GLUTEN, GROWTH, AND THE GUT

[calynde]

Hey mamas,

I could really use your wisdom here. This is long.

Some background...

DS1 has basically been growing poorly since he was a baby. He was born fairly small at term (6 lbs or so) and followed a growth curve around the 3rd percentile. There would be little spurts of growth and then nothing for ages. He is 8 years old now. Over the years, we consulted lactation consultants, doctors...followed various nutritional plans. Nothing ever changed. I was always worried about it, but although he was super small, he always followed his curve more or less, so nobody was ever *really* concerned. So now at his growth check up the other day he has clearly fallen off his curve. What makes this particularly interesting, is that he eats like a horse. We are mainly organic, whole foods at home...green smoothies every morning, etc. He eats A LOT. And he hasn't really gained anything in ages. My younger DS, who will soon be 3 and has always been a normal size/weight has also fallen off his curve and we have struggled with weird poo with him since birth as well. We took him off dairy and that has helped, but he has essentially never had a solid poo, seems to be having also some tooth enamel issues and as I said, is also no longer gaining. So there is "something" in their diet that isn't working...I don't know what else it could be besides gluten that would cause such growth issues in DS1 and now that plus other symptoms in his little brother. I should also mention that it was never obvious to us this could be an issue, as DS1 has no other obvious symptoms of gluten intolerance...no noticeable reaction, normal digestion, etc.

We did a 3 month gluten free trial with him last winter and there was no change in the first month, and then in the following 2 months he gained 6 pounds and just over an inch, total. This is phenomenal in that if you compare with the rest of the year since we stopped that trial, he hasn't gained even barely a half a pound. 

So, he will be tested for gluten intolerance next week. I wish I knew exactly which test, but our doctor appointments are in German and those details often slip by me. I do know it is a more sensitive test than the typical gluten allergy blood test. This is an alternative medical doctor, and he feels it is fairly reliable.

I sincerely hope it is gluten! I just really, really need it to be that "simple". My question is this, if the test comes back positive, what steps can we take to help heal his gut from the damage other than eliminating gluten (which we will likely do regardless of the test result, since it seemed to help him either way). Probiotics? Anything? I have no idea where to start. Any tips you have for helping us to optimally heal his gut and support his weight gain/growth would be very much appreciated!

Second, if for some reason the test results are negative...can you think of anything else in the diet or otherwise that could cause growth delays the way gluten can? I feel like I need a plan B...a different tree to bark up if this doesn't make things clear. I want to be prepared for that doctor visit, if it should come to that. He is not a sickly child, very happy, rosy cheeks, seldom ill. I just don't feel intuitively it could be anything super serious, especially as his brother seems to be having issues, too. But maybe I'm overlooking something?

By the way, I have a lot of the signs of gluten intolerance, too...but never put 2 and 2 together. Just thought I had a "sensitive stomach". Sigh.

thanks so much!!!!!

[changingseasons]

Originally Posted by calynde 

We did a 3 month gluten free trial with him last winter and there was no change in the first month, and then in the following 2 months he gained 6 pounds and just over an inch, total. This is phenomenal in that if you compare with the rest of the year since we stopped that trial, he hasn't gained even barely a half a pound. 

With these kind of drastic results, I would say you don't even need to do the test. I would be pretty positive that gluten is an issue for him. With a gluten intolerance (and even more with celiac disease), the gut is damaged by eating gluten, so your body can't absorb nutrients from your food, resulting in slow growth. When you take gluten out and let the gut heal (which sounds like what was happening in the first month), then suddenly your body is getting nutrients and you'll see that kind of sudden growth.

The only thing to consider is that if you want to do a celiac test (sometimes an official diagnosis can be helpful), you do need to do it while he's eating gluten. But otherwise, I would just take everyone off gluten and see what happens!

[calynde]

I know...the results DID seem drastic, and yet...socially it wasn't easy on him not "knowing" for sure if it was 100% necessary. We live in Switzerland where "gluten free" is still largely off everyone's radar, and there are a lot less products/options than there are in the US. The test is only a blood draw, and if it tells us anything at all, I think it would help him understand the need to commit to this a bit more. Not to mention how much easier it would make things with my in laws! 

