Does My Son Appear To Have celiac disease?

[shayre]

Hi. I have a 5 yr old son, who to me, has always had some slightly mysterious issues. He has been scoped with a negative biopsy, and blood tests are negative too. I have celiac disease. He has one gene for it, but the test did not assess his risk like it did mine. He is highly lactose intolerant. That could be genetic, as I am and a lot of my family ...or it could be an early sign of celiac disease like me. He had some minor allergies show up on a blood test for eggs and dairy, but they referred us to get another skin allergy test. The first time was a complete nightmare, and I am not ready to put him through that again.

He reacts badly to nitrates and food dyes. He becomes hyper and unfocused, listening skills go down the toilet and he can get very emotionally unstable...crying about everything. We figured out that much when he was only 1, so he has been eating mostly organic...even before then. Now that he is older, and wants to eat what his friends eat...it's allowed a little more. We just made him go a couple of weeks without any chemicals again, and he said that he felt joyful. He had appeared to have a little sadness underneath the surface lately. I found out that the preschool that he attends only 3 half days per week, wasn't giving him the organic snacks that I brought for him. He had been eating fishy crackers, cookies, jello etc.

We give him organic vitamins from Whole Foods. It is across a couple of towns to get there, so there have been occasions where we have run out of them. If it has taken us 4-5 days or so to make it to the store to buy them...he has already begun to get emotional. That tells me that there must be a vitamin deficiency. I asked my son's GI doc to do ALL of the testing and blood draws that she could do while he was under for the scope. I am upset, because she only did a couple of main vitamin levels...not all like I expected. I don't know if I am ready to start putting him through blood draws. He has also been have reflux issues.

He has also always been on the short side. He looks very healthy and solid, but has been at about the 6th percentile for height...down from 14% when he was born. Now my hubby and I are both short, but with tall people in our families. So is it genetics, or celiac disease?

I don't want to put him on a gluten-free diet if he doesn't have it, because it is so limiting. He is in sports and he needs the grains and nutrition and vitamins from them. He is also a very picky eater, that has frustrated me to no end!

Now I have another son who is 23 months old. He has had severe acid reflux, since he was born. He does well on Prilosec. However, he is cranky and demading a lot. He still can't communicate his feelings yet, so we have always wondered...does he feel bad...or is this just his personality...or something that he's eating? He has been scoped twice, and had all of the same tests as my other son during the scope. He didn't show any lactose intolerance or allergies. His biopsy and tests were negative for celiac disease. He also has one gene for celiac disease, but again his risk was not assessed.

Does this sound familiar to anyone, or would I really know if my sons had celiac disease. Do I trust their doctor...and just keep an eye on it?

[mushroom]

It is always difficult with small children who test negative, since the testing in young ones is not very reliable, both the blood tests and the scopes. You must just trust your motherly instincts at this point and keep a close watch, I think.

You say you do not want to take the children gluten free, but I was just reading your post where you were having problems yourself staying gluten free because of gluten in the house. If your children have the gene and are exhibiting symptoms that make you concerned about them, you could certainly do a two- or three-month trial of taking the whole house gluten freeto see if it made any difference. You would have to get your husband's cooperation on this of course; he could still have gluten outside the house but make your house a gluten free zone. It would certainly help with your cross-contamination issues, and it might help define whether or not your children are having gluten issues.

[MacieMay]

My daughter just turned 2 and tested negative (two celiac panels, biopsy and gene). Her GI Dr. diagnosed her with a gluten intolerance due to a positive response to the diet. According to what I've read on here testing in small children is unreliable. My daughter was also lactose intolerant.

Both of your sons could be Celiac or a have a gluten-intolerance. Why not have them try the diet and see how they do.

Also, I find with my kids, calorie intake directly effects their behavior. Today my daughter did not eat any of her snacks I packed for her for school and only ate half of her PB and J sandwich (I guess they gave them candy at snack because it was St. Patty's day). Anyway, she was a MESS when she got home. Crying at the drop of the hat. She was an emotional wreck. She is 6 and is too old to be acting like that. I knew right away something was not right. I sat her at the table and she ate and ate and ate and ate. She was STARVING!! They need protien and healthy fats, at least mine do, crackers and carbs just don't do it for them.

