11 Year Old Son Recently Diagnosed

[Confused in Iowa]

My 11 year son has recently been diagnosed as Celiac. He has absolutely NO symptoms of Celiac disease, is growing at a normal rate, has never had any stomach problems or problems with the food that he eats. The only reason they found this disease, is that he also has juvenile diabetes and so once a year, they do a complete blood screening and he came up positive for this. So we went to a pediactric specialist and he did the scope into the small intestine. They said that he has some "inflammation" and referred us to the dietician and to go 100% gluten free. The dietician said that the villi in his small intestine are not flattened out, but more just not standing straight up. In fact, they said that if he was not a diabetic, we may not find out he has this disease until he's in his 30's or older.

This is so hard to accept and to go along with since he is not having any symptoms of the disease. I'm glad he's not having any problems associated with this disease at this time, but if he felt 100% better by elminating the gluten in his diet, then it would be easy to accept and buy into whole heartedly.

We are working hard at trying to elminate the gluten in his diet, but it is really hard to find bread that he likes. I've made more bread in the past 2 weeks that I've ended up throwing away. I know he's probably just going to have to get used to the taste of something besides the good ol' white bread that he's used to.

But here's my couple of questions 1) was in the health food store and they had mentioned something about probiotics as it helps with inflammation in the small intestine - has anyone heard of this and any comments would be appreciated; and 2) I know they say 100% gluten free, and if he was actually getting sick from gluten, I know that is the only option, but if we try to eliminate as much gluten as possible and if you would only get a few traces of gluten in your diet, does the speck of gluten do as much damage as actually eating a diet full of gluten filled products? Before diagnosis, my son had a lot of gluten in his diet as any normal 11 year old child would with pizza, breads, spaghetti, eating out in restaurants, etc.

I hope I don't sound ignorant, but basically I am when it comes to this. I'm sure I will get more acquainted with the disease as time goes on. I wanted to talk to my Doctor about all this, but he made me feel as tho I just wasn't accepting the diagnosis. Thanks everyone for taking the time to read and hopefully you'll have some comments for me.

[mommida]

Hi,

I suggest the book by Danna Korn, Kids with Celiac Disease. It touches all the bases of things you will encounter. It has a quick reference section in the back about contacting companies and organizations.

Everyone wants to know how much is too much, if the body's immune system detects it - it starts damaging itselfs. ( one crumb)

Probiotics can be very helpful. I am still looking into information and don't feel I have studied long enough to give you advice on what to take.

We have a new cheat sheet for gluten free products, the Delphi gluten free product list. PM me your e-mail address and I'll send it.

L.

[Guest nini]

I second the recommendation for Danna Korn's book "Kid's with Celiac Disease" it will answer a lot of the questions you have.

Yes he has to be 100% gluten-free, and since it is genetic he had to get it from at least one of his parents. You are lucky that they found it now before his villi were completely damaged and before he started getting symptoms.

For more info about safe foods click on the link in my signature for my web page, at the bottom of my web page is a link to download the "Newbie Survival Kit" this will also help you with a lot of questions, and I believe the Delphi Forums most current list is part of the newbie survival kit.

Welcome to the board and to the world of gluten-free living. It's really not that bad.

quick add, my daughter's favorite gluten-free sandwich bread is by Kinnikinick, I get her the Italian White Tapioca Rice Bread... it comes frozen, I keep it in the fridge and then when she wants a sandwich I microwave two slices on a paper towel until warm (about 20-30 seconds)

[Confused in Iowa]

Thank you so much - I think this is going to all be so helpful to me to come to terms with this. Went out on the website and see that you have the menu for Outback of items that my son can eat. How exciting!!! We will have to try it and see how things go. I know once we get the hang of things, and get used to everything and living this new lifestyle and learning about the disease, it'll become old hat to us. For now I'm torn between feelings of anger, frustration, and upset that it isn't me that has the disease...nothing is worse than having your children with something...but I know, there are a lot worse things out there and so I'm just "crying in my beer". I keep telling my son that actually he's going to be so much more healthy then other kids, because of 1 his diabetes, we take care of his health and are on top of things, and 2 with the celiac disease, he will be eating more healthy. He's still able to do his sports, and lead a normal active lifestyle, so I need to remember that and feel fortunate about that. It's just still so new to us so I'm trying to focus my energy in finding new and exciting receipes and learning about the disease instead of dwelling on the inconvenience and change this is going to be for us. Thank you everyone.

[mommida]

What you are going through is normal. You realize this is a life changing diagnoses. We have been through feeling like this once upon a time.

