Tell me about gluten intolerance....

[jennybean0722]

My son tested twice for gluten intolerance. We had already cut out alot of wheat products and his diahrrea improved (we only did "white" wheat products aka processed). We went completely wheat free for about 4 mo to see if his asthma would improve, it did not.

We went back on wheat about 1.5 months ago and although his diahrrea has not returned, his dipes are more mushy, he is more prone to diaper rashes and his mood is crabby from time to time, but not always. Now that he can communicate more (he is 2.5 yo) every other day or so (maybe twice a week?) he says he has a bo bo on his tummy.

It is HARD going totally gluten free. And it isn't like he is "allergic" to it, but obviously his stomach hurts and that isn't good. Has anyone gone gluten free for most foods, and then allow gluten as a "treat" every once in a while? I would think it wouldn't hurt him to have a piece of cake a birthday party or a piece of pizza at his school twice a year....

Experiences? Do you have any fave websites about gluten intolerance?

TIA!

[changingseasons]

He IS allergic to it. A food intolerance is simply a type of food allergy- it's a delayed-reaction allergy, as opposed to an immediate-reaction allergy.

Every time you consume an allergen it triggers inflammation in your body.

aaahh- DD just woke up. Be back later to finish my thoughts. But bottom line is that you need to remove it 100%- no cheating, or eating some here and there. There are plenty of replacements for gluten. No one has to suffer by being gluten free.

[tanyalynn]

My daughter has the classic gluten intolerance symptoms, things like the too-squishy poop, dark circles under her eyes, sleep issues, enlarged tonsils, stuff like that.

I am not willing to allow gluten as a treat. Honestly, I feel that I am giving her a real gift in identifying this food that is not healthful and nourishing for her, and I'm letting her grow up feeling good, being in touch with how her body feels and paying attention to what she needs in order to feel good. It did take a bit of work at the beginning to go from "we can't have gluten or dairy" to "we choose not to eat gluten or dairy."

We make pizza (our whole household is GF), we use this recipe and I think it's really tasty:
http://www.livingwithout.com/special-pizza.html

We use deeply caramelized onions on top instead of cheese (no dairy for us either). It's really good and it travels well.

I make a real effort to have baked treats when we're going to a situation in which other kids will have stuff, but if I don't, and that's happened a couple times, the kids know they'll get something special when they get home.

The thing is--I think it's less confusing to the kids to make this an absolute certainty, we do not consume gluten. I don't want this to feel frustrating or upsetting for them, so I really try to focus on it as "this is a food that does not agree with us, but we have lots of other tasty foods that we eat" and by truly feeling it myself, that it's an actively healthy choice we are making, I try to help them have positive feelings about it. My husband? He still feels deprived, but he tries to not talk like that in front of the kids.

It was hard at first--it was very hard. And it's been close to 2 years for us, and sometimes it's still frustrating to not have the cheap convenience foods that we used to eat. But the long-term benefits are worth it, I feel. One long-term bonus--I'm fairly certain my husband is gluten-intolerant, but his gut is (I suspect) really leaky and messed up with candida and just not good--but we _will_ get him feeling better, and being GF is a big step for that, and doing it for the kids is something he wouldn't even try to argue against.

[jennybean0722]

Now see, this is the problem I have. Your husband still has problems after TWO years? I always heard it only takes a two weeks to a month-ish for going gluten free to "work", or for one to "feel better". That didn't happen with us.

Before we found out DS was gluten intolerance, we ate only white bread etc. when we evacuated for a hurricane. Went to my aunt's house and that was all she had. His stools were firm that whole week. Got back home, ate "healthy whole grains" again and it went to mush and mucous again. Decided to go white and they went firm. Asked doctor/allergist if it might help his asthma to go completely wheat free and he said he's seen it happen before. So, we did it, but it didn't help his asthma. 4 mo. go by, and we decide to back to white bread b/c that is what worked before. Only now, it isn't.... I don't see why you can't have some, just not all the time.

And, I thought I've read MANY times here that an interolance is NOT the same thing as an allergy.... can someone teach me here??? We are at a loss and this is such a bi*ch...going wheat free.... And to be honest, family and friends who take care of him are NOT helping. I swear they think we are lying. And even when they try to go wheat free they always mess up. And then bam, I'm supposed to start all over again??? I'm not going to sequester my son from my family, especially when I need a break....

ARgh.
jb

[changingseasons]

Have you tried going dairy free too (to see if it helped his asthma)? I'm not sure that should should expect his asthma to just suddenly disappear when you cut gluten- the body (digestive system specifically) has a lot of damage to repair first. If he's been consuming gluten his whole life, it might take some time for the gut to heal. And each time you ingest an allergen, you trigger more of that damage. So if you eat a little here and there, you're slowing down (or stopping) the healing process.

