Results Of Kids Testing :(

[Mom-of-Two]

Hi there, I've been around for awhile now since my own celiac diagnosis about 4 months ago. I just got the results on my 7yo's celiac panel today, and she has "elevated" levels so he wants to do the endoscopy- all this time I had said that if either of the kids tested positive in their blood testing, I would not bother with an endoscopy, because I have celiac, it would be obvious they did too, and we'd all live a gluten free life, end of story.

Now that I have heard the news this morning, I was quite upset by it, which was a surprise to me, I thought I would accept it much better. But, wow, stunned! I have to get my youngest (4) tested this week, he gave me an order for his blood work but he was sick so I was waiting to be sure he was better before I did blood work.

The one number was the elevated one- her serum IgA and IgG were both in normal range, her anti-transglutaminase antibody was 78.20 (she said <20 was normal I believe) While that is higher, it didn't jump out like whoa, that's high either--- my labs were SUPER out of the ordinary so it was sort of shocking. But he told me on the phone that number meant she has celiac, 90% accuracy.

I am so hesitant on this endoscopy, I just feel like the end result is the same- gluten free diet. My hubby is already gluten-free with me, and it's been a transition but our daily life is not too affected. Being a child would of course be different- I am thinking about school activities and birthday parties, sleepovers, etc but I think that I know her good friends parents well enough, I could navigate that. And I also have a gluten free bakery I love, which I could use to send her treats for school parties, birthday parties, etc. so in reality once the shock wears off, I will be more accepting of it.

If my 4yo gets a positive blood test, no endoscopy- I won't put him through it, but what if he's negative---- should I just make him gluten-free as well? I can't even imagine, he eats no meat or eggs, he eats pasta as his main meal every single day, cereal, waffles, snacks, his entire diet is gluten based. I don't know how to make him eat more foods, despite the possibility of celiac in his near future!

I know many of you say why do an endoscopy, the end result is the same, and it won't show us any more than we already know. I am just uncertain, I think at 7 she would be ok with the procedure, it's at Children's Hospital so they do it all day long.

I just feel defeated I didn't want to pass it on to my kids, never wanted them to be different or those kids that bring their own food everywhere they go (I thought that was just Mommy!)

[pricklypear1971]

I'm sorry. I know the deflated feeling. I had it when a few of my son's tests came back "off". Not the Celiac tests but the vitamin levels and his DNA was +. We are in the "retest" mode - holding our breath til next testing.

It is a punch in the gut - thinking of the gluten-free challenges ahead for a child.

There is some new criteria for dx'ing celiac in kids - Open Original Shared Link

Perhaps she meets this guideline for dx without scope?

I would just test the 4 year old and see. There is gluten-free pasta.

[MitziG]

Well, ask yourself- what if the biopsy is negative? Are you really going to disregard that blood test when you know biopsies frequently MISS celiac? You would be setting her up for future health issues for the sake of being able to indulge at birthday parties. Its not worth it. As for the 4 yr old- the fact that the only foods he wants to eat are gluten based is a big red flag. Gluten is very addictive. If it were me, knowing what I know now, I would never have given my kids a bite of gluten. Instead they both developed celiac, and the problems that go with it. It is harder to heal than to stay well in the first place. Yes, social functions are a pain for us. But so is sitting up with a child crying all night, night after night. Think long and hard before you try and convince yourself to ignore what is pretty obvious.

[Mom-of-Two]

No, we are obviously going to feed her gluten-free regardless of a biopsy- I would NEVER let her continue a gluten diet with positive blood labs- with the fact I have celiac myself!! My point I guess was is there any other REASON to scope her? I had suspicions the minute I learned I had celiac myself- my first thought was getting my kids tested. It is a relief in a way to know, and to simplify my kitchen since hubby and I are already gluten-free. I just didn't want them to deal with it, you are right, feels like someone kicked me in the gut, I just have to let it simmer awhile and then I will jump into action and do something about it.

