anyone know the biology of gluten intolerance WRT infant reflux?

[wednesday]

I'm really curious about why DD has the reaction she does. Background: she's 7 months old and I have been fully GFCF for the last 3 months. I was mostly dairy-free from birth (anticipated a dairy issue since my son couldn't handle it) but the gluten intolerance was a surprise. I went on a total elimination diet because she was throwing up all day and pretty much flatlined on growth from 2 to 4 months. After a few weeks I challenged different foods and we narrowed it down to dairy and gluten. Oh and egg exposure seems to provoke an eczema-type reaction around her mouth and cheeks so I avoid that too.

She is now 7 months and doing really great. I on the other hand am starving all the time and only have about 10 more pounds I can lose before my own weight begins to be a serious issue. But I can hang in there for now. I'm hoping to get her on more solids soon but it's going slow. She's extremely interested until she tastes each new thing and then she's like, uh, never mind.

Anyway...she seems to be extremely sensitive to gluten exposure. I've messed up a few times, also challenged a few foods just to be sure. Like soy sauce, I had some sushi one day with non-gluten-free soy sauce and she spit up the rest of the day. Not as huge a volume as it was in the past, but still an amount of concern and I don't want any more damage to the esophagal sphincter, you know? I think/hope it is mostly healed up by now. What I have found is that within an hour of my consuming gluten, the next time I feed her she has significant spitting up within about ten minutes. DH is like "how can your body metabolize it that fast and cause her to have a reaction?" Honestly I have no idea but it's clear she reacts to it. We have also found that products that don't contain wheat/gluten but say on the package they are processed in a facility that processes wheat, cause her to react. So obviously she is sensitive to the tiniest traces. DH doesn't like disbelieve it but we both want to understand why it happens.

Does anyone know? Our pediatricians are useless, if I talk about this at all with them they think I'm and like setting her up for malnutrition. We live in a small town and I have asked around tons of times for better HCPs for my kids and really got nowhere. They're all pretty ignorant here unfortunately.

[changingseasons]

I have a bunch of thoughts...

• With that type of sensitivity, I would look into celiac testing for both of you. I think there's a type of testing (hopefully someone else will chime in here) that you can do to check for celiac markers, rather than scoping her.
• Not ruling out the gluten issue, but are you sure she's not soy intolerant as well? Many (if not most) kids that are dairy allergic are also soy intolerant.
• Don't rush the solids. Many babes with food allergies know instinctively what is good/bad for them. Also, you want to give her gut a chance to mature and heal before putting in a lot of new foods. Some allergists recommend waiting until 12 months to start solids for atopic babes. Of course, all babes are different, and it depends on your comfort level and your baby's cues for readiness.
• If your babe is reacting through your breastmilk (and especially that quickly), that means that YOU have a leaky gut. And possible some food intolerances of your own (even if you're not showing obvious symptoms.) While avoiding allergens, I would work on gut healing with things like vitamin C, bone broth, clo, etc. There's a sticky in Health & Healing with more stuff.
• You shouldn't be losing weight rapidly. One reason being that it will probably excacerbate the situation by flooding your babe with toxins from your body. Also, you're really not avoiding that many foods, so you really have a lot of food choices!. There is a recipe sticky at the top of the forum for meal ideas. But you need to make sure that you are eating a lot of what you can have, and getting plenty of calories, fats, carbs.

Check out my blog too (link in sig.) I've compiled a lot of good info there. Mostly because I've had the same experience with HCPs- not many know anything about food allergies/intolerances in babies.

[wednesday]

Hey, thanks for your response! To answer a few things: no, my kids don't seem to react to soy. Thank goodness. It does make things a little easier to be able to have that. About my weight loss, it's been a pound or two per week. I think that's not too bad? I try to eat, I mean honestly I'm hungry all the time, but I mostly don't feel very satisfied. :

Why do you suggest celiac testing? If we already know she can't tolerate gluten, how is the test helpful?

Thanks!

