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Becky Parker
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Posted: Jan 14 2011 at 8:12am | IP Logged Quote Becky Parker

I have been searching on line for the answer to this question but there is so much info my head is spinning! I'm wondering if someone here could help me.
I have a 3 yo who was diagnosed with FTT at about 8 months. After a year of fretting I finally removed gluten and dairy from his diet. He improved and we were GFDF for quite some time.
Within the last year, due to a grocery bill that is hard to keep up with and the fact that this ds seems to be able to tolerate gluten, we have slowly gone back to a regular diet. But ... now he's eating very little (dh believes this could just be an age thing), he has really smelly stools, and for the past two evenings he's thrown up at dinner time, (regardless of what we have to eat). He shows no signs of illness - no temp, he's got lots of energy, etc.). So, if you know about, or have a history of celiac what would you think about this?
I am to the point where I want to get this child tested because I just need to know, but dh isn't on board with that. He says "if it helps to cut gluten out of his diet, just cut it out" but that's easier said than done.

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Posted: Jan 14 2011 at 8:38am | IP Logged Quote hylabrook1

Becky, I'm sorry your poor little guy is having such a time of it.

Often, what a dr. will advise in looking at food intolerance/allergy is to exclude the suspect foods for a few weeks, then try to slowly re-introduce them. If the problems come back, then you assume those foods were the culprit. Since you're looking at 2 food groups (gluten and dairy), maybe it would be best to re-introduce them one at a time, a couple of weeks apart , and see how it goes.

Could you talk to your pediatrician on the phone to see what he thinks makes sense?

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Posted: Jan 14 2011 at 10:30am | IP Logged Quote St. Ann

I was confronted with this question this week also. Our dd with diabetes may have celiac disease. Her blood work shows a suspiciously high number in the gluten category. I couldn't tell you which test it was. But the only way to determine if she truly has this disease she must be admitted into the hospital and knocked out to have a tube put through her whole digestive track. It is now our decision if we want to do this now. She is not complaining from tummy aches..., but she is small...
We might wait 2 months for the next blood test to see how her numbers look then, but in the mean time we were told to keep our normal diet so as not to obscure any test results in the future.

I feel for you, Becky.    I pray your little one feels better soon.

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Posted: Jan 14 2011 at 10:46am | IP Logged Quote CrunchyMom

I think the tricky thing is that while the test for celiac might tell you for certain that he DOES have it, it won't necessarily eliminate the possibility that he is gluten *intolerant* and it is in fact the gluten causing the issues whether or not he actually has celiac.

I understand wanting to know for sure! I'm just pointing out the possibility that the test won't necessarily eliminate gluten as the culprit and you might STILL have to follow your husband's advice.

I think that Nancy's advice is good. Cut gluten out again for a few weeks and see if it doesn't help with these current symptoms. Then, introduce it again to see if they return.



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Posted: Jan 14 2011 at 2:40pm | IP Logged Quote Erin

Becky

I have just read the Gluten Connection book. I highly recommend it! Your library may well have it. Fact of the matter is your son may actually not even be celiacs but he may have a gluten sensitivity. A very high percentage of people are and are unaware, and it is much harder to do an accurate test for. The book explains all of this, and much more. I learnt so much from this book.

Another book that made me passionate about gluten free cooking is Gluten Free Girl. I do understand about the food budget and a large family we have been grain, dairy and sugar free for several months now and it can be more costly in some areas. Funnily enough although we started to eliminate acne we are now wondering if some family members have a wheat sensitivity as reactions have occurred when we have 'slipped'.

If you decide to go this way, I can recommend a few blogs and books.

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Posted: Jan 14 2011 at 3:59pm | IP Logged Quote Becky Parker

Thanks for the helpful replies. Nancy, I wish we had a pediatrician that I could talk to about this, but when our son was struggling at 8 mos. the ped. told us to ween him cold turkey and put him on Pediasure. I told her I just didn't feel right about that and that's when she gave him the FTT label. When we went back at 2 years and he was doing much better (at that point he'd been off gluten and dairy for 6 months) she seemed upset that we had taken him off of "two whole foodgroups" and said nothing regarding the fact that he had grown by leaps and bounds! So, I guess I don't talk to the ped much about these issues. The idea to take him off of gluten and dairy came from a naturopathic doctor, but unfortunately she's almost 2 hours away.

