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Frustrated And Confused


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#1 cait

 
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Posted 17 February 2013 - 04:35 AM

Last spring we figured out that my son is gluten intolerant-- or at least we think we did.

As an infant he had reflux that lasted longer than the typical infant reflux. As a baby/toddler, we wondered if he had a sensitivity to wheat because of face rash after eating bagels a few times and some nasty diaper issues. We never clearly figured out what was going on, but I wonder now if the fact that he was still nursing complicated our diagnostic process (we never totally got him free of it because some was coming in through milk). He became a very picky eater, living primarily on carbs (and, yes, wheat). We figured out my gluten issues when he was about 2.5 and eventually eliminated gluten from our house entirely so that I could avoid crumbs from the kids. In the months that followed gluten elimination in the household, the kids ate gluten outside of the house at school, playdates, dinners out, etc. My son also began to experience increasing stomach problems. Alternating C&D. Calls from his school that he was crying in the bathroom. Going through all of his changes of clothes in one day even though he had been pretty reliably potty trained previously. Winter into spring were the worst (which actually corresponds to decreased gluten intake, so makes sense in an increased sensitivity sort of way). He was also having erratic behavior issues at school. We finally removed all outside of the house sources of gluten and the stomach problems resolved and his behavior regulated. We've kept him very strictly off gluten since then.

The issue is, since he was pretty low gluten by the time we figured out that there was an issue, we couldn't test him for celiac. My partner is the bio parent, so he does not have my family history of celiac (though we don't know about the other half of his genetics). My mother-in-law thinks that we're crazy and horribly restrictive for keeping him off of it, and we have no test results to back up our observations. So when she was watching the kids on Friday, she let each of them have a gluten cookie at her friend's house. Apparently her fear of being socially inappropriate won out over our request that she keep him gluten-free. To further complicate the issue, he hasn't had a reaction. So now I'm totally baffled, as well as furious and concerned about future implications with her. In some ways, great! We know he's not super sensitive. Maybe we don't have to supply gluten-free playdough or worry as much about his classroom. On the other hand, if he does have celiac (possibly unlikely, but we just don't know and can't know), even if he's not reacting those exposures are bad. And then the MIL factor...but that's up to us to sort out. Supporting our parenting decisions is an ongoing issue and clearly we have farther to go than we realized. I'm more baffled about how to proceed with him. Any wisdom?

Complicating all of this is that we took both kids off of dairy before figuring out his gluten issues. We were having winters full of congestion and multiple rounds of antibiotics for each of them for ear/sinus (both children) infections and pneumonia (him, not her). The last two winters have been much better. In fact he hasn't had a round of antibiotics since last spring (despite a few nasty colds), and my daughter has had only one. This could just be related to getting older and luck, so we're starting to test dairy, even though part of me doesn't want to mess with them both being generally healthier. But I don't want to be unnecessarily restrictive either.

Leaving MIL issues out of it, how do we sort all of this out?
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Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

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#2 nvsmom

 
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Posted 17 February 2013 - 03:20 PM

People don't always react horribly to gluten when they have a gluten intolance. I am fairly confident that I've had celiac my entire life but I was ill all of the time; there were periods where I had a lot of stomach pain and bloating, along with headaches, and there were other times where I had no or minimal discomfort (or I just have a really bad memory of my teens and early twenties... I don't think that's it though LOL). And I can't remember a difference between my reactions when i had a speck of gluten versus a giant cinnamon bun. He could have a gluten intolerance and he either did not react that time, or he had a reaction that you didn't recognize as being a result of gluten intolerant (headache, rash, sleepy, grumpy, constipated, mouth sores, etc).

