook pages. http://heal-thyself.ning.com/

It's a journey, one forward, two back. As soon as I stopped thinking about how long I would have to live like this and stopped trying to "fix" him all the time, it got easier. Make changes, read your child, reach out, educate yourself, and slowly slowly slowly he will heal.  There are many days I cry in anger and frustration and feel it is so unfair that we have to live this way (no birthday party fun for him, no eating out ever, no treats) and then I remind myself he is healthy in so many ways - bright and capable and able to walk and run and talk and smile and will live a "normal" life one day (with all the other folks dealing with food sensitivities! This is fast becoming the norm.)

xo

[maryamb]

I looked into the SCD diet and asked my doctor about it and she said his leaky gut is not sever enough where I have to do this diet.  She said removing grains/dairy along with a rotation diet should work.  Even though I have seen significant improvements overall, we are still dealing with constipation on and off and it does feel like I am taking one step forward and two steps back.  So maybe I should seriously consider this diet regardless of how time consuming it may be.

[maryamb]

My little one is doing better since I posted but we are not over the hill yet    I think when he stopped going to the bathroom for four days was directly linked to me taking advil since it does have corn syrup in it.  Next time I have to find better pain killers, I don't even know if any exist that I can safely take!

He's still not healed and it's been six months that we have been on the grain free, corn free, dairy free and rotation diet.  He does not have bowl movements every day but at least now it's down to every other day or every two days.

The only comforting this is that I am not alone.  I have never tried so hard at anything. 

I tried making bone broths a few times but he does not touch them. I  even tried making soup/chili with them but he does not eat a lot of either.  Is there a trick to having the little ones drink these?  Do I just have to include a little in all his meals?

I asked his doctor about digestive enzymes and she wanted me to heal him purely through diet.  At this point I am willing to go against her suggestion given everyone's input and what I read regarding how helpful they are in healing leaky guts.  Is there a brand/dosage that you recommend for a two year old?

We do probiotics once a day, should I do with every meal instead?

We also supplement with Vitamine C, b12, cod liver oil and a multi vitamin every day.  His doctor said that we should add vitamin b complex along with glutamine to the mix as well but have not done so.  I added the above based on everything I have read on these forums.  I have learned so much from all of the wonderful moms that write on the forums and share their stories.  

We also try to do the green smoothie every other day and sometimes he drinks it and sometimes he has just a few sips!

Thanks for the link to Pat's website and facebook page.  I'll check it out today!

How old is your little one and how long have you been working on healing his/her gut?  Thanks for sharing your story.  I definitely feel the same frustration/anger/sadness that you wrote about.  This has pretty much consumed my life, either I am thinking about it, analyzing it, researching it or working on it!  This is truly a full time job. I just hope that he heals.

 

[maryamb]

I forgot to mention that we also supplement magnesium and do epsom salt baths

[KKKK74]

I'm in exactly the same dilemma as you over the GAPS/SCD diet - see the other leaky gut thread

I wish I'd done GAPS/SCD at your stage and cured the leaky gut earlier for the following reasons

- it is easier when they are younger and less aware of what food others are eating - once playdates and birthday parties and pre-school snack times are intorduced it get much harder (and harder still i'm sure the older they get)

- I believe (but with no concrete medical knowledge!) that the younger they are the quicker they heal

- if the leaky gut is bad then they will just get more and more intolerances - my son's gut is so bad and he has so many intolerances that is is now hard to do GAPS and there is always a greater risk of him becoming intolerant to the GAPS foods 

- by not healing his gut at a younger age we have allowed him to become nutrient deficiant from malabsorbtion, this has affected his liver and methylation pathways, this means he has stored heavy metals, these affect his cognitive abilities and promote candida - this makes his leaky gut worse !

Obviously I can't comment on the severity of your son's gut and can't promote a limiting diet for him when his doctor says he doesn't need it - I just know now that I wish I'd done GAPS a year ago and we wouldn't now be in the severe state we are currently in.

Good Luck x

[maryamb]

Things took a turn for the worst today   He had diarrhea three times today with undigested food in it.  Normally they are loose but now it's flat out diarrhea.  To make matters worst his eczema which has been gone for 5 months is back (very mildly but it is back ).  Two things that changed:

I gave him probiotics in the morning (before breakfast) yesterday and today.  Could that have caused it?

I also started a new brand vitamine b12 from Trader Joes.  Could this have been it ?  The dosage was 1000 but I gave him a quarter of it. 

I am really really frustrated.  I feel like this is a MAJOR step back.  Nothing has changed with his diet except I have been VERY diligent with the rotation diet for the past two weeks.  I don't know what else to do.  This is driving me crazy.

Today I bought some digestive enzymes and gave him a very small amount with dinner.  I am terrified of what it could do given how today went.

Could this be die-off or is it just very wishful thinking?

Also, when is the best time to take vitamins?  I am giving it all to him after dinner, is this bad?