Lindsay and Erin, I wondered if the problem might be a gluten sensitivity. Can children grow out of these? I think, when he started doing better and had increasingly more gluten with what seemed like no issues, I thought maybe he had a sensitivity, but grew out of it. But now I think I may have been wrong.

I guess I am hoping for a "for sure" answer because I think in some ways that will help me to get back to the healthier diet and not worry so much about the cost. (He's far more important!) Maybe just cutting out one at a time - gluten first, and then dairy, will help me to see more clearly what the issue is.

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Posted: Jan 14 2011 at 9:14pm | IP Logged Quote Erin

Becky Parker wrote:
Lindsay and Erin, I wondered if the problem might be a gluten sensitivity. Can children grow out of these? I think, when he started doing better and had increasingly more gluten with what seemed like no issues, I thought maybe he had a sensitivity, but grew out of it. But now I think I may have been wrong.


I'm not sure, I think sometimes with some sensitives if you give the child a big break (can mean years) they can then manage a certain level.


Becky Parker wrote:
I guess I am hoping for a "for sure" answer because I think in some ways that will help me to get back to the healthier diet and not worry so much about the cost. (He's far more important!) Maybe just cutting out one at a time - gluten first, and then dairy, will help me to see more clearly what the issue is.


I could be wrong, but it was my understanding you are best taking out all possibles and then slowly re-introducing one at a time.

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Posted: Jan 14 2011 at 9:35pm | IP Logged Quote CathinCoffeland

I remember posting here about 4 yrs ago "HELP TOXIC POO BOY!"

Yes really offensive bm's and vomiting can be celiacs symptoms as well as lack of appetite- your not hungry if your gut hurts,

We hit the jack pot and all 4 dc as well as dh and myself are celiacs.

It can be expensive but mostly if you are replacing wheat foods with gf foods. Try moving into rice and potato instead of pasta and thing corn tortillas mode it is just hard though, a nice fresh apple will always cost more than a box of mac and cheese
Our pediatric md was of the opinion that its not about celiacs versus gluten sensitivity but about how badly a celiac person reacts to gluten ie how quickly the damage builds.

If you react to gluten you are a celiac regardless of how strong the reaction or how quickly you react- the damage is cumulative and can heal.

either way lots of love and sympathy it is so hard!

We love GF girl too!

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Posted: Jan 14 2011 at 11:07pm | IP Logged Quote Chris V

...just tossing in a personal experience here; I've got a loonngg story but, for everyone's sake, I'll shorten it to:

I was having digestive issues last year and was trying to self-diagnos myself. I first began by eliminating dairy and gluten - I had tremendous success in how I felt, my skin, my overall sense of well being - but I still had some issues. I went in for a Sigmoidoscopy. They "officially" diagnosed my problems as Ulcerative Colitis (... not too terrible, though it can be absolutely debilitating for some, my case is mild); so after this diagnosis I reintroduced gluten and dairy back into my diet. I've been treating my UC with Homeopathy, but still, still, still, having some issues, not feeling tip-top, my skin was breaking out, a lot of things just didn't feel right. I could always excuse these things for stress, my UC, etc. Feeling motivated to change things again, I recently cut out gluten all together once again (about 3 weeks ago); what an unbelievable difference! My skin clearned, I feel clarity, comfort, health, and my UC symptoms have improved ... all connected to the gluten? Seems like a big coincidence otherwise . I'm convinced that I have gluten sensitivities that I had NO idea existed!

... that was my *short* version

ETA: I noticed that I have created a new word: clearned. Quite unitentional, but actually, quite accurate ... my skin has been both cleaned and cleared.   ... how about Cleansed and Cleared - clearnsed. That's a good one, I'll stick with that, clearnsed.

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Posted: Jan 18 2011 at 7:35am | IP Logged Quote Becky Parker

Thanks again, Ladies.
My children were weighing themselves last night, just for fun, and dh and I realized my 3yo has lost 4 pounds since the last time he was weighed which was months ago. He looks pail and thin too and I am concerned.    I'm going to get back to the gluten free diet for this child and I'll order the books recommended by Erin. I could use some prayer regarding how to deal with something though. My dh doesn't think the whole family needs to be GF, but I just know it's going to be really hard to have just one on a special diet. I understand why he's thinking that way. My 17yo can eat an entire loaf of bread for a snack. It would be really expensive with GF bread!