1. As for your options, I can really only see two (for someone who appears to have a gluten intolerance):1.Reintroduce gluten into his diet for about 6 weeks at a rate of a couple of slices of bread per day, and then have a celiac panel run, and an endoscopic biopsy if that is wanted or required. the celiac panel is:
  • ttg IgA and ttg IgG
  • EMA IgA
  • DGP IgA and IgG
  • total serum IgA
  • AGA IgA and IgG (older tests)
2. Continue eating gluten-free and assume he is celiac or Non-celiac Gluten Intolerant (NCGI). Eliminate all sources of gluten if you go this route because if he is a celiac, miniscule amounts of gluten can harm him. Be vigilant about keeping him gluten-free; treat it like a life threatening allergy.

I would continue to keep the kids dairy free if they are doing better on that diet. Many celiacs have issues with dairy and find they do better with out it.

My kids tested negative for celiac but I made them gluten-free anyways because I suspected problems and I'm glad I did. My oldest and youngest have had great health gains since going gluten-free (my oldest is milk free too). Between them I have noticed less stomach aches, no more headaches, improved mood, better concentration and control, sleeping a bit better, less aches and pains, less bm's, and all three of my kids have "coincidentally" had quite a growth spurt since going gluten-free. The could be one of the 25% who have false negative tests for celiac or they could be NCGI but either way they feel better. :)

Besides, going gluten-free is really not that restrictive. It's only three foods: wheat, barley, and rye, non of which are even remotely needed for our survival or even for good health. It's increasingly becoming clearer that people who avoid grains are generally healthier than the average Joe. My son is tree nut free due to allergies; that includes cashews, walnuts, pecans, almonds, pistachios, pine nuts, hazelnuts, and a few more ... that's way more foods to restrict than just those "glutenous" three. Or there are groups who avoid beef or pork, and eating kosher is a bit tricky... restricting foods is not uncommon..... Sorry, that rant was for your MIL. ;)

Really though, cutting gluten isn't restrictive unless you eat out a lot. You just need to learn a new way to cook and bake, and relearn some safe brands of prepackaged convenience foods, which is getting much easier now that going gluten-free has become so "trendy".

Good luck with your decision. :)
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#3 cait

 
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Posted 19 February 2013 - 04:02 PM

We haven't opted for a gluten challenge and testing because trying to keep me from cross contamination while doing a challenge seemed overwhelming (that's the reason we moved to a gluten-free home in the first place).  Also, I just can't imagine making him miserable for that long, knowing that many people get inaccurate results after gluten challenges anyway.  I'm wondering if there's any point in having the genetic testing done on him.  I know it doesn't give a definite answer, but it might tell us a little more about the odds of him developing celiac.  Or maybe that's just my wishful thinking.

 

While he didn't have as intense a reaction as I thought he might, given how miserable he was before going gluten-free, he did definitely react-- just delayed.  TIred and moody, constipation.  I don't know that my MIL will ever understand, but at least we were able to tell her that it did affect him.

 

I'm totally happy to keep them on any diet that keeps them happy and healthy.  I really don't get why people get all bent out of shape about it and how horrible it is for kids.  Yes, there are times when I miss things.  Yes, there are times when it's inconvenient.  Yes, occasionally it's hard for the kids.  But for the most part, it's really not a life of horrible deprivation.  We eat pretty well and the kids are pretty happy with what we eat.  (well, my daughter is.  my son doesn't like food in general, but it has nothing to do with the lack of gluten or dairy).

 

Thanks for your thoughts!


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Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

#4 Worried mommy

 
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Posted 19 February 2013 - 07:20 PM

My DD tested negative for Celiac and biopsy came back negative. Doctor told us to try gluten-free and so far it has helped her a lot. Before we stared gluten-free we ordered a bunch of Girl Scout cookies and the other day they came in she was sad that she wouldn't be able to eat any, and literally stared at them for a long time reading all the ingredients hoping that one would be ok to eat. I explained to her that if she ate it she would feel the pain again, and that it was her decision. Now I just want to state that she is all for the gluten-free diet because she has noticed a big difference in how she feels and has never given me a hard time about starting gluten-free. Her decision was to go and try a cookie she ended up having two thin mints and Nothing happened. No stomach pains, no diareha ...nothing. I was lost. Still am. She hasn't had any more since then but not to sure what happened.
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#5 jacksonsmummy

