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Babysteps to Gut Healing... a log of our progress

post #1 of 14
Thread Starter 
I come to this forum frequently because I have a very small child with multiple food allergies and random reactions. But I don't stick around because I am very easily overwhelmed by the vast amount of knowledge on this forum.

So this thread is going to be my toe-hold. I intend to log our efforts to heal the gut of our 3.5 year old son and to catalog the questions and answers I encounter in the next two posts; this one is a quick introduction to our situation.

REGARDING DS1

WEIGHT/HEIGHT:
at 3.5 years, he weighs just over 26 pounds and is about 36" tall. He is in a slow slide down the percentiles. Very slow. But perceptible.

FOODS:
IgE-- is that the skin test result? He had positive skin wheal reactions to:
dairy, egg white, tree nuts.
We have had shellfish twice in his life, and he had pronounced diarrhea afterwards both times.

As for the other things, he sometimes reacts and sometimes doesn't. (Citrus and strawberries in mass quantities causes a rough rash and a peeing frenzy, and body-wide terrible hives in even larger quantities. Soy sauce, pineapple and tomato has caused a red rash to spring up around his mouth before, but not always, and kiwi and pineapple make the inside of his mouth itch sometimes. We suspected salicylates, and try our best to balance high-intake days with more sulphur-containing foods and epsom salt baths, which seem to help.)

Gluten we've pulled "just to see."

SLEEP:
He started sleeping through the night at 2 years and 2 months. Before that, it was approximately every 3 hours that he would wake, and as a newborn, sometimes every 45 minutes for weeks a time. I know others have been through worse, but I'm still waiting for a medal for surviving his infancy, what with the colic, bloody diarrhea, and eczema.

SKIN:
Body-wide eczema as a young thing pre-dairy elimination. Mostly gone after dairy was cut out, but occassional, apparent "random" bouts made me crazy with detective flurying. He also had rampant, consistent diaper rash not associated with BMs, though he has always been EC'd and rarely sat in wet pants for longer than 5 minutes. His groin rash brought me to tears. It would appear suddenly, and in full force, and then be gone on its own terms. Around 2 or so years (around the time he began to sleep better) the rash disappeared.

He occasionally deals with eczema behind the knees and rough skin all over his body, but we seem to have figured out the triggers for the all-over body hives. (Those bouts were awful.)

URINE:
At 3.5, still has bouts of urinary incontinence. Sometimes these do seem to be regressions and cause by normal bouts of preschooler-stress; other times they last for a couple of days and seem to surprise him. I have noted what I think is a correspondence with too many salicylate-high foods.

He almost always dribbles a bit in his undies before making it to the potty.

STOOLS:
Mostly undigested and recognizable food, mostly floating, always copious amounts, often twice a day. I seriously do not understand how, even if he were pooping out everything he was consuming, he could be pooping that much. On occassion we get a formed, dense, solid little poo that goes to the bottom of the potty and I have no idea why. I feel that we saw more of these immediately after going off gluten.

He often has greenish stools.

If a stool is not green, it is most likely to be orangey, and those occassionally are tinged with bright red blood. Sometimes I see blood somehow inside the poop, othertimes it just seems to be around the anus.

He has never, ever been constipated. (DS2 has been three or four times in his 17 months, so I know what it would be like.)

OTHER:
He has a terrible appetite. I am following Ellyn Satter's advice, and I do not feel it has helped one twit getting him to eat more. Other parents have remarked to me about how little he seems to eat. (Of course, most other parents are okay with bribing their kids to eat or coercing them to do so; we felt that doing either was ultimately backfiring and causing him to feel eating times were stressful.) Lunch today: a bite of a cracker with humus on top. three bites of a carrot. The corner off his soy cheese. 1/4 cup of kombucha. Voila!


He craves baking powder, and we have to keep it hidden and under lock and key. He also really likes ice, but what preschooler doesn't, right? But yes, he is iron-deficient anemic.

He has a heart murmur that was determined by a pediatric cardiologist to be benign, but of unknown origin.

He has asthma that flares up only with colds.

He loves raw sulfur containing veggies (MMM! KALE!) and drank with glee a batch of kombucha that had been brewing for 11 MONTHS. (That's another thread.) (And yes, there was backlash in his skin after that.)

I crave sugar like mad. And I give it to him more than I feel right, but we did see a nutritionist that scolded me for not giving him more sweets since he so obviously needs the calories, and that left me feeling detached from my best instincts.

He is still breastfed. Probably an average of 1.5 full feedings in 24 hours. I hate nursing him, but feel compelled to do so.
post #2 of 14
Thread Starter 

Babysteps

1/27/10: GOA:L: Begin being more regular about probiotics and kombucha.