I think you should try and grill or toast the gluten free breads.

I also suggest Kinniknick for a pre-made bread, and Chebe bread for a make at home mix.

L.

[momothree]

I have a question in relation to something someone wrote, but I can't figure out how to use the "quote" option (not very computer savvy ). I believe it was Nisla (?). You mentioned that in order for a child to have it, that one of the parents must have it too. I'm also fairly new to this whole thing, and I have to admit that the genetic aspect of it eludes me a bit. Two, and possibly all three, of our kids have it. So, both my husband and I had the Ttg test done and both of us came back negative. Does that mean that one of us actually has the gene even though we don't have the disease yet, or should be assume maybe one of our tests came back with a false negative? I was pretty much thinking we were in the clear, but perhaps I'm wrong??? Anyone who has any answers for me--it would sure be helpful

[Kibbie]

I'm still new to this but neighter my husband or I have celiac but my daugher does. Here is the answer her Dr. gave me.

She said it could be a recessive gene that neigher of us have it but we are both carriers of it. She also said that in some people it can get 'turned on' by outside forces... that it kind of lies dormant and then decides to be an issue.

Let me mention that she did say that these are only theories and that she still reads conflicting medical information about the genetics side to Celiac.

Hope that helps

I have a question in relation to something someone wrote, but I can't figure out how to use the "quote" option (not very computer savvy ). I believe it was Nisla (?). You mentioned that in order for a child to have it, that one of the parents must have it too. I'm also fairly new to this whole thing, and I have to admit that the genetic aspect of it eludes me a bit. Two, and possibly all three, of our kids have it. So, both my husband and I had the Ttg test done and both of us came back negative. Does that mean that one of us actually has the gene even though we don't have the disease yet, or should be assume maybe one of our tests came back with a false negative? I was pretty much thinking we were in the clear, but perhaps I'm wrong??? Anyone who has any answers for me--it would sure be helpful

[momothree]

Thanks for the info. So, I guess we may never know unless one of us start to show symptoms (if it gets turned on for some reason). We are both going to get our blood levels tested annually as well, in case something changes. I keep hearing so much about false negatives as well--it makes me paranoid. I tried reading something that explained the genetics of it to some extent, and it honestly read like Greek to me. In the meantime, I guess I'll keep savouring my pizza for as long as I can .

[Guest nini]

I have a question in relation to something someone wrote, but I can't figure out how to use the "quote" option (not very computer savvy ). I believe it was Nisla (?). You mentioned that in order for a child to have it, that one of the parents must have it too. I'm also fairly new to this whole thing, and I have to admit that the genetic aspect of it eludes me a bit. Two, and possibly all three, of our kids have it. So, both my husband and I had the Ttg test done and both of us came back negative. Does that mean that one of us actually has the gene even though we don't have the disease yet, or should be assume maybe one of our tests came back with a false negative? I was pretty much thinking we were in the clear, but perhaps I'm wrong??? Anyone who has any answers for me--it would sure be helpful

honestly there is still so much they don't know about all the genes for Celiac, they DO NOT have all the genes for Celiac mapped... aside from that if you only had the ttg test done then that is not enough to tell by. There are five specific blood tests in the celiac panel that ALL must be run to stand a chance of it showing up correctly. The rate of false negatives is entirely too high because the screening still isn't sensitive enough. So therefore if you have a positive result it's an absolute, but if it's negative it's only "not positive". Enterolab seems to have a better track record for correctly screening gluten intolerance and the genes for Celiac.

[momothree]

Nisla-

Both of my kids were initially dx'd with a Ttg test and both came back positive (my son's was confirmed with a biopsy), so what you are saying is that, although they only used the Ttg test for them, they are still positive (because positive is never false-right?), but because my hubby and I also only had the Ttg test and it came back negative, that it wasn't enough to determine certain negativity? I think that's what you are saying. Do you imagine we should get tested again with the full panel? No resting easy yet, eh? Interesting

[rat toe]

to Confused in Iowa---

The circumstances involving your son's diagnosis sound identical to mine! My doctors also beleive that if I had not had the bloodwork done I would not have found out about my celiac for years. (i've only had it for a year) I also have type 1 diabetes (for about 2 1/2 years now) and my celiac was caught completely by blood work. I have absolutely no syptoms and even before I found out about celiac I was eating gluten and feeling perfectly fine. It is true however that one bite of gluten does do as much damage as say, 100 bites of gluten. In response to your bread recomendation Whole Foods market makes 2 really good breads that I think taste even better than regualr ones. They are called "prarie bread" and cinnamon raisin. I hope everything goes well for you and your son--good luck!

