Very Confused About 10 Year Old Son's Diagnosis

[jmoody74]

Hi,

This is my first post but I've been coming on for a while and reading posts and it has been very helpful. My situation is this. My 10 year old son has been sick for over a year with stomach problems. My primary care provider originally diagnosed him with reflux, then a slew of other things, until just recently, 3 weeks ago, saying "maybe it could be celiac disease". He did some blood work and told us to start him gluten free, which we have done.

At his 2 week check up, I found out that he did not do the appropriate blood work to diagnose celiac disease, he only did a CBC which was "relatively normal". He is now sending him to a pediatric gastro. but I have to wait another 7 weeks for that appt. I am not sure if when we get to that appt, he will be able to be properly diagnosed seeing as he will have been gluten free for 3 months by then. He has been going OK on this new gluten free diet but still has occasional stomach problems which I think stems from our inexperience in completely reading and dissecting labels.

I just am stuck right now and not sure what to do or how to proceed. This is all so confusing and waiting for another 7 weeks for help just seems like an aweful long time. Any ideas, or advise? Will the tests be accurate when he finally sees an appropriate doctor, and should I just assume he has celiac disease because this diet has caused such an improvement in his condition?

Thanks

Jen

[happygirl]

Jen,

Welcome to the board! I am happy you have joined us. Although, I am very sorry to hear of all you have gone through with your poor son.

To be tested for Celiac, he needs the whole blood panel run. However, being gluten free for an extended amount of time negates the purpose of testing. Once you take gluten out of the diet, the body begins to heal, and the antibodies stop being produced. No gluten, no antibodies. (Its like measuring the blood sugar of a diabetic who maintains their diet well....just because their sugars are 'normal' doesn't mean they don't have diabetes, it means they are managing their diet so that it isn't be activated.)

So, your ped GI will *probably* tell you to put him back on gluten, and then test in a few months----which is correct advice, if you want an accurate test.

However, for many people, that is not an option. It is more important to see the dietary response than to continue eating gluten. That is a personal decision, and depends on a variety of factors.

There are a variety of people on this board, some with "sound" diagnoses, and some without. We treat everyone the same.

Best of luck,

Laura

[jmoody74]

Thanks Laura,

Your response was extremely helpful. I am not sure about putting him back on gluten for the blood tests. I figured that might be what needs to happen but I really don't know how I feel about putting him through all that pain again. I guess we'll just see how he feels. I look forward to communicating in this forum and will probably have many more questions. Thanks for making me feel welcome during this trying time for us. My son actually feels better knowing he isn't the only kid out there with this, although he does feel singled out in the classroom. This is much more extensive than I could have ever imagined. I never thought about school lunches, birthday parties, etc. Guess we have a long road ahead of us.

THanks again,

Jen

Jen,

Welcome to the board! I am happy you have joined us. Although, I am very sorry to hear of all you have gone through with your poor son.

To be tested for Celiac, he needs the whole blood panel run. However, being gluten free for an extended amount of time negates the purpose of testing. Once you take gluten out of the diet, the body begins to heal, and the antibodies stop being produced. No gluten, no antibodies. (Its like measuring the blood sugar of a diabetic who maintains their diet well....just because their sugars are 'normal' doesn't mean they don't have diabetes, it means they are managing their diet so that it isn't be activated.)

So, your ped GI will *probably* tell you to put him back on gluten, and then test in a few months----which is correct advice, if you want an accurate test.

However, for many people, that is not an option. It is more important to see the dietary response than to continue eating gluten. That is a personal decision, and depends on a variety of factors.

There are a variety of people on this board, some with "sound" diagnoses, and some without. We treat everyone the same.

Best of luck,

Laura

[Juliet]

I don't know what it's like to have a child with celiac disease and who is also school age (but I will find out soon enough ) But one small piece of advice I was given has already helped me quite a bit when it comes to birthday parties. I make up a whole batch of unfrosted cupcakes (I like Pamela's Products chocolate cake mix when I have little time - you can't even tell they're gluten free), then freeze the ones that I don't use. I just keep them in freezer baags. When I know there's a birthday party coming up, the night before I pull it out then frost it (either homemade frosting or in a pinch I'll buy pre-made frosting that's gluten free - some Duncan Hines and Pillsbury icing is OK but you have to check the ingredients every time) just before going to the party. It's really made it quite a bit easier for me.

[rez]

I speak from experience. It is totally up to you, but I would try to get a diagnosis first and then you can always try the diet. My eight year old son has totally been through the same thing this past year. If you do the gluten free diet, problems can still arise, and then you don't know if he's been glutened, if it's not working, or if it's another food intolerance. Have your doctor run a tTG test and total IgA as soon as possible, maybe even tomorrow. If it's positive you'll have your answer and you won't have to do a gluten challenge if you don't want to. My son's tTG was still positive after being gluten free for 3 months. This is unusual and I would not risk it that long. Children have a long life ahead of them and it's nice to know for sure. I know there's a great possibility that the blood test could be negative and maybe you won't have a definitive answer at this point, but at least you've tried. There is also a good chance it may be positive. Many parents on this board have gone through the same thing. I totally feel for you. My son is having a biopsy on the 27th of this month. We had to do a gluten challenge. I know I may not get definite answers, but then I'll know I did everything I could for him. If it's negative and they rule out other conditions then I'll just follow dietary response. My fear is that he would follow the diet while he's under my roof and then give up on it when he becomes an adult. What if he really had it and didn't get immediate symptoms. Also, if you're on the diet for more than a year, it's difficult to get a diagnosis after that. Many people feel good just going on dietary response and that's great for them. Everyone's situation is different and you need to follow your gut instinct. Good luck, but just really think if you want or need that diagnosis before you get too far out of the gate. You have to be an advocate for your child, I found that out the hard way. Good luck.