 
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Posted 02 April 2013 - 06:24 PM

Our Dr explained that keeping children on a gluten-free diet when they don't need one is not the best idea. Most of out " fortified" foods are the breads and cereals. Our trace vitamins and minerals are in those foods . Keeping kids G F but not deficient in those vitamins and minerals is a careful balancing act that should always be done under professional supervision. Another reason she said was it can give children a sense that they are unwell or some how in danger of illness and crest undue anxiety as they grow and socialize. I was concerned about putting my son back on gluten after his test came back positive because t makes him so sick! After listening to the Dr's knowing for sure really is best. If my son is Celiac he will need certain types of Cancer screening and they will be on the look out for related complications as he grows. I would for sure make certain that they need that diet. MIL was wrong to do what she did, they are your children!
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#6 Ollie's Mom

 
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Posted 03 April 2013 - 07:16 AM

Our Dr explained that keeping children on a gluten-free diet when they don't need one is not the best idea. Most of out " fortified" foods are the breads and cereals. Our trace vitamins and minerals are in those foods . Keeping kids G F but not deficient in those vitamins and minerals is a careful balancing act that should always be done under professional supervision. Another reason she said was it can give children a sense that they are unwell or some how in danger of illness and crest undue anxiety as they grow and socialize. I was concerned about putting my son back on gluten after his test came back positive because t makes him so sick! After listening to the Dr's knowing for sure really is best. If my son is Celiac he will need certain types of Cancer screening and they will be on the look out for related complications as he grows. I would for sure make certain that they need that diet. MIL was wrong to do what she did, they are your children!


I must respectfully disagree with your doctor. Cereal grains are fortified because otherwise they provide little nutritional value.

My 2.5 year old is gluten-free and dairy free. His dinner last night was pork roast, mashed sweet potatoes, broccoli and green beans. Desert was pineapple, blueberries, and a homemade gluten-free peanut butter cookie. That meals is full of vitamins and minerals. I have a friend who routinely feeds her kids "fortified" kraft dinner for supper. Or chicken fingers and fries. Gluteny, nutrient poor foods.

gluten-free done properly is a better diet choice since you eat a wider variety of whole foods. Doctors who claim otherwise aren't familiar with the diet.
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#7 nvsmom

 
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Posted 03 April 2013 - 07:34 AM

Our Dr explained that keeping children on a gluten-free diet when they don't need one is not the best idea. Most of out " fortified" foods are the breads and cereals. Our trace vitamins and minerals are in those foods . Keeping kids G F but not deficient in those vitamins and minerals is a careful balancing act that should always be done under professional supervision. Another reason she said was it can give children a sense that they are unwell or some how in danger of illness and crest undue anxiety as they grow and socialize. I was concerned about putting my son back on gluten after his test came back positive because t makes him so sick! After listening to the Dr's knowing for sure really is best. If my son is Celiac he will need certain types of Cancer screening and they will be on the look out for related complications as he grows. I would for sure make certain that they need that diet. MIL was wrong to do what she did, they are your children!

I agree with Ollie's mom, those breads and cereals are only fortified because they are processed food-like substances. There is not anything in wheat that has nutritional value that you can't get in better ways from healthier foods.  The food manufacturers fortify those foods so that people will be more likely to buy them.... Sort of like how they started making foods low-fat but added sugar to make up for lack of taste - making their foods less heart healthy in the process.

 

If you swap wheat foods for gluten-free foods, bite for bite, then yes the gluten-free diet will be less healthy. Most people use the gluten-free diet as a springboard to cutting back on the excess amounts of grain that people eat - similar to the paleo, Zone or Atkins diet, which has proven to be a healthier way to eat.

 

Bset wishes.