[Confused in Iowa]

I just wanted to update everyone on how our new lifestyle is going being gluten free for a few weeks. You know it isn't nearly as bad as what you first think it will be. I do more cooking at home than I am accustomed to, but that isn't so bad either. My son is sick of baked potatos for supper, so last night made him scalloped potato's using corn starch for the thickening. He liked it. Tonight, going to make him some scotcheroos using gluten free form of rice krispies. But my son's attitude is SO much better. He used to be so short tempered and could get angry at the drop of a hat. He seems like a whole different boy. Don't have nearly the fighting between him and my 17 year old (you know brothers the oldest likes to pick on the youngest!) and my son wakes up every morning so happy. Even noticed with his math homework the other night he just whipped right through the problems and the math facts just were coming out so easily for him. Last year at the end of the school year, he was a D student. So this all makes the extra creative cooking that I do well worth it!

[Guest nini]

Nisla-

Both of my kids were initially dx'd with a Ttg test and both came back positive (my son's was confirmed with a biopsy), so what you are saying is that, although they only used the Ttg test for them, they are still positive (because positive is never false-right?), but because my hubby and I also only had the Ttg test and it came back negative, that it wasn't enough to determine certain negativity? I think that's what you are saying. Do you imagine we should get tested again with the full panel? No resting easy yet, eh? Interesting

You could request the full panel (if you are still consuming gluten) or you could do enterolab, or you could simply try the diet... (even if you don't have obvious symptoms if you keep a food journal you may discover somethings that you previously didn't associate with gluten... just a thought)

I'm not a Dr. I just play one on tv, no seriously, I'm just a mom of a celiac kid and have it myself. Celiac is genetic plain and simple.

[GFBetsy]

I have a question in relation to something someone wrote, but I can't figure out how to use the "quote" option (not very computer savvy ). I believe it was Nisla (?). You mentioned that in order for a child to have it, that one of the parents must have it too. I'm also fairly new to this whole thing, and I have to admit that the genetic aspect of it eludes me a bit. Two, and possibly all three, of our kids have it. So, both my husband and I had the Ttg test done and both of us came back negative. Does that mean that one of us actually has the gene even though we don't have the disease yet, or should be assume maybe one of our tests came back with a false negative? I was pretty much thinking we were in the clear, but perhaps I'm wrong??? Anyone who has any answers for me--it would sure be helpful

Just last week read an article from one of my husband's lab magazines (he's a medical technologist - runs bloodwork in the hospital). It was about whether genetic testing all people for celiac was a good idea or not. It said that most people with celiac have the DQ2 or DQ8 gene, but that there are some with a recombinant form of celiac where they get the DR7 gene from 1 parent and the DR5 gene from another. Evidently this combination of genes can create conditions for celiac disease. SO it is possible (but not very likely) that neither you nor your husband have celiac (or the propensity to develop celiac). I think that the only way you could be sure that neither of you have the DQ2 or DQ8 genes, however, is to have yourselves (or your children) genetically tested. If your kids don't have the DQ2 or DQ8 genes, but still have celiac, you'll know they have the recombinant form of the disease. On the other hand, if they DO have the DQ2 or DQ8 genes, you'll know that at least one of you has the genes for celiac somewhere in your genetic makeup.

Was that confusing? Hope not!

I just wanted to update everyone on how our new lifestyle is going being gluten free for a few weeks. You know it isn't nearly as bad as what you first think it will be. I do more cooking at home than I am accustomed to, but that isn't so bad either. My son is sick of baked potatos for supper, so last night made him scalloped potato's using corn starch for the thickening. He liked it. Tonight, going to make him some scotcheroos using gluten free form of rice krispies. But my son's attitude is SO much better. He used to be so short tempered and could get angry at the drop of a hat. He seems like a whole different boy. Don't have nearly the fighting between him and my 17 year old (you know brothers the oldest likes to pick on the youngest!) and my son wakes up every morning so happy. Even noticed with his math homework the other night he just whipped right through the problems and the math facts just were coming out so easily for him. Last year at the end of the school year, he was a D student. So this all makes the extra creative cooking that I do well worth it!

So glad he's doing better! Such improvements are definitely worth the extra cooking effort . . . especially when they stop fighting so much! It makes life in general MUCH less stressful, which almost makes the cooking fun - because you don't have to be the world's best WWF referee at the same time!