[scsigrl]

As Changingseasons said, your child needs to be eating gluten daily for an extended period of time for the test to be accurate.  Something like 2 slices of bread DAILY for a a minimum of 6 weeks and that time is debatable.

Also, I am not sure if things are the same in Europe (though it typically is better there than here but not from what you say in Switzerland) but to get an official diagnosis your child would have to have a biopsy as well as that's the "gold standard" for diagnosis.  

I agree that if you want a diagnosis for compliance sake would be easier to do now.  

It's a big decision, good luck.

[calynde]

Thanks.

We will not be doing a biopsy. Our doctor didn't think that was necessary at all. I have no idea if the tests offered here are exactly the same as in the US, but he said he believes this particular blood test to be fairly accurate. It is not the typical test, as we have to pay for it out of pocket...it is offered through a private lab.
I will try to find out exactly what it's called at the next appointment. DS has been eating gluten for a year now, daily. The trial we did was last winter, beginning of 2010...so that shouldn't interfere with the accuracy. We will go off it regardless of the results, but having any kind of medical evidence would surely help him understand the importance of giving it up permanently.

So once we get rid of the gluten, what can i give him to facilitate healing of his intestines? Is it wise to start probiotics or something right away, or should the lining be given time to heal first? I also read somewhere about glutamine ? or something...better go re-read that. Very confusing!

[scsigrl]

I *though* that in Europe they didn't routinely do the biopsy but I wasn't sure. I think the US is headed that way but it'll take a few years (as everything does).  The big gun US researched said they hope the blood tests accuracy will be 100% within 4-5 years.  While I hate it for you, I totally understand wanting that "proof".  Others think I am crazy while I KNOW my son has allergies and Celiac.  It isn't that I don't believe it.  I see him screaming in pain all night with accidental exposure.  But others seem to need it.  Here also, it helps for things with school when we need special considerations.

As for healing, when my son went GF I was hoping for changes ASAP.  After about 6 weeks I still didn't feel things were where they should be (I know it wasn't much time and healing can take a while, but I am a Mom and wanted my baby to feel better!)  We started a probiotic and within days he had regular BM's for the first time in his 4 year life!  Totally difference!  

Again, good luck!  As you know it can be a challenge but worth it to see the health of your child return to where it should be!

[laohaire]

I don't know much, but I understand that with gluten-related gut damage, it can be helpful to remove dairy, at least for a time, as well.

[calynde]

Ok, then i guess we will start on the probiotics right away...it probably can't hurt. I just wondered if that even makes sense to do before there is some healing.

He is also being tested for dairy intolerance. He barely eats any as it is, since DS2 and I can't have it...so we will for sure leave it out for at least the first few months. Instinctually i am feeling pulled to give him a sort of cleansing diet initially, including more fresh green juices etc, (which we already include in our diet) moving gradually into a more rebuilding phase, if that makes sense. It was interesting, during our gluten free trial...he spent the first month being slightly more picky about his food, and then the following couple of months he started to eat a larger quantity than ever before, and more diversity in what he ate. It really made me realize how addictive and filling the gluten foods are and how little room they seem to leave for more nutritious things.

Testing in a few days! Eek!

[calynde]

bumping this to update that he has indeed tested positive for gluten intolerance. 

so as of today, we are gluten-free, dairy-free (at least for a time), and ready to heal! we are adding in more green juices and probiotics, as well. I have also started a GF journal, to record our progress with his growth, etc. just for my own benefit. 

gosh, i had the opportunity to test him for this when he was 18 months and I didn't take it...i had no idea about any of this stuff back then!!! Now he's 8 and I have been giving him damaging food for all this time...sigh.

any extra gut healing tips are very welcome. we are both happy to have answers and totally overwhelmed at the same time!

[Koalamom]

Good to hear you got your answers! Cutting out gluten and dairy was the best thing we ever did and my son (almost 2) was super underweight and now he is gaining without the bread and cheese. You sound like you are on the right track with the probiotics. Good luck!