The lack of family support is really taking a toll on me. I am lucky that my husband is 150% supportive and knows possibly more about it than I do, he has autoimmune issues as well- psoriasis and psoriatic arthritis, so going gluten-free was something he wanted to try anyway. He is amazing with it, and I couldn't ask for more, problem is everyone else. I cannot believe the response I got today when I told my Dad that she had positive labs- he thinks it's "nonsense" and the whole gluten "FAD" is ridiculous- and proceeded to tell me that 97% of people with celiac go through life with no ill effects---- wow did he get an earful, why do other people think they know MORE about a disease you have??

Frustrating. ((

[pricklypear1971]

Well, in my opinion the only reason to scope is to get a dx. Will the doctor put it in writing without the scope????

You'll need that "proof" somewhere down the line, more than likely - for both kids (if indeed they both have an issue).

The other reason for a scope, actually, would be if one or both of them doesn't improve on the gluten-free diet. I'm sure at that point they would want to scope to check for other things. I've heard of kids getting scoped more than once. Once for dx, once because they aren't improving...

So, I'd keep an open mind. In the end, you're the parent and it's up to you and hubs.

[Minette]

Well, in my opinion the only reason to scope is to get a dx. Will the doctor put it in writing without the scope????

You'll need that "proof" somewhere down the line, more than likely - for both kids (if indeed they both have an issue).

The other reason for a scope, actually, would be if one or both of them doesn't improve on the gluten-free diet. I'm sure at that point they would want to scope to check for other things. I've heard of kids getting scoped more than once. Once for dx, once because they aren't improving...

So, I'd keep an open mind. In the end, you're the parent and it's up to you and hubs.

In your situation, I'd probably skip the scope if the doctor is willing to diagnose without it. But there is the "baseline" rationale (the second thing pricklypear mentioned).

If the doctor insists on a scope to get a dx, I'd do the scope. That's basically where we are with my DD -- waiting to see if the doctor will dx her without a scope. But since you already know you have celiac, I think that argues more strongly in favor of skipping the scope if possible.

Sorry to hear about the results. I know there's a difference between thinking "I can deal with this if it happens" and actually having to deal with it. But I think you'll feel better once the shock wears off.

As for the 4yo -- my just-diagnosed 6yo is the same way. Other than a few kinds of fruit, ice cream, and brown rice (which mercifully she loves), there isn't a thing in her diet that doesn't include gluten. So it's going to be a challenge... but it can be done. And it might be easier if you're taking the whole family gluten-free anyway.

[cmdoppler]

I was wondering too, it wouldn't do any harm to have the whole family go gluten free right? In our family we are waiting on tests for our 5.5 year old son. We also have a 7.5 and almost 9 year old.

[pricklypear1971]

I was wondering too, it wouldn't do any harm to have the whole family go gluten free right? In our family we are waiting on tests for our 5.5 year old son. We also have a 7.5 and almost 9 year old.

I highly suggest testing the entire family before going gluten-free. You may find unexpected reactions going gluten-free that prompts you to want testing - and if you've gone gluten-free you can't be accurately tested. Do it now, then go gluten-free.

A gluten-free lifestyle won't hurt anyone. You may need to supplament b's if you don't eat gluten products outside the house, if bread is the current primary source of b's.

[Takala]

If my 4yo gets a positive blood test, no endoscopy- I won't put him through it, but what if he's negative---- should I just make him gluten-free as well? I can't even imagine, he eats no meat or eggs, he eats pasta as his main meal every single day, cereal, waffles, snacks, his entire diet is gluten based. I don't know how to make him eat more foods, despite the possibility of celiac in his near future!

He's only four years old. You're the grown up. You make the rules. You run the household, shop, prepare. ALL of those foods come in gluten free form. Bread can be purchased or made gluten free for sandwiches. So can pizza crusts. This isn't even a balanced diet.

And the extreme pickiness is already typical of a food intolerance lurking.....