[kjbrown92]

There is plenty to eat that is dairy/gluten/egg free, and you should be eating a lot of it, for the reasons already mentioned here. You do have to make a lot of stuff from scratch, but there are lots of choices, and new recipes every day (I made chocolate fondue last night and dipped fruit in it -- I'm sure that had plenty of calories ).

Celiac testing is helpful because it's genetic, so if one has it, others in the family can get tested. And also, you'll know if it's more than an intolerance that might be outgrown. You can get the genetic test without having to go back on gluten (the blood test and the scope is only accurate, they say, if you're eating gluten before the test).

If we knew the "why", we'd probably all be rich. Some of it has to do with the mother's compromised gut. Some say people have more allergies because of the "cleaner" environment. Some say it's because of vaccines. There are all sorts of theories. Some kids are more sensitive than others though. And who knows why they react to one food and not another.

[kortner]

Originally Posted by changingseasons

I have a bunch of thoughts...

• With that type of sensitivity, I would look into celiac testing for both of you. I think there's a type of testing (hopefully someone else will chime in here) that you can do to check for celiac markers, rather than scoping her.
• Not ruling out the gluten issue, but are you sure she's not soy intolerant as well? Many (if not most) kids that are dairy allergic are also soy intolerant.
• Don't rush the solids. Many babes with food allergies know instinctively what is good/bad for them. Also, you want to give her gut a chance to mature and heal before putting in a lot of new foods. Some allergists recommend waiting until 12 months to start solids for atopic babes. Of course, all babes are different, and it depends on your comfort level and your baby's cues for readiness.
• If your babe is reacting through your breastmilk (and especially that quickly), that means that YOU have a leaky gut. And possible some food intolerances of your own (even if you're not showing obvious symptoms.) While avoiding allergens, I would work on gut healing with things like vitamin C, bone broth, clo, etc. There's a sticky in Health & Healing with more stuff.
• You shouldn't be losing weight rapidly. One reason being that it will probably excacerbate the situation by flooding your babe with toxins from your body. Also, you're really not avoiding that many foods, so you really have a lot of food choices!. There is a recipe sticky at the top of the forum for meal ideas. But you need to make sure that you are eating a lot of what you can have, and getting plenty of calories, fats, carbs.

Check out my blog too (link in sig.) I've compiled a lot of good info there. Mostly because I've had the same experience with HCPs- not many know anything about food allergies/intolerances in babies.

:

This is a great list!!!

The celiac testing is at enterolab.com. I am hoping to get tested so we can know if it's a life long issue or just a gut healing issue.

I definitely felt hungry all the time too until recently. I think withdrawal from gluten can do that. I wish I had something to back it up with other than my experience, but I have read that undigested gluten proteins cause an 'opiod' effect in the brain which you get used to and then crave. I have also heard this from many gluten intolerant people, who said they needed to give themselves lots of gluten free muffins and other 'replacements' when they first started a gluten free diet, this helped them feel better. Then they got used to it. Some of them get sick just by walking by a bakery, it is that serious. I would look into getting some clay to take (pascalite.com) for accidental gluten exposure - I hear it can work wonders.

Anyway, ditto what kjbrown said about making sure you get to eat enough! Ask if you need help or ideas!!!

[tanyalynn]

re: not feeling satisfied, have you considered (or tried) playing around with your fat and/or protein intake? At times when my body has been stressed, I've really needed a lot of fat, a lot more than I ever would've guessed. The easiest ways I've found to add it in (and I'm able to change how much I eat and let the rest of the family decide what they need too) have been high-fat hummus and hot cocoa made with coconut milk instead of cow's milk.

When I cut out gluten and dairy, I lost weight quite rapidly despite eating as much as I felt like (on the high-fat diet I mentioned above), and I think just the removal of those stressors. I plateaued a bit higher than what I think a healthy weight would be for me, so maybe something like that is happening with you as well.

I can't answer your actual question, I don't know much about reflux, our manifestations of our food intolerances (we're also gfcf, and I'm trying to figure out now if my son can tolerate cashews and chocolate, which have been removed for a bit over a year now) are/were different. In general, a lot of the people here have some mix of: mom's leaky gut, child's leaky gut, toxic load issues (our family's biggest issue), detoxification issues (not necessarily long-term ones, though ours are long-term), gut imbalances, nutritional deficits. I'm sure I left out a few things, and many of those can overlap.