GAVE HIM A WHOLE EGG TONIGHT after raw whites did not cause an immediate contact reaction. He ate the entire thing (!) with no (immediate) ill effect. WHAT? We shall see what the night and morning bring. (I predict: bloody diarrhea.)
post #3 of 14
Thread Starter 

Questions and answers

1. Is kombucha any less effective than kefir?

2. When do I know I need to do a celiac-proof elimination of gluten? So far, we have spent 5 months eliminating gluten, but DH still eats it in the house, and we have wood cutting boards and utensils, non-stick frying pans and griddles that are shared, etc. I have not investigated our toiletries for gluten. In short, when do I follow this excellent advice?
post #4 of 14
Thread Starter 
As per this thread, I wish to begin supplementing zinc. I went to the brainchild nutritionals website, recommended by mamafish, and the link to the "more info" write up for the zinc supp is not working. We are already giving a probiotic (with as many meals as I can remember to do) a multi (Nordic Naturals) and Dr. Ron's fermented cod liver oil. He takes fluoride, too. He drinks kombucha with glee, but I have not been good about giving it to him regularly.

Is Kombucha any different from kimchi or kefir in terms of gut healing?

So zinc... that's the next thing. Right now I will focus on making the probiotics and kombucha more regular.

Advice about zinc??
post #5 of 14
Thread Starter 
So the egg is a pass! We have egg back! It caused absolutely no difficulty whatsoever.

I don't remember who asked how long it had been since we trialed that one-- thank you, whoever it was. It is so exciting to have a food back!

Here is the zinc link. (wink.) http://www.brainchildnutritionals.com/Zincx.html

Does anyone happen to know is the "Krebs chelates" used to make it are shellfish?


Nevermind- found out here.
WARNING: Contains ingredients derived from shellfish. Those with any kind of shellfish allergy or sensitivity should consult with a medical practitioner
before using this product.

Hmmm.
post #6 of 14
Thread Starter 
Ok- So I am going to go ahead and order a zinc/C combination from JaneS's website and we'll see how that goes.

He is already taking a multivitamin and gets 2-4mg of zinc citrate daily, but if he is deficient, it seems like that wouldn't be enough.

Next step will be to explore WhoMe's suggestion, here taken from another of my threads:

Quote:
The list of foods you're avoiding sounds a lot like the histamine lists, especially the redness from tomato and pineapple but only sometimes. Folate and B12 are needed to make methyl groups and to clear histamine, and B12 is one of the hardest vitamins to absorb - slightly low stomach acid and you're almost guaranteed to be low. With zinc to address the stomach acid/digestion, I'd also look at supplementing sublingual methyl B12 separately to help get back some of the other foods.
The sublingual B12 stuff is also available at JaneS's website, but the directions say to hold it under the tongue for 3 minutes before swallowing. I can't get my 3 year old to do anything that involves stillness for 3 minutes (except for watch a you tube video, I guess.)

Thoughts?
post #7 of 14
Thread Starter 
Wanted to note here that folate, B12, and iron are often deficient in folks with celiac disease.

We got our entero labs tests back for O, and they claim to have found anti-gliadin and anti tissue transglutaminase... both suggest celiacs, but at the very least indicate gluten issues.

we are on a full-on gluten challenge right now, ramping up for a blood test and our first appointment with a peds GI doc.

have not been as good about the probiotics as I mean to. need to do that. also never did order a zinc supplement.
post #8 of 14
You have cut out a bunch of foods but I would still suspect something else if you are seeing issues with stool. What about cutting soy out as that is a very big known allergen?

I thought that your list of foods sounds like histamine foods. We have issues with those foods too.

And a thought about your child and eating, perhaps he gets filled up on kombucha. Will he drink that between meals?

And another supplement to think of, have you tried molybdenum? That has really helped with my dd's healing.

Floride? Yike! That could be a big issue here as it is a poison. Very hard on the gut.
post #9 of 14
Quote:
Originally Posted by Aletheia View Post
As for the other things, he sometimes reacts and sometimes doesn't. (Citrus and strawberries in mass quantities causes a rough rash and a peeing frenzy, and body-wide terrible hives in even larger quantities. Soy sauce, pineapple and tomato has caused a red rash to spring up around his mouth before, but not always, and kiwi and pineapple make the inside of his mouth itch sometimes. We suspected salicylates, and try our best to balance high-intake days with more sulphur-containing foods and epsom salt baths, which seem to help.)
I was thinking histamines too- perhaps in addition to sals. Soy sauce is low in sals, but very high in amines.
Here's a page for histamines, in case you haven't seen it before:
http://www.urticaria.thunderworksinc...whistamine.htm
post #10 of 14
Soy sauce also has gluten in it...
post #11 of 14
Thread Starter 
Thanks, guys.

Soy could be a problem, I suppose-- but he has never had obvious and quick reactions (IgE?) to soy.

The histamine/amine stuff is not new to me-- I sort of suspect that both cause him problem in large quantities. Do you treat them differently? The Epsom salt baths work really well-- would they work for amines? I definitely get the red, ruddy face (as do many of our family, on both sides) when drinking even the smallest bit of red wine. Isn't that an indicator?