Any feedback is MUCH MUCH appreciated. 

I just want to cry.

[abelitz]

Originally Posted by myjo 

Thank you!  I need to get back to making more things.  I used to make water kefir with grape juice and milk kefir grains.  I was just thinking I need to try to find some water kefir grains.  The sourkraut might be hard to find here.  We live in a backwards backwater. 

I also live in a place now where the closest Bubbie's saurkraut is at least 150 miles away!  Luckily for us, fermenting vegetables is extremely easy!  The Lactobacillus bacteria that veggies need to lacto-ferment are already on them.  All you have to do is cut up your cabbage finely (the consistency you want your kraut), sprinkle it liberally with course sea salt, and massage the cabbage with the salt until you can squeeze water out of it.  Put it in a quart jar, squish the cabbage down tightly with your fists or other kitchen utensil to where the liquid coming out of the cabbage (the brine) covers the cabbage itself, cover the jar with cheese cloth and let it sit until it's fermented to your taste (1-4 weeks, or longer).  If any mold starts to grow on top, simply skim it off without disturbing the packed cabbage underneath.  While a little scum may form on top where the brine meets the air, the cabbage protected beneath the brine is unaffected.  When your ferment has reached your desired tanginess, place it in the refigerator to slow the fermentation and enjoy.  You can throw other veggies and/or herbs in with the cabbage.  The only limit on that is your palate and imagination.  The general rule of thumb is ~1 (plus a little) lb of vegetables/quart jar.  I recommend using large mouth jars.  Personally, I enjoy adding a little fresh ginger root, finely grated, (very much gets spicy quick!) and beets into kraut-like ferments.

The best book for learning about making your own ferments is Wild Fermentation by Sandor Katz.  It's engagingly written and easy to follow.

maryamb, are you using any herbal remedies to help your DS?  A small amount (1-2 Tbsp) of fennel seed tea before meals may help set the stage for better digestion in your little guy.  You can also drink it and pass it on through breast milk.  Rosemary Gladstar has a couple of very nice gentle herbal recipies for diarrhea/constipation in her book Family Herbal (I think it may be published with a slightly different name now).  Slippery elm bark and marshmallow root are recommended for their soothing mucilage (will cool an inflammed GI tract), and astringents like witch hazel (tincture, not the clear stuff for hemorrhoids) and especially berries help combat diarrhea.  Blueberries are great.  Rosemary recommends making a tea out of blackberry root, but any berry (Rose family, ie. blueberry, blackberry, raspberry, strawberry) root, leaf or fruit could be helpful.  Also, have you also eliminated soy?  From your diet descriptions, it seems like you have.

Just a couple of thoughts...I do hope he feels better!  Oh, and I do think that taking supplements with meals is the way to go.

[jewellz]

I third trying SCD. I myself am on it to heal my leaky gut-kiddos were reacting to my breastmilk-and I'm feeling better. Been on it for 5 months. I've actually lost 26 lbs-that I needed to lose. My hair is shinier. Bowels got better. Other symptoms got better. Overall I would really suggest talking to the support groups I'm on because they could really help you. PM if you want to know more info about them. Or if anyone else wants to know-PM and I'll give the info. But just to let you know, you MUST follow it 100% for it to work. But I believe it truly is a healthy diet and will work.

[maryamb]

Thanks everyone for the replies. I am seriously considering the SCD/GAPS diet as that maybe my only choice to cross the thresh-hold.  I just wish that I had seen better progress after being on a 100% grain free/legume free/dairy free and 95% corn free diet for almost six months.  I mean as it is we hardly eat any food that's illegal on the SCD diet but obviously I am not following it 100%. 

Things got even weirder over the weekend.  I gave him digestive enzymes on Friday night (1/3 capsule with dinner only) and Saturday was a mess!  He had mucusy diarrhea four times.  It totally freaked me out.  The only comfort was that on-line it said it could be die off.  Regardless I got scared and now have bought a a milder one.  I gave it to him last night so we'll see how today goes.  Yesterday even without the digestive enzymes he had three very loose undigested food bowl movements so things are obviously just not right :(

We went to the doctor yesterday just because I wanted some answers.  She said enzymes would be very beneficial to him if I can find the right dosage and that may be hard.  She said it's better if he eats papaya with each meal.  He hates papaya so I think I am going to stick with the enzymes and see if I can make it work.  His supplements which she approved are now Magnesium, Probiotics, Cod Liver Oil, Vitamin C, Multi Vitamin, Vitamin B Complex, Glutatoine and digestive enzymes.  Seems a lot for a little two year old!  I am also considering vitamin B12 and L-glutamine. 

The doctor said that he's on the right track based on his skin tone, weight gain and activity level.  His bowl movements freak me out though and I just don't think I have made enough progress given how hard I have worked on this over the past six months.  I just have to convince myself that I can do the GAPS diet and give it 100%.