I know it seems like living without gluten is hard, but really- it could be much worse. (Check my blog if you would like to see the foods that we are "living without.")

I would recommend not treating gluten as if it's a "treat" because that will make it so much harder for your son and will make him feel like he's missing out on something.

[tanyalynn]

It's taking my husband a long time to feel better for lots of reasons, most of which wouldn't apply to a kid. I've prioritized us in terms of me focusing on each person's health needs, I was #1, then my son, then my daughter, then my husband. Bummer for him. And his adrenals are really shot, they're in bad shape, and from what I can tell, severe adrenal problems overlap with leaky gut stuff somehow, and healing adrenals is slow (slower since he didn't have the normal symptoms, so it took a long time before we got him tested and went _this_ is the problem), and he's been eating gluten so long (my daughter's a carbon copy of him, so that's part of the reason I'm really fairly certain gluten is a problem for him) that his gut is a candida-y, leaky mess. Anyway, all this could've been done faster if he were #1 in line, but he wasn't. I really think kids respond faster, so I didn't bring it up to say you should be GF for at least 2 years before you decide, it was just that there's a side benny for us in this. And I think most adults would respond faster than my husband, so going GF as a family could yield happier, healthier parents (one or both) within a longer, but still reasonable timeframe (even I admit that 20 months isn't reasonable, but we're plugging away with things nevertheless).

Perhaps part of the problem is a fiber issue? Some folks here have had problems with higher fiber diets, they've had to reduce the fiber (momofmine is the one who comes to mind, she's using SCD to work on their gut stuff).

The intolerance vs allergy thing is really a matter of semantics. Since many doctors only recognize IgE reactions as allergies, IgG intolerances are sometimes dismissed, but some of the kids here with IgG intolerances react to much smaller amounts of their problematic foods than kids with IgE (not that I'd go playing around with that one as if it weren't serious). But there's frustration that the testing isn't as accurate as it could be, and really, watching a kid's response and problem-solving at home is the gold standard. Testing can be very helpful, but if a kid reacts to something, even if no test shows it's a problem, well, it's still a problem.

It's not starting all over again when there's an incidental exposure, at least I don't think so. Most people seem to find their symptoms abate in a much shorter time after they've taken all the allergens (in the broadest sense of the word) out.

For us, for the squishy-poop thing (for my daughter) we need to be GF, but I also need to supply reasonably large amounts of probiotic foods (we love kimchee) and then she gets pretty poop. So sometimes it's about taking foods out, and sometimes adding foods in, and sometimes both. Lots of trial and error in all this, I admit.

[kjbrown92]

You said he "tested twice for gluten intolerance" does that mean you had him tested and he has it? Or are your "trials", the "tests"? Has he been tested for food allergies? And have you done an elimination to see if there are any other foods that are triggering either the stomach issues or the asthma?

Personally, I don't think giving the person a "forbidden" food as a treat is a good idea. That's like giving a junkie a hit of heroin as a "treat". Simply not a good idea. For one, our body sometimes craves what we're intolerant to, so by giving them the food, you might be triggering a withdrawal again (which can take a few days to a few weeks to get back out of their system). And there are plenty of treats that they can have without gluten (and many other things) so that they can see that they're not suffering all the time. If he has tested as gluten intolerant, and your family is not supportive, then that's a problem. His health could be at stake. Especially if it is (or could be) an asthma trigger. Sometimes if there is a food intolerance, and you reduce their allergy load, then their allergy times are better (for instance my DS is allergic to mold and ragweek; 2 autumns ago, he had a perpetual cough and runny nose for about 2 months. In June, I removed a lot of food triggers from his diet. This autumn, he didn't have a runny nose or cough AT ALL, because his allergy load was so much less).

Ultimately it's up to you and the kind of lifestyle you want for you and your family. Your DS is too young to make the decision and actually by making it now for him, it'll be easier than later (my DS is 8yo).

[jennybean0722]

This is just SO hard for us b/c DS is an EXTREMELY picky eater. Like, the pickiest of the picky. Seriously, sometimes I am amazed when he goes for days just eating bananas and a few other assorted foods. I've read Dr. Bock's book a million times trying to motivate. Thank GOD he likes cheese. He would waste away to nothing if it wasn't for dairy. Except he hates milk. Yogurt he loves though. Any suggestions for other probiotics?