Many cultures existed for thousands of years without wheat, using other forms of starches for carbohydrates, such as beans, potatoes, rice, cassava(tapioca), bananas and plaintains, millet, amaranth, quinoa, corn. It is only in the past few thousand years that the human diet has been expected to conform to the fact that the Great Plains of the Americas can be exploited to grow a lot of it.

[MitziG]

I am sorry I misunderstood. Relieved to hear you will put her on the gluten-free diet regardless of biopsy. If the results are irrelevant to you, I would probably do the biopsy simply to get a "benchmark" of where she is at internally in case there are problems down the road that you would need a comparison.

As for your picky 4 year old, one of my kids was the same- all she ate was gluten and dairy. Interestingly enough, once we got through the very tough withdrawal period, she developed a ravenous appetite and devours foods she wouldn't touch before! You may find the picky eater becomes less picky once they detox from gluten!

[Cara in Boston]

My 7 year old and I are gluten free.

I was sad for him at first, and thought it would be hard, but he is handling it like a champ. It has been one year now and he has changed from my pickiest eater to the best eater in the house. It is not as hard as I expected to keep up with birthday parties and classroom celebrations. I try to prepare him for disappointments (honey, there will be pizza at the party and it will probably smell delicious but we are bringing our own pizza . . . etc. etc.) He looked at me like I was crazy and simply said, "mom, its only food; I'm not going to the party for the food."

In the long run, I think giving up gluten was EASIER for him then it was for me. I'm so glad he was diagnosed at this young age.

My 9 year old has tested negative. We were told to do a blood test every two years - sooner if we see any symptoms. I only cook gluten-free at home, but he does have regular cereal for breakfast several times a week and uses regular bread for sandwiches. Other than that, all other meals are gluten-free (including pasta, pizza, etc.) My problem is that I see "symptoms" in him every day - even if they are just normal kid things . . . poor kid is tired of me asking about his poop.

Be happy you have a diagnosis you can work with. So many never find out the problem or have to use drugs and treatments to get healthy. You will do great.

Cara

[Minette]

As for your picky 4 year old, one of my kids was the same- all she ate was gluten and dairy. Interestingly enough, once we got through the very tough withdrawal period, she developed a ravenous appetite and devours foods she wouldn't touch before! You may find the picky eater becomes less picky once they detox from gluten!

I never get tired of hearing this. (And Cara's comment too.) I'm so desperately hoping my 6yo is the same way -- although I dread the "very tough withdrawal period." How did you get through it?

[Mom-of-Two]

Wow, that gives me lots of hope!!

[MitziG]

How did we get through it....hmmm...I don't know. My son and I did not go through withdrawal (all 3 of us dx together) but DD did, big time! She had been asymptomatic, but once gluten-free she began reacting violently to even trace amounts, as in puking all night. She developed huge weeping eczema sores all over her body, was crazy fatigued and mean as a wet cat. Then I tried to take her off dairy to see if THAT was causing the issues- and her immune system freaked out. She was constantly sick with viruses, ear infections, and finally, a bout of shingles in her ear drum that put her in the hospital for 3 days. She lost most of her hearing and had to get hearing aids (at age 12!) Thankfully, her hearing has mostly returned, and gradually the fatigue and irritability faded (took about 7 months!) She still pukes a lot if she gets cc, but overall is much better! She is happy, healthy and no more eczema! Her "buddha belly" that we teased her about since she was a toddler disappeared as well. But, I won't kid you- I really questioned if we were doing the right thing, many, mnay times! The fact that she went thru such a bad withdrawal shows how badly her body was addicted to it I guess! Fortunately, for most people, it isn't that bad. My 7 yr old walked away from gluten without blinking, and his health has improved ever since. I had a few relapses where I cheated (which ended once I started puking in response to cheating!) But no withdrawal symptoms. Going casein free has been tougher actually. Wish you the best in your experience!

