Shall I Insist On More Testing?!

[Kate35]

I just had a physical with my 10 yo son and it appears that he has not ganed even a pound in one year!!!! He grew one inch which my pediatrician thinks is completely normal. She told me to increase his calorie intake and add oil and butter to every meal...Now, because I am celiac, I did persuade her to have him tested last year and h was egatve. It was a compete celiac panel. She said you either have celiac r you don't, no need to get tested again and assured him that his poor f weight gain has to do with his Level of activity(true, he is ver active and he is also a picky eater). Also, He has been seeing a chiropractor for his mysterious join pain for year now. No explanation given...shall I insist on mor testing?...

TIA

[frieze]

I just had a physical with my 10 yo son and it appears that he has not ganed even a pound in one year!!!! He grew one inch which my pediatrician thinks is completely normal. She told me to increase his calorie intake and add oil and butter to every meal...Now, because I am celiac, I did persuade her to have him tested last year and h was egatve. It was a compete celiac panel. She said you either have celiac r you don't, no need to get tested again and assured him that his poor f weight gain has to do with his Level of activity(true, he is ver active and he is also a picky eater). Also, He has been seeing a chiropractor for his mysterious join pain for year now. No explanation given...shall I insist on mor testing?...

TIA

Your pediatrician is mistaken, you can develope celiac at any time. he needs to be retested, asap.

[Roda]

Yes, ask for him to be retested! My youngest son tested negative at the time of my diagnosis. Two years later he had positive blood work. My oldest son has never tested positive on blood work and had has been tested annually since my diagnosis. He even had a negative scope. Because of the huge improvements I had seen in his little brother after going gluten free, it made me rethink trialing my oldest. He also had daily symptoms of nausea, reflux and stomach pain/bloating/gas and was falling on his growth curve. (he was small to begin with). After his scope he went gluten free. Within a month all of his symptoms were gone and he even gained 6 pounds! Three months later he did challenge gluten and became symptomatic. He was almost 11 at the time and I laid out all the pros and cons of being gluten free(no celiac diagnosis obviously). He said it wasn't that bad and wanted to stay gluten free because he felt better and was growing. It's been a little over a year now. He does get symptomatic when he gets glutenened with stomach pain, gas and bloating. Pretty tell tale that gluten is bad for him.

[kb27]

We have one son with celiac, and one who tested negative and has no symptoms. Our GI specifically said that if kid #2 ever starts growing slowly, etc. to insist on having him tested again because of the family history of celiac. Don't let a doctor tell you it's normal.

You can develop celiac at any time. You should definitely retest him.

[nvsmom]

Hypothyroidism also has the same symptoms as celiac. TSH and TPO Ab should be checked to see if his thyroid is slow or under autoimmune attack.

If he is eating gluten, you should get him retested. If he has nonceliac gluten intolerance (NCGI) that could affect his overall health and you'll never get a positive blood test for that. Have you considered making him gluten-free regardless of the testing?

My kids tested negative but I believe my oldest (9 years old) has some sort of NCGI or he had a false negative. He gets stomach pains, headaches and his growth has slowed significantly; he's gone from taller than most friends to shorter than his peers over the last few years. It's too early to tell if it's a food issue as he just went gluten-free.

Good luck. I hope you find answers soon.

[Kate35]

Thank you for your replies! I got more info here than I got from my doctor...

[1974girl]

I second everyone. First have his thyroid tested. My dd developed low thyroid at 7 and didn't grow for a year. Our pediatrician had thyroid cancer herself so she could spot a problem. I just mentioned that I thought she was shorter than she should be. They found the thyroid. She tested negative to celiac at that time and then positive 4 years later. The genes can be triggered at anytime.

[Kate35]

I will definitely have his thyroid checked... Interesting... It seems like most kids whose parent is a celiac develop it at some point if their lives... Or am I mistaken? My GI assured me that chances f them developing it are very slim... Like less than 10%. Now after reading your posts, it seems like almost 100%.

[Cara in Boston]

One of my boys and I have celiac. My other son (now 10) was tested at the time of our diagnosis (2 years ago) and was found to be negative. He had no symptoms, but his teeth seemed to be streaky and discolored. Our doctor at the celiac clinic at Children's Hospital decided to do an endoscopy even though his blood tests were all normal. It was negative. Our instructions are to have him tested every two years regardless of symptoms and sooner if he has any symptoms at all. He just had his annual physical, and like your son, he didn't grow as much as expected and only put on one pound. Clothes that fit him last year are now too big and he has even resorted to wearing his 7 year old brothers swim trunks because his are falling down.