And, in all honesty I feel overwhelmed with the idea of preparing 2 different meals when I'm doing a poor job of getting one on the table lately (the reason is all good - our new baby is 5 weeks old and very precious!), and the 3yo is certainly worth the extra work. I just worry about how I'm actually going to do it.

So I'm asking for prayers and any advice you have!

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Posted: Jan 18 2011 at 8:29am | IP Logged Quote JennGM

Becky, We're not gluten free, but we do wheat free. I wouldn't give up the breads for the rest of the family. There are small ways to be gluten free without being too costly.

Perhaps you could share some of your usual rotated meals and we could give some hints on how to switch so you're not always cooking for two people.

if you're doing pasta, I would make separate rice pasta for your son, and the rest regular pasta.

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Posted: Jan 18 2011 at 2:55pm | IP Logged Quote Erin

Becky

As I've shared we recently have gone grain free etc for the whole family. At first we had the whole family eating this way but gradually we have alternatives for a few meals, but not many. Being pregnant (and you have a new babe) I only have so much energy, so I understand your reluctance to make two meals, plus for my child in need he finds it hard to watch everyone else eat something different from him, so I avoid conflict.

What this means is some items are eliminated totally from our diet, ie. bread was/is one such meal. Plus I don't do any pasta meals, not a hardship as no one here really loved pasta anyway. Regards bread, as a treat we occasionally have wheat bread for the whole family and ds makes almond bread. Btw really recommend Elena's recipes and her cookbook has just arrived too Baking is now a treat for us, and we will do mostly separate mixes as almond flour is pricey. But gluten free flour is cheaper (I'm avoiding for my son but you wouldn't have to).

On a side not, I respectfully suggest that your 17 yr old eating a whole loaf of bread in one sitting can indicate an allergy addition. When I discovered my 13yr old ate 22 oranges in one afternoon I knew he had one. (Citrus can trigger hayfever, which it does in his case)

Jenn's idea of sharing your menu is a great idea, some items you can easily switch ie. tamari instead of soy sauce. You can do this



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Posted: Jan 18 2011 at 5:11pm | IP Logged Quote Becky Parker

JennGM wrote:
Perhaps you could share some of your usual rotated meals and we could give some hints on how to switch so you're not always cooking for two people.



Thanks Jennifer. Really, I think the regular meals would be fairly easy to change. My kids don't mind GF pasta if I cook it with sauce in the crockpot.   We eat rice and potatoes alot so that wont be a problem. Maybe I'm wringing my hands over this and it's not the problem I think it will be. When I really stop to think about it, the things that are difficult are the "special" meals or treats like pizza on Saturday, doughnuts after church on Sunday, soft pretzels during Lent .... My 3yo is just old enough to notice these things and he likes them as much as everyone else.
Maybe I just need to find a good recipe to use for baked goods. I've tried various breads and treats made with rice flour but this ds wont eat them. I probably need to get away from the packaged mixes and try some of the recipes for flour blends.

I do have a couple of questions that would help though -

How do you make a cream soup without flour?
I'm thinking of an alternative to canned soup in casserole recipes. It would be great if I can find somehting like this and be able to make it for the whole family.

What about meatballs or meatloaf? What takes the place of the bread crumbs? Or do you use GF bread and bake as normal?

Is there a GF bread that will stay soft? All that I have tried get pretty dry and require toasting before eating them.

I'll keep thinking - I'm sure I have more questions!
Thanks!

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Posted: Jan 18 2011 at 5:20pm | IP Logged Quote Becky Parker

Erin wrote:
Becky

Regards bread, as a treat we occasionally have wheat bread for the whole family and ds makes almond bread. Btw really recommend Elena's recipes and her cookbook has just arrived too


I just discovered Elana's website Erin! Let me know if you like her book! Did you purchase the almond flour from one of the sites that she recommends? I was thinking that maybe it would have a better flavor. It is expensive, but from the one recipe I saw it looks like she blends it with other flours? I wanted to let you know I decided to order the Gluten Connection book too. We don't have use of our library anymore since were outside the city limits but I thought it looked like it would have good information.


Regarding my ds and the loaf of bread, I really believe he has an allergy of some sort. He has chronic nasal congestion. I keep telling him he should go dairy free for a while to see that is the culprit. He's 17 and goes to highschool so I don't have alot of control over what he eats for lunch or when he's with his friends. It's going to have to be his decision.