We are going to try to avoid this (gluten), but like any other allergy, you do what you can to avoid it, knowing that you may come in contact with it. If you had an allergy to grasses, would you just not go outside again? I don't think so I won't call his gluten outings "treats". That's just what I call it in my mind. We would just try to avoid as much as possible, bring our food along, and if he isn't with us and happens to get a taste of cake, we won't make a biggie... He doesn't even really like cake anyway...only the icing. Which of course he licks off and probably gets a few molecules of gluten. But I don't think that will cause chaos.

When we went gluten free the first time, he lost a good bit of weight. Let me back up. When we switched to white breads, he GAINED weight. Got up to 30 lbs! Then we went wheat free. He lost FIVE whole pounds. In like, one month. We tried to get him to gain and it didn't work. I even resorted to putting coconut oil in his yogurt to try to beef him up. We put him back on white and he has gained weight, but I couldn't tell you how much he is now. We are just SO restricted with GF that he loses weight which I don't think is good. He is already SO SKINNY, his dad and I are both tall and fairly slim btw.

Oh the tests were #1 celiac disease (showed a sens. to gluten) and #2 RAST sens. to gluten (I can't rem. if it was igg or ige tho)

THX for helping me with this. I am just getting to my whits end here....

[kjbrown92]

so he tested positive to celiac and you're letting him have gluten?
my kids are picky too, and they're avoiding gluten and dairy and corn and a whole host of other things. Sometimes we crave the foods that we shouldn't be having. And somewhere on here there was a thing about gaining weight when we're eating the things we're not supposed to because it's the body's way of diluting the toxin.

[changingseasons]

There is no reason for him to lose weight while gluten free, unless you're replacing the gluten with another food that he is intolerant to, or not getting enough calories in with other foods. I'm sure that you saw Dr. Bock's mutiple references to the benefits of a GFCF diet, even in relation to asthma, right? I really would recommend going dairy free for a while (3 weeks minimum) if you haven't already tried.

I guess I need help understanding your question. Are you asking for help with living gluten free? Or are you asking if it's ok for you to not be 100% gluten free when you know it's a problem for your son? I don't think there's anyone in this forum that would think that's a good idea. I'm trying to be gentle with my responses, because I realize that I'm tired and grouchy... but seriously- if gluten is all that you have to avoid, you should consider yourself lucky. And I don't mean to imply that you're not allowed to vent about what a pita it is- that's what we're here for.

Probiotics-
Storebought yogurt is not a good source of probiotics. Better sources would be homemade yogurt, dairy kefir, water kefir, fermented veggies (I'm sure Pat [the whole food probiotic pusher ] will weigh in soon with more ideas.) Or probiotics in capsule form, but again, not as good as natural food sources.

[kjbrown92]

There's also good enzymes in saurkraut. And we make coconut milk yogurt here for probiotics (I also have a capsule form that I empty into smoothies for the kids).

I am grouchy, I'll admit. So I'm sorry if I sounded harsh before.

[LBMarie9]

good thread..I'll keep watching.

wow I think I was asking these same questions when I first came around here---kept having mistakes becuase it was too hard---I think i'm finally coming around to seeing how important is it--and no I won't let my son have the cakes or dairy at the birthdya parties--for HIS health.

if he is positive for celiac disease--WOW do drs not let patients know how serious that really is? the damage can do some BAD stuff to their bodies.

that said---I'm still a newbie and am going to read on to learn more!

[Missy]

If your child has celiac, you don't have a choice. You don't mess around with it, period. It's not like an allergy to grass, any more than my son's anaphylactic allergies can be compared to a grass allergy. You cannot remove grass from the world, but you can certainly remove a life-threatening food from a child's diet. If your child has celiac, those exposures to gluten tear up his tummy. Those exposures can lead to long-term, severe, health issues. It can lead to intolerance of other foods, unrelated to gluten, because he can't handle them; it can lead to weight loss and immune issues because he can't absorb the nutrients he needs. It's not worth it. You are literally risking your child's health and life.

If your child has an allergy, each exposure, no matter how small, keeps the immune system on hyper-alert. Again, not worth it.

It is hard, but if my son has so far gotten through over six years of being free of gluten, dairy, nuts, peanuts, eggs, soy, bananas, corn, apples, etc...etc..., you can do this.

[HQ Fishkiller]

Hey mama google GIG (Gluten Intolerance Group) and it will have information about GF resources in your area. As far as GF food goes you can get GF baking mixes and make him his own GF pizzas, cakes and cookies. I make and freeze GF cupcakes for DD to take with her to parties and she loves it. She didn't have that much of a basis for comparison as far as gluten goes I only gave it to her for a month before I figured out she was having problems with gluten. There is lots and lots of GF options out there as far as breads go and yes to me they taste a little funny and are a bit more expensive but that's ok I would much rather have her be GF free then have her be in pain because she has diarrhea and diaper rash and eczema from the gluten.