[Sassy Cat]

My daughter is 11 and has recently been diagnosed with Celiac disease. My husband has had DH for about 6 years and his mom has Celiac so when the blood test came back I was kind of against doing any kind of scope. My daughter also had some bouts of blood in her stool which I am now pretty sure were from many years of constant diarrhea. When I talked to my daughter's GI, I listened to his reasons for wanting to do both a scope and colonoscopy. I ended up going ahead with the biopsy largely because of the blood in her stool - I did not want to miss some other problem by avoiding the test. In the end I am so glad that I went ahead with the biopsy. I thought I was ready for my child to be diagnosed. I already know about the gluten free bakery. I know how to cook gluten free. I know which restaurants have a gluten free menu. I figured a lot of this out when her dad was diagnosed. I found out I was not ready for the kid issues. After just a few weeks and a whole lot of mistakes at her school and I found myself in the position of asking for a 504 plan. I do not think I would have been able to get the 504 plan had I not went ahead with the scope. My daughter is 11 and her friends are 11 and I just did not think about how 11 act towards each other. When they had cookies at a field trip not only could my daughter not eat the cookie, her friends taunted her with their cookie. When the art teacher decided to have a snack, my daughter was not allowed to even read the ingredients and had to sit there with nothing because her snacks were in the classroom not in the art room. My daughter has had to throw part of her lunch away because other kids were grabbing it and contaminating it with their crumb covered hands. As I started thinking about middle school, which will include cooking classes that every kid takes, I knew a plan that the school would have to follow would be in the best interest of my daughter.

[Mom-of-Two]

She is having her endoscopy on Wednesday and I am growing anxious and nervous, wondering if I am making the right choice- given her elevated numbers and my having celiac, on one side it seems silly to put her under anesthesia to "See" it but, my hubby thinks it's a good idea just to KNOW and be able to see that damage, if there is any, and know where she stands.

For those whose kiddos have undergone the scope, anything I should know? It will be at the children's hospital so I am quite confident with her care there, most of my concerns are with the anesthesia and after effects/risks. She has never had any sort of anesthesia or sedation of any kind, no surgeries, no dental work. I did not feel my greatest after I had my endoscopy, I was just icky feeling all that night and the next day, it took me 2 days to really get back to normal, I felt queasy and sleepy, even though I didn't even have anesthesia, just the twilight!

I had my 4 year old's labs done today, and will know in 5 days. I am then faced with just putting him gluten-free regardless (with the rest of us) or letting him eat his current diet if he is negative. I feel like given the genetics, he will eventually test positive!

Just a follow up on the lab numbers- the pediatric GI tested for IGG (was 20) and IgA (was 190) serum, and then the tTG was elevated at 78.20 (>20 abnormal she said). So the fact that she has that elevated number means she has those antibodies, correct? You cannot have an elevated test without having true celiac disease- this is correct?

I know, I still have questions after 4 months of living it myself! My numbers were through the roof though, I realize I'm an adult, just trying to understand where we are.

I am going to contact her pediatrician for labs on iron, folate, B12, Vitamin D after all is over with the scope.

Thanks a bunch for any reassurance!

[T.H.]

My 13 year old daughter was diagnosed a little over 2 years ago, and we did not have her scoped. My father had been celiac for 8 years and I had just been diagnosed, too, so I felt comfortable having her diagnosed via the bloodtest, and so did her doctor. My brother was diagnosed a couple months later, and my son's test came back negative.

In the end, the whole family went gluten free. Even though my son's tests were negative, he had symptoms that went away while eating gluten free, so I'm very glad that we had him try the diet. We attempted a 2 week eating-gluten trial for my son 1 year after we started the gluten-free diet, but only lasted a week because it was obviously affecting him.

My daughter we had scoped about 6 months ago. She had continuing trouble on the gluten-free diet, so at first we tried an elimination diet and found a few more foods and products that were an issue and dropped them. But even though her health improved, there have been some problems that persisted and we couldn't figure out what was causing them, so we finally had her scoped.

We didn't find anything, but I'm still glad we had it done. However, I believe I would do it the same way if I had to do it again; waiting on the scope for a year or so.