He has no other symptoms at all and we are just waiting to hear back from the doctor to see if she wants to test him again, or if this is just normal 10-year-old-boy-stuff.

Bottom line, your other children could develop celiac disease at any time in their life, or not at all. There may be no symptoms at all. If there are symptoms and the testing is still negative, I would still take that child gluten free. Why wait for damage?

Cara

[Kate35]

I wanted to give you a quick update... I fed my son complete gluten-free diet for a week and he gained 4lbs... I don't know how to rect... He had a completely normal celiac panel test a little less than a year ago... Does it mean he is a celiac if he responded to the diet? Could he be just sensitive? I cannot stand an idea of him going through what I did... Appreciate your thoughts! TIA!!!!

[GottaSki]

It seems like most kids whose parent is a celiac develop it at some point if their lives... Or am I mistaken? My GI assured me that chances f them developing it are very slim... Like less than 10%. Now after reading your posts, it seems like almost 100%.

I believe the current number for first degree relatives (siblings, children) of someone diagnosed with Celiac Disease is 1 in 22. Although my kids are 3 for 3 so we tend to follow your theory

[GottaSki]

I wanted to give you a quick update... I fed my son complete gluten-free diet for a week and he gained 4lbs... I don't know how to rect... He had a completely normal celiac panel test a little less than a year ago... Does it mean he is a celiac if he responded to the diet? Could he be just sensitive? I cannot stand an idea of him going through what I did... Appreciate your thoughts! TIA!!!!

Certainly does indicate gluten may be the problem. I agree with Cara - negative with symptoms - remove gluten and watch him improve

[nvsmom]

Wow. Congrats to your son. He could very well be a celiac. I would stick with the diet and see if it continues.

[Kate35]

Yes, but I feel so sad... Thinking how he will go through teenage years... College? Dating? I am just driving myself insane. On one hand, I am happy that he is feeling better, but this diagnosis entails so much... I can handle it, but the idea of my kid having this... I cannot sleep, cannot eat... Anybody going through this?

[GottaSki]

Yes, but I feel so sad... Thinking how he will go through teenage years... College? Dating? I am just driving myself insane. On one hand, I am happy that he is feeling better, but this diagnosis entails so much... I can handle it, but the idea of my kid having this... I cannot sleep, cannot eat... Anybody going through this?

Mom's worry.

I can tell you that I was diagnosed when my children were teens and young adult. They have all had much improved health by living gluten-free which enables them to enjoy their teens, college experience and beyond. They all had much different symptoms - some very serious and their mom (me) became very, very ill from not being diagnosed - we all feel fortunate to know how to improve our health. The oldest has had two children with symptoms of Celiac that we were able to recognize while they were babies - so we are thankful.

All that being said - personally I went thru a very tough time when I was diagnosed and realized I had passed the genes to my kids. Give it time and try to focus on your son's improved health.

[Cara in Boston]

I think the younger you are when you are developing your future eating habits, the better. My younger son (7) and I were both diagnosed at the same time. I had a MUCH harder time dealing with the "loss" then he did. I would stress (for him) about every play date and birthday party because I didn't want him to feel left out or different. After a short while, he is used to it and it is all he knows. Last summer, I was packing him a gluten free pizza for a party he was attending at a bowling alley. I was going on and on about how his pizza wasn't going to smell as delicious as the one they are going to serve at the party, etc. etc. (just trying to prepare him for the inevitable disappointment) and he said, "Mom, stop worrying. It's only food. I'm not going to the party for the food." Wise boy. I wish I grew up thinking about food that way.

Eating gluten free has made us much more aware of what we are eating. The entire family is much healthier now.

Your son has a bright, happy future ahead. I've seen TONS of changes just since we were diagnosed (2 years) in the products available, awareness, etc. Things just keep getting better and better.

Cara

[Roda]

After my 7 year old was diagnosed at 5 I developed a case of the guilties. He had had issues as a baby that in hindsite were celiac symptoms. It was because of my gluten lite diet(I didn't realize it at the time and I didn't even know anything about celiac) when I was breastfeeding him, that I eventually found out about my gluten problem. All I knew is that when he or I ate certain foods he would react horribly. He was 3 when I was diagnosed with celiac and the first thing I did was have him and his brother blood tested. When they were both negative(he was not symptomatic), I took a sigh of relief and they continued to eat a regular gluten diet. So I guess the point I'm trying to convey is that you can't look back and wonder about the would of's, could of's and should of's. You do the best you can with the information and knowledge you have at the time.

I do understand feeling bad about it. I actually took it worse when he was diagnosed than when I was. I didn't have to deal with this as a kid like him. But it does get better and before long he will be well adjusted, happy and healthy!