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Hypothyroid - August, 2012

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#8 jacksonsmummy

 
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Posted 03 April 2013 - 01:41 PM

I agree with Ollie's mom, those breads and cereals are only fortified because they are processed food-like substances. There is not anything in wheat that has nutritional value that you can't get in better ways from healthier foods.  The food manufacturers fortify those foods so that people will be more likely to buy them.... Sort of like how they started making foods low-fat but added sugar to make up for lack of taste - making their foods less heart healthy in the process.

 

If you swap wheat foods for gluten-free foods, bite for bite, then yes the gluten-free diet will be less healthy. Most people use the gluten-free diet as a springboard to cutting back on the excess amounts of grain that people eat - similar to the paleo, Zone or Atkins diet, which has proven to be a healthier way to eat.

 

Bset wishes.

I am not arguing with anyone, just adding some info from our Dr. I am new here and new to this issue think I shall just lurk


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#9 jacksonsmummy

 
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Posted 03 April 2013 - 04:13 PM

I never said that the breads and cereals were naturally nutritious ...... That is why they are fortified! Most gluten-free replacements are not so her point was that with out proper supervision and education people who eliminate the gluten and simply replace them with gluten-free food replacements run the risk of not getting what they need. Dr Fasano was in agreement. It wasn't a judgment on how anyone is feeding thier children.
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#10 nvsmom

 
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Posted 03 April 2013 - 04:49 PM

I never said that the breads and cereals were naturally nutritious ...... That is why they are fortified! Most gluten-free replacements are not so her point was that with out proper supervision and education people who eliminate the gluten and simply replace them with gluten-free food replacements run the risk of not getting what they need. Dr Fasano was in agreement. It wasn't a judgment on how anyone is feeding thier children.

 

That's true - without proper education, people who switch to gluten-free foods might end up lacking in some nutrients if they are (unknowingly) making poor food choices. Too true... it's sort of sad that the food we buy in grocery stores often isn't what we should be eating, isn't it?


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#11 Ollie's Mom

 
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Posted 03 April 2013 - 05:35 PM

I never said that the breads and cereals were naturally nutritious ...... That is why they arue fortified! Most gluten-free replacements are not so her point was that with out proper supervision and education people who eliminate the gluten and simply replace them with gluten-free food replacements run the risk of not getting what they need. Dr Fasano was in agreement. It wasn't a judgment on how anyone is feeding thier children.


It was the statement that feeding a child a gluten-free diet and making sure they aren't deficient in vitamins and minerals is a tough balancing act that should only be done under professional supervision that got me. My doctor doesn't know the first thing about diet and nutrition, and the few dieticians I've met weren't much better.

Anyone following even a gluten filled diet can suffer from nutritional deficiencies since they fill up on high calorie, "fortified" foods at the expense of high volume, nutritionally dense, but low calorie foods. But grains can't be fortified with every micronutrient the human body requires.

And don't lurk because of these replies! I felt a need to put together a rebuttal because I don't want other parents who are considering trying a gluten-free diet for their little ones thinking that they may end up harming them.
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#12 cait

 
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Posted 04 April 2013 - 07:14 AM

Yeah, my son is picky enough that he'd probably wouldn't be getting what he needs gluten or no.  But I think a good bit of his pickiness is from years of stomach trouble while eating gluten.  We're gradually stretching his diet.  Our pediatrician is pretty unconcerned as long as he's healthy and growing, which he is.  My daughter, whose need for gluten-free is more questionable (she'd probably be OK gluten light, but our home is gluten-free, so that's what she eats), eats a pretty healthy diet for a 6 year old, so I'm pretty confident she's not missing out on anything by being gluten-free.  We do some replacements for bread, and occasional other things, but otherwise we just try to eat real food, and our kids are gradually coming along.  I think people in general (gluten-free or not) would benefit from paying more attention to the contents of their food.  I've been learning a lot in the last few years as our diet has changed.  It has been challenging and frustrating at times, but definitely a good learning experience.