I hope this helps

[Kimmik95]

My son is 6 and was recently diagnosed with celiac disease. Although it's nice to actually have the diagnosis, what's nicer is the fact that he feels so good eating gluten free. Personally, in your situation, I would take your kids gluten free and see how it goes. If they improve, then does it really matter if they have celiac disease or just an intolerance or sensitivity? With a little research, and especially having a Whole Foods available, I would think you could find all the foods you need to keep your son healthy while he's active. My son is very active as well and I have no problem keeping him filled up with food. In fact, because he's actually absorbing his food now and feels good, it's easier! He doesn't particularly like any of the gluten-free substitute foods. He's actually cut out most food that contain gluten before he was ever diagnosed. He stopped eating spaghetti, breads, and even pizza. After 4 months of gluten-free, he's just now starting to eat some gluten-free pizza and pasta. Most of his diet is meat, potato/rice, and vegetables. He's not dairy intolerant though, which makes that easy. He drinks ensure as a subliment to help him continue to gain weight. Chris had fallen from 75% for height and 25% for weight to 15% for height and 3% for weight within a year.

Hi. I have a 5 yr old son, who to me, has always had some slightly mysterious issues. He has been scoped with a negative biopsy, and blood tests are negative too. I have celiac disease. He has one gene for it, but the test did not assess his risk like it did mine. He is highly lactose intolerant. That could be genetic, as I am and a lot of my family ...or it could be an early sign of celiac disease like me. He had some minor allergies show up on a blood test for eggs and dairy, but they referred us to get another skin allergy test. The first time was a complete nightmare, and I am not ready to put him through that again.

He reacts badly to nitrates and food dyes. He becomes hyper and unfocused, listening skills go down the toilet and he can get very emotionally unstable...crying about everything. We figured out that much when he was only 1, so he has been eating mostly organic...even before then. Now that he is older, and wants to eat what his friends eat...it's allowed a little more. We just made him go a couple of weeks without any chemicals again, and he said that he felt joyful. He had appeared to have a little sadness underneath the surface lately. I found out that the preschool that he attends only 3 half days per week, wasn't giving him the organic snacks that I brought for him. He had been eating fishy crackers, cookies, jello etc.

We give him organic vitamins from Whole Foods. It is across a couple of towns to get there, so there have been occasions where we have run out of them. If it has taken us 4-5 days or so to make it to the store to buy them...he has already begun to get emotional. That tells me that there must be a vitamin deficiency. I asked my son's GI doc to do ALL of the testing and blood draws that she could do while he was under for the scope. I am upset, because she only did a couple of main vitamin levels...not all like I expected. I don't know if I am ready to start putting him through blood draws. He has also been have reflux issues.

He has also always been on the short side. He looks very healthy and solid, but has been at about the 6th percentile for height...down from 14% when he was born. Now my hubby and I are both short, but with tall people in our families. So is it genetics, or celiac disease?

I don't want to put him on a gluten-free diet if he doesn't have it, because it is so limiting. He is in sports and he needs the grains and nutrition and vitamins from them. He is also a very picky eater, that has frustrated me to no end!

Now I have another son who is 23 months old. He has had severe acid reflux, since he was born. He does well on Prilosec. However, he is cranky and demading a lot. He still can't communicate his feelings yet, so we have always wondered...does he feel bad...or is this just his personality...or something that he's eating? He has been scoped twice, and had all of the same tests as my other son during the scope. He didn't show any lactose intolerance or allergies. His biopsy and tests were negative for celiac disease. He also has one gene for celiac disease, but again his risk was not assessed.

Does this sound familiar to anyone, or would I really know if my sons had celiac disease. Do I trust their doctor...and just keep an eye on it?

[shayre]

MacieMay, what was your clue to your kid's having issues with no diagnoses? Just behavioral? Kimmick95, the % drop is a huge indicator, and not wanting to eat carbs. Was there anything else that clued you in? Did your kids have acid reflux or chemical sensitivities? Did they have vitamin deficiencies? My son says that he feels fine...all of the time. My concern is that, like me, he's just used to it...and doesn't know any better. I know that he is super gassy when he has lactose, but yet he still insists that he feels fine.