[lil_miss_understood]

Wheat free and gluten free are not the same thing.
That's all I'm going to say since I have no tact to begin with and even less when I'm annoyed, besides a big : to pps.

ETA: Oh yeah, and thanks for the pizza crust recipe, Tanya.

Just one other thing. Celiac-mediated gluten intolerance is not on the same "level" so to speak as "simple" gluten intolerance. It is an autoimmune disorder and choosing not to treat it opens your child up to a whole host of other autoimmune disorders. If you knew that giving your child a cupcake meant that he would end up having to take insulin and/or thyroid pills for the rest of his life, would you still give him the cupcake?

[Chinese Pistache]

Agreeing with everyone. OP, celiac and gluten intolerance are serious. The public and many doctors do not recognize how damaging it can be, so I can see why you might think it's okay to cheat. Here are some links about it:

http://www.livingwithout.com/2009/decjan09_celiac.html
http://www.livingwithout.com/2007/07all_in_head.html
http://www.livingwithout.com/2007/07pretender.html

[isaoma]

[QUOTE=jennybean0722;13294592]It is HARD going totally gluten free. And it isn't like he is "allergic" to it, but obviously his stomach hurts and that isn't good. Has anyone gone gluten free for most foods, and then allow gluten as a "treat" every once in a while? I would think it wouldn't hurt him to have a piece of cake a birthday party or a piece of pizza at his school twice a year..../QUOTE]

It is HARD to realize that your child might have a perfectly normal day to day existence when it comes to food choices. Dd was diagnosed with a wheat allergy last year (18 months). I often wished she wasn't allergic to wheat so she can have a piece of bday cake or a christmas cookie too.

BUT, what I try to realize is that I am SAVING her from a life-time of pain brought on by food intolerances. I am trying to make sure that she doesn't develop chronic inflammatory diseases that can silently wreck havoc on her tiny growing body. I am trying to make sure that she is the healthiest person she can grow up to be. And, when I think about my daughter's food allergies in this light, missing a piece of cake doesn't seem so, so bad.

If your son was diagnosed with celiacs, did your doctor have any additional tests recommended for your ds? Are you working with a gastroinerologist or a dietician? Sometimes haven't professional support makes the transition easier.

FWIW, dd had french toast this morning at loved it (a local store make gluten -free rice flour bread). I'm not sure where you live, but many grocery stores are expanding gluten free options, and health food stores might even carry gluten free baked goods.

[p1gg1e]

There are gluten free breads you can make or buy. there is a replacement for almost everything. Is your DH completely gluten free even trace? its in allot of things you would not think. is there a dietitian you can speak to in your area for either your DH or both of them?

[lil_miss_understood]

I wanted to tell you, also, that the post I wrote you here still holds true. You should go gluten and *casein* free before deciding that it's not helping. There are some people with Celiac disease whose bodies seem to recognize the casein protein as gluten. There's a blogger who's an engineer with Celiac disease and she explores it on her blog (I can't think of her name at the moment).
It's also incredibly important with Celiac disease that you be *very* careful about cross contamination. I hate to tell you, but it could simply be that he is reacting to residual gluten from plastic and wooden utensils, plastic and wooden cutting boards, non-stick cookware, cast-iron cookware, plastic plates... You get the idea. These items are porous and the gluten gets into them and cannot be washed out. If you're using the same toaster for gf and regular toast, he could also be reacting from that.

[Phoenix_Rising]

Jenny, it is hard. We found out last May that we should cut out gluten from DS' diet and in November that he is in fact allergic. We have been GF since last May. I agree with the previous posters who have said that it is best for your child to be completely GF. I also agree with the thought that you might try going casein free before deciding that a GF diet is not helping. We had an allergy test (IgG) done for DS and he came up as allergic to gluten, dairy, eggs, soy, peanuts, oranges, grapefruit, and something else I am forgetting at the moment (I'm running really low on sleep and am sick, sorry). Many of the people in this forum have multiple food allergies they deal with (and cut out of their diets). again, it is not easy.
The good news is that there *are* replacement foods. GF bread/baked products abound, or you can make your own if you are so inclined.

One thing that was extremely helpful to me in understanding the importance of going GF/CF and the issue of cross-contamination was to call Enterolab. They are fabulous people there, whether or not you choose to test through them.

You CAN do this, mama.