I'm comfortable with the celiac diagnosis, so the only thing scoping would help us with might be to root out other problems. I don't need to see the gluten damage to believe it. But since I was waited for my child's insides to heal from the gluten damage, any other damage would have been easy to identify as 'not gluten.' Or, possibly, a later scope would have helped determine if my child had been healing as she should be or was still having trouble, you know?

It's not for everyone, but it has turned out well for us, having done it this way.

[beebs]

No, we are obviously going to feed her gluten-free regardless of a biopsy- I would NEVER let her continue a gluten diet with positive blood labs- with the fact I have celiac myself!! My point I guess was is there any other REASON to scope her? I had suspicions the minute I learned I had celiac myself- my first thought was getting my kids tested. It is a relief in a way to know, and to simplify my kitchen since hubby and I are already gluten-free. I just didn't want them to deal with it, you are right, feels like someone kicked me in the gut, I just have to let it simmer awhile and then I will jump into action and do something about it.

The lack of family support is really taking a toll on me. I am lucky that my husband is 150% supportive and knows possibly more about it than I do, he has autoimmune issues as well- psoriasis and psoriatic arthritis, so going gluten-free was something he wanted to try anyway. He is amazing with it, and I couldn't ask for more, problem is everyone else. I cannot believe the response I got today when I told my Dad that she had positive labs- he thinks it's "nonsense" and the whole gluten "FAD" is ridiculous- and proceeded to tell me that 97% of people with celiac go through life with no ill effects---- wow did he get an earful, why do other people think they know MORE about a disease you have??

Frustrating. ((

My grandad got bowel cancer at 45 after a lifetime of sickly tummy - and a family full of coeliac's. Go through life with no ill effects my foot!

Sorry your family aren't supportive. It must be awful, mine are because they are all coeliac's so they get it.

I'm sure that your daughter would get through and endo with flying colours - but you have already said that you are going to keep her gluten free regardless of the results. If you are coeliac and your daughter has a high positive then I'd probably just leave the endo. Two of my kids have had them, one negative and one borderline and the GI wants them both to do a gluten challenge and repeat endo. I'm not sure what to do either - its so hard when its your kids isn't it?

[1974girl]

I have gone through the same thing. My husband is type 1 diabetic and they share almost the same genes as celiac. (Both are Dq2 AND dQ8 triggered) So, when my daughter tested postive on blood, I wasn't sure we wanted to scope. I probably would have gone gluten free if the biopsy was negative because I would have regretted it if she had infertility or developed type 1 diabetes herself. So... we did the biopsy and found out that she also has EE (esophagus issue caused by other food allergies) and she has ulcers. We had to undergo other allergy testing that showed multiple other allergies. So, I was glad we did the scope. As far as celiac, she showed "simplification" which I think means blunting. So we caught it before total villi destruction. If I had not done the biopsy I would have always wondered if she really had it or not.

Now...2nd kid is supposed to be retested next month. I will be ok with just blood with her. She has already had allergy testing and not allergic to anything. So, I am wishy washy. Glad we did it with the first child but won't do it with the second.

[1974girl]

I have gone through the same thing. My husband is type 1 diabetic and they share almost the same genes as celiac. (Both are Dq2 AND dQ8 triggered)

Just wanted to clarify that there are other gene combinations that cause celiac. Just in our case it is Dq2 and Dq8. My other child is double DQ2.

[Victoria6102]

An endoscopy is nothing. I had it done when I was 15 and it is completely fine. It only takes 20 minutes (or less) to do it. Afterwards, she will probably just feel groggy, and maybe a little sore throat. Buy some popsicles! by the next day she will be fine. Just when you go home, let her sleep. She'll probably want to sleep anyway! good luck! I definitely feel that the endoscopy was worth it! My blood tests were negative and I was getting tested for something else, but even if my blood tests were positive ii would have gotten the endoscopy. I need the peace of mind that I actually do have it, so getting the endoscopy is important to me. Otherwise I'd be wondering my whole life . And do the endoscop now, because if you decide not to, but then later in life she decides she wants to have it confurmed through biopsy, she'd have to go back on gluten to get accurate results.

Hope it goes well