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Dad has Celiac
Neg Celiac tests, positive gene test
Life vastly improved off gluten
Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

#13 Brandiwine

 
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Posted 23 April 2013 - 07:16 AM

We haven't opted for a gluten challenge and testing because trying to keep me from cross contamination while doing a challenge seemed overwhelming (that's the reason we moved to a gluten-free home in the first place). Also, I just can't imagine making him miserable for that long, knowing that many people get inaccurate results after gluten challenges anyway. I'm wondering if there's any point in having the genetic testing done on him. I know it doesn't give a definite answer, but it might tell us a little more about the odds of him developing celiac. Or maybe that's just my wishful thinking.

While he didn't have as intense a reaction as I thought he might, given how miserable he was before going gluten-free, he did definitely react-- just delayed. TIred and moody, constipation. I don't know that my MIL will ever understand, but at least we were able to tell her that it did affect him.

I'm totally happy to keep them on any diet that keeps them happy and healthy. I really don't get why people get all bent out of shape about it and how horrible it is for kids. Yes, there are times when I miss things. Yes, there are times when it's inconvenient. Yes, occasionally it's hard for the kids. But for the most part, it's really not a life of horrible deprivation. We eat pretty well and the kids are pretty happy with what we eat. (well, my daughter is. my son doesn't like food in general, but it has nothing to do with the lack of gluten or dairy).

Thanks for your thoughts!


People don't like to hear about things that threaten their outlook on life or what they see as "traditional". When I went vegan (before finding Celiac) I did it because of animal cruelty, I was educated on what was happening in factory farms and was horrified! Prior to finding this tragedy I was only following the ways I was brought up in as we all do, I wanted to share what I'd found help make a difference for these animals, I felt maybe people just didnt know because I didn't and that made the difference. I found that not only did they not want to hear it, it infuriated them to have me talk about it, like I was condemning them, they want their "blinders" it makes life "easier". After a time I found peace in myself about this issue and yes the passion still burns I want to find the highest peak and yell to the top of my lungs every horrible fact about factory farms! But I e come to realize that wasting my energy on trying to teach something to an unwilling audience is nonsense. They don't have to agree and that's okay. We all have our own lives to live, so your MIL doesn't nessasarily have to agree with, but in the case of feeding him gluten cookies, should be unacceptable, she should still follow your wishes, test results or no.
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon


#14 stanleymonkey

 
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Posted 23 April 2013 - 01:23 PM

Our daughters are both gluten-free, we never got a definitive answer as to wether they have celiac or not as the testing is so unreliable in little kids, and our ped didn't want us to make them ill to find out.
We see a dietician, and gluten-free has not done them any harm, they eat a more rounded diet than any of their friends and are very healthy. If you decide to go gluten-free, talk to a dietician, and they can help you plan foods that meet vitamin and fibre requirements.
As for going gluten free making a child think they are Ill and causing anxiety, my kids have no issues whatsoever. We live in an age of over processed foods, pestcides, and increased food allergies so much to the point that everyone has an issue with some food.
My mil is allergic to avocados, my husband bananas peaches and kiwis, I am allergic to kiwis to. None of us feel there is something wrong with us, or my kids. They are growing big and strong, eat things their friends won't even try, and are happy energetic bundles of mischief. Food is only an issue if a parent makes it an issue.
To the op, we were lucky that my in laws saw the meltdowns, and stomach issues pregluten free, so it was pretty easy. But a lot of people find the link between food and anything other than the gastro tract hard to grasp. You will have to teach your kids to be advocates for thereselves. My 4 yr old says no to food and she doesn't care who offers it!
Maybe you could print of some info and leave it at her place for her to read. My father in law was so upset, as my I laws are Chinese, and they show you how much they love you by feeding you. He was so upset about not knowing what to feed them, but once he realized he could still make things for them he was over the moon. He even eats gluten-free with them at times.
As for the testing, we stopped as both kids were so ill and our ped and gastro were worried about how sick my eldest was. Having an official diagnosis makes it easier for school, screening for other potential issues, you oh and you need to sit and go through the positives and negatives and talk to the doctor.
Good luck with the MIL, I am lucky mine is a gem!
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