[mellowjello]

I am posting a random idea in case someone else comes along to improve on it or debunk it.... an MD/ND (had both degrees) told me that reflux is caused by "too much heat" in the liver. So for us, even though I usually do better with more scientific explanations that that, DD's reflux makes sense because I know we have toxic load issues among other things, so hence liver working overtime (or not working very well). But as for the gluten, I just googled gluten and liver and got a couple of interesting things re: gluten and liver disease (mostly related to celiac). Not that your LO's issues would be so severe, since she is so young, but maybe good validation that you are doing the right thing by avoiding gluten exposure.

http://www.medscape.com/viewarticle/431589

http://www.celiac.com/articles/1010/...ron/Page1.html

[wednesday]

Thanks for all the responses! I do the best I can with the eating -- I'm just not a food-oriented person I guess.

My question about the biology was not meant as "why is DD sensitive" but more about what is happening in her body. Here's where I get confused. She was diagnosed with reflux...but I think it is more that she is vomiting. Isn't there a difference? Like reflux is a "wet burp" making it past a weak esophageal sphincter. Vomiting is actually a muscle spasm that is triggered in the brain (anti-emetic drugs work by sedation, I understand). The volume and pressure of what was coming out of DD, before my dietary change, seemed much more like vomiting than "burping". My other thought is we kept being told reflux is worst at night when the baby is lying down, but that was not our experience. DD did best with her night-time feeds, I think because in her sleepy state her stomach stayed settled rather than ejecting it all back out.

Now she's 7 months, has fantastic trunk control, has been sitting independently for several months and is now pulling up/cruising/crawling. She'll go several days keeping everything down, then I eat something questionable and up comes a LARGE volume of milk again. Not just a little bit, like you'd expect for a baby growing out of reflux. So again...I think it's vomiting.

Am I wrong and it doesn't matter, or is this actually significant?

I looked at the enterolabs website but I feel like I don't need to spend money to find out DD (and I) are sensitive to gluten. Clearly we both are. I noticed they also said as much on their FAQ:

Sometimes people experience dramatic improvement of symptoms and feeling of well-being after beginning a gluten-free diet. If the improvement to health was dramatic following removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test).

[mellowjello]

What you describe does sound like vomiting and not reflux to me, just with my limited experience. It seems like that would matter. Just for myself, and I've been struggling with all kinds of gut/sensitivity issues, but at my worst I ate some salmon and got incredibly nauseas and had dry heaves. I think my body was trying to tell me something (I was also tasting metal in my mouth all the time). So is it possible that it is her body's reaction saying "NO, WHATEVER YOU DO, DONT EAT THIS!!!" ???

[txtarheel]

You're description of your DD's vomiting is exactly like my DS's. He's 10 months and the exact same way. We've got a much longer list of foods that trigger his vomiting and it's mostly down to spitting up now, but he vomits when we change his position. From lying to sitting or bending too much when in a sitting position. He's also gotten a lot of help and relief from our chiropractor who has been treating him for a hiatal hernia. It sounds like many of your DD's symptoms could be from that as well. You might want to check it out.

Where in NC are you? I've got a great chiro in Apex. I'm tired of the Drs. talking about his "reflux" though!

[wednesday]

Originally Posted by mellowjello

So is it possible that it is her body's reaction saying "NO, WHATEVER YOU DO, DONT EAT THIS!!!" ???

Yeah, that is really my impression.

Originally Posted by txtarheel

Where in NC are you? I've got a great chiro in Apex. I'm tired of the Drs. talking about his "reflux" though!

I'm in western NC, but I do have a great chiro who also sees babies. I haven't taken DD but have been thinking about it. We're not insured at the moment but I think I'm going to just take her in anyway. We're supposed to be getting medicaid, I don't know if that covers chiro?

[mellowjello]

I second the vote for chiro. But be sure s/he is specially trained to work on infants/children. Helped DD a ton, especially for hiatial hernia. If you can swing it, I would recommend it.