[Kimmik95]

Honestly, I had no idea what celiac disease was. I took my son in to his pediatrian because he was having joint pain in his knees every night. I had thought it was growing pains until my mom pointed out that he wasn't growing. The pediatrician sent him for some bloodwork, which came back for some markers for RA, so we went to a pediatric RA and she evaluated him and determined he didn't have arthritis, but wanted to test him for celiac disease and thydroid issues. I had never heard of celiac disease, but after we left, I researched it. He had markers come back and we went to the pediatric GI who wanted to do an endo. At that point, his symptoms were no growth, joint pain, floating bm, and occassional stomach pains. When the GI doctor did the endo, he said he saw no damage, but the biopsy came back positive. I think Christopher's autoimmune reaction to gluten is very mild compared to most people I've talked to.

Looking back, thre might be other things. Chris had alot going on the previous year. We were adjusting his ADHD medications and I was worried they were causing him some depression. He was also, it turns out the target of severe bullying in his Kindergarten class (which is what I think kicked off the celiac disease), which caused him to be depressed and withdrawn. However, I think to a degree, he was also just not feeling good. He very often just wanted to hang out over the summer and watch TV or play his DS. He wasn't really interested in playing with any other kids, even his cousins, and he just really wasn't his happy go lucky self.

Since starting him gluten-free, the biggest difference we see is his attitude. He laughs and smiles and giggles ALL the time again. God did I miss that! I know almost immediately when he has gluten because he gets very irritable as his first reaction.

Good luck. It's so hard with kids because they still can't express themselves to where we can get it sometimes. It's hard to interpret.

MacieMay, what was your clue to your kid's having issues with no diagnoses? Just behavioral? Kimmick95, the % drop is a huge indicator, and not wanting to eat carbs. Was there anything else that clued you in? Did your kids have acid reflux or chemical sensitivities? Did they have vitamin deficiencies? My son says that he feels fine...all of the time. My concern is that, like me, he's just used to it...and doesn't know any better. I know that he is super gassy when he has lactose, but yet he still insists that he feels fine.

[mushroom]

Looking back, thre might be other things. Chris had alot going on the previous year. We were adjusting his ADHD medications and I was worried they were causing him some depression. He was also, it turns out the target of severe bullying in his Kindergarten class (which is what I think kicked off the celiac disease), which caused him to be depressed and withdrawn. However, I think to a degree, he was also just not feeling good. He very often just wanted to hang out over the summer and watch TV or play his DS. He wasn't really interested in playing with any other kids, even his cousins, and he just really wasn't his happy go lucky self.

Since starting him gluten-free, the biggest difference we see is his attitude. He laughs and smiles and giggles ALL the time again. God did I miss that! I know almost immediately when he has gluten because he gets very irritable as his first reaction.

I am so glad you have got back the little boy you know, the happy, giggling one The emotional response to the bullying was undoubtedly what kicked the celiac into high gear - bullying is extremely stressful. Gluten can cause ADHD and depression, and once you are depressed you lose interest in things. As adults we try to push through this lack of interest but children just respond naturally. I would be interested if you have been able to lower his ADHD meds now that he is off gluten?

[T.H.]

Just in re: to picky eaters - curiously, that has actually turned out to be one of my kids' symptoms! My son had a negative blood test, no scoping done. But 2 of the four of us were gluten free, and he was very small, lots of emotional control issues, and had a bloated tummy, so we tried it with him, too.

At this point, if he accidentally gets gluten, he'll get extremely picky about his eating for about 24-48 hours, and then it passes. He'll be starving but refuse to eat anything but some junk food he'll be craving, big tantrums and yelling and 'I'm staaaaaaarving!!!!' It's very strange to see, because then in a couple days, he'll eat the exact same food, and you'll ask him if he likes it.

He'll usually say, in a very calm voice, no, but I was hungry so I'm eating it anyway.

Like a totally different kid. Really, really surprising change.

Also, with him? After he'd been gluten free for nearly a year, we did a gluten challenge. He got bloated again, his emotions got progressively worse and more out of control, and he started having foul and frequent gassiness. It went away again when we took the gluten away. I don't know if it was a false negative or if he is just gluten intolerant, but even our test was only about 1 piece of bread a day and that was enough to zap him, so we're just keeping everybody off it, now.