Actually, along those lines, I could probably think of a reason for all of my kids to go GF and/or DF. I just need my dh to be on the same page. I keep praying that he and I would have wisdom for all of this! Thanks for sharing yours!

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Posted: Jan 18 2011 at 6:53pm | IP Logged Quote Erin

BeckyParker wrote:
When I really stop to think about it, the things that are difficult are the "special" meals or treats like pizza on Saturday, doughnuts after church on Sunday, soft pretzels during Lent .... My 3yo is just old enough to notice these things and he likes them as much as everyone else.


Becky, for now we have just eliminated all these sorts of treats, but I have to say the children are missing pizza, pancakes and meat pies. We've just found a lovely pancake recipe on Elana's Pantry, ds has that and I make wheat flour for everyone else. I'm hoping between Elana's blog, her book and other blogs such as The Spunky coconut we'll be able to do some of these treats occasionally, all homemade though.

BeckyParker wrote:
I probably need to get away from the packaged mixes and try some of the recipes for flour blends

There are lots of ideas out there, you can also buy a gluten free flour mix at the grocery store (well you can in Aust.)

BeckyParker wrote:
How do you make a cream soup without flour?


Lots of alternatives to thickening soups/stews. Cornflour is easy and effective. I'm currently using Guar Gum and there is also Xantha Gum. Both from the health food shop.

BeckyParker wrote:
I'm thinking of an alternative to canned soup in casserole recipes. It would be great if I can find something like this and be able to make it for the whole family.


I've been doing more a tomato flavour casserole, using tomato paste, or canned tomatoes and herbs. I just experiment. When dh encouraged me to take ds off tomatoes as well I just used herbs. As you can use grains there are gluten free stock cubes in the supermarket.

BeckyParker wrote:
What about meatballs or meatloaf? What takes the place of the bread crumbs? Or do you use GF bread and bake as normal?


Well you could use rolled oats if ds is not reacting to them. A few schools of thought on Rolled oats, although they do not contain gluten they are often grown and processed alongside of gluten so could become contaminated. The other school I read was that the make up of rolled oats is very similar to the make up of gluten which is what can cause problems for some.
For now we have eliminated rissoles but I know dh would love to have them.

BeckyParker wrote:
Is there a GF bread that will stay soft? All that I have tried get pretty dry and require toasting before eating them.

Well the ones almond flour ones we have made don't dry out. If you'd like to buy gluten free bread for just ds Sarah has done the trialing.

BeckyParker wrote:
Let me know if you like her book! Did you purchase the almond flour from one of the sites that she recommends?

Will do
I'm in Australia so I'm sourcing sites over here. Still very pricey, hence the treat factor. Although the other day ds ran out of almond flour and we blended up almonds into flour, very easy. Let me know what you think of the books.

BeckyParker wrote:
I really believe he has an allergy of some sort. He has chronic nasal congestion.

Sounds like he does, your common culprits are dairy and wheat. It is hard, very hard with teens (how do I know? ) but you can reduce even if you can't control in your situation.

BeckyParker wrote:
I could probably think of a reason for all of my kids to go GF and/or DF. I just need my dh to be on the same page.

Your dh is supporting you with ds3, so that's wonderful! Start making gradual changes with menu and when you shop. This will have the effect of spilling over to the whole family anyway, you will look at food differently. Angela has some poststhat challenge how we look at this whole area too. It's quite exciting really




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Posted: Jan 18 2011 at 9:31pm | IP Logged Quote pmeilaen

Here is a lab that offers highly sensitive stool tests for gluten sensitivity and intorlerance. We had our son tested there and it came back positive. He also tested positive for malabsorption: EnteroLab.

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Posted: Jan 18 2011 at 9:40pm | IP Logged Quote Erin

Eva

What is malabsorption?

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Posted: Jan 19 2011 at 12:05am | IP Logged Quote JodieLyn

rice can be used in meatballs or meatloaf.. I think in the typical way.. check for porcupine meatballs as a reipe that uses it.

and arrowroot is a thickeer I've heard is used

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Posted: Jan 19 2011 at 9:13pm | IP Logged Quote pmeilaen

Erin wrote:

What is malabsorption?


Malabsorption can happen when your body is allergic or sensitive to something in your food. (There are also other medical reasons for it). It can lead to a "leaky gut." That means that your body cannot absorb all of the necessary nutrients from your diet. Stunted growth, low weight, overall weakness, and more can be the results.

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