We will think of soy when we are done thinking about celiacs-- one thing at a time. His stools, strangely, have still been loose, but not full of bits of food lately.
post #12 of 14
Thread Starter 

Made this post a separate thread, and then decided to post it here too.

Ovi is going to be 4 in a month. He is dairy and tree nut allergic, and we suspect shellfish as well. He has consistently gained weight except for when I was PG with DS2 and had no milk (he still nurses what I guesstimate to be about 16 ounces a day.) However, he is short, skinny, pale, iron-deficient, and slow to grow hair (I cut his brothers two times for his ever once.) He has loose bowel movements all the time. Cutting back on fruit (very hard to do), adding kombucha, using a digestive enzyme... these things seem to maybe help somewhat.

He had an issue over the past year of rectal bleeding, and when it got bad enough that there was blood dripping into the toilet, even though we were at the end of a 5 month gluten elimination period, we added it back in to get ready for a celiac blood test. We also did the Entero Labs test. We also made an appointment with a Peds GI doc.

The EnteroLabs test reported that he does have heightened anti-gliadin IgA and elevated anti-tissue transglutaminase IgA as well. He did not appear to be malabsorbing, however.

The blood test revealed nothing, except for that he is more anemic than he was a year ago.

Now to the point: the Peds GI said that the bleeding is probably due to fissures (I agree) which are likely caused by the chunks of undigested food in his stool passing through his system too quickly (I also agree.) But he then said that this is "completely normal." He seemed especially encouraged by the fact that Ovi has only 1 bowel movement a day. He said that Ovi probably just has intestines that have "rapid transit time" and that it is easier to see undigested food because the stool is so loose.

He said he absolutely positively does not have celiac disease, and that he probably isn't gluten sensitive either.

Advice? We are on gluten, mainly because my biggest problem with Ovi and food right now that the bleeding has stopped is getting him to eat anything other than fruit. He used to show signs of being a little salicylate sensitive, so I hate feeding him fruit. But it seems better than not feeding him anything.
post #13 of 14
Hi, I'm not sure if you wanted replies on this thread or if it's just for your personal record, but just wanted to say that we saw no improvement whatsoever until we took out all the top 8 plus corn and also limited fruits. I did the one item at a time trial for the longest time and saw no results whatsoever (except for eggs in the first year. his chronic diarrheao stopped the very next day).

My ds2 (just turned 3yrs old), had the kind of stools you described earlier but without bleeding - copious, disintegrates, floats, strange colors, etc - until we went on the full elimination. I also took out nightshades, including all fungi. It took 3 weeks before we saw clear improvements. His stools are now very nicely formed.

The only clear reactions ds2 ever had was to shellfish - instant redness around the mouth just by licking it. It is so much harder to track his reactions compared to ds1 (clear reaction to dairy within 30min). Everything else seems to be a delayed or chronic low-grade reaction, and it's only desperation that drove me to doing the full elimination diet and the results were worth it.

We recently had a setback after someone gave him soya by mistake. It flared up and persisted for days. It got even worse later, and I realised it coincided with increased high-sugar fruits, homemade GF products with honey, and probiotics. I took out the fruits (been told by TMC doctor that he cannot take fruits but I was unconvinced earlier) and probiotics. Switched to non-fruit, low sugar recipes. His skin calmed down again within 3 days.

Basically if what you're doing is not giving you any results, I would encourage you to try a different tack. We did the same thing as you did in the past - giving him lots of fruits because he loves them, they are chemical/allergen free, and he needs the calories right? But he really didn't grow much at all while his skin continued to break out. After 2 weeks of radical diet change, we settled into our current diet based on meat protein, veg, and complex starches. He is now going through a growth spurt after not growing much at all the past 1.5 years and has lost his pallor. The difference could be seen within 2 months and we now have to buy new clothes and shoes for him even as we continue refining the diet.

good luck!
post #14 of 14
Thread Starter 
Thank you so much, deminc. I read your post several times before I decided what it was that made it really grab me: I've sort of lost hope that I can get him into my idea of what "normal" should be health wise. I can't believe that you actually were able to see such results... I am quite inspired.

Could we really do the same? I don't know. All 8? Plus corn, nightshades, fungi even? Lordy that is a lot. And it's farmer's market season. I am taking this post to heart, though.

Part of the problem is my DH- he is an MD and seemed completely reassured by the Peds GI. He has never gone along with the dietary changes I've had to make for O and myself-- there is still dairy in the house, and there was also gluten at the time of our elimination of it (making wonder how effective it was.) He's not really a believer in dietary change making much a difference, which is funny, as he will admit and readily attest to the improvements we saw in Ovi after taking dairy out of his system.

PS- Did you go off gluten, or just wheat?
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