How To Begin W/kids?

[heymom45]

I have been with celiac most of my life (medically diagnosed in 1984). We have had 6 children. Through the years I have often mentioned the history, but since kids have not shown signs, doctors weren't concerned. My eldest child was diagnosed in her 20's. My youngest children are 6 and 8 years old and we now have a family dr attuned to my concerns!! My 6 yr old has been having constipation fairly regularly (no pun intended!) for a couple of months. Sometimes this is interfering with getting to the school bus on time!

 

The 8 yr old does not seem to have tummy issues. About a yr and a half ago, another dr diagnosed him with ADD (non-hyper). That dr was also very pushy about rx meds for ADD. I never felt my concerns about anxiety or sleep disorders (he's had trouble falling asleep since he was 18 mos old!!) or celiac disease had been given proper medical attention. The last time I told him I was having trouble wrapping my head around the explanation of why anxiety and sleep disorders were not ruled out he answer: YOU ARE NOT UNDERSTANDING IT BECAUSE YOU DON'T WANT TO. IF YOU WOULD JUST PUT HIM ON THE MEDICATION, IT WOULD SOLVE ALL THOSE PROBLEMS.  I was so in shock, I could not find words. My husband and I nodded our way through the rest of the conversation, then left the office, NEVER to return!

 

Anyway, through all of that, I did some homework on celiac disease (something I haven't done all these years!). As I'm understanding it, some of my child's issues could be symptoms of celiac disease. Like being disorganized, inattentive, requiring much redirection from teacher and tantrum behaviors at home. Even lately, I've noticed that when he gets a really good night of sleep, he's waking up with puffy raccoon eyes, that linger all day long!! He's 4' 2" & weighs about 50 lbs. I'm wondering if some of the behavior issues are from being tired??  We have had him in therapy for a few months and the therapist is not convinced of the ADD either. He does not display behaviors (symptoms) consistently. At times, he has gone many weeks improving organization, attentions and self-control, only to return again.  The family dr we are now seeing has agreed to test him as well, but said yesterday that he doesn't think he's as likely a candidate for celiac as his brother because of the absence of stomach issues. I did mention that I've learned of people with celiac disease that lack stomach issues.  He seems like a good dr and was not hesitant in having either of the boys tested. He even seemed to suggest he was going to take some time to learn more about some of the things I was saying!! (I think I like this one! ) 

 

I have no knowledge of these tests that many of you seem to be familiar with. When I was diagnosed, I was a kid, and my parents gave me "need to know info" only. Additionally, many of these tests done nowadays had not yet been developed. I was given every test to rule stuff out, the last was some kind of biopsy. THAT resulted in my diagnosis. My kids' dr has ordered a cbc cmp  free t4 tsh celiac disease panel for each of them. Following the tests, they have been referred to a peds gastroenterologist in Rockford, IL. (about an hour away!)

 

Since my only experience with celiac is my own, I'd like to have some input from parents who have been here. I've started introducing my husband to the notion that things will have to change in a major way at home, and school, if either of the boys is diagnosed. They won't have to go it alone like I have for so long!

[GottaSki]

Guidelines have indeed changed a great deal since you were diagnosed.

All of your children should be tested every three to five years (sooner if symptoms arise).

For your son with the recent panel....request written or electronic results before you head to the GI. Make sure the following were included to save time by having as much info for the GI to review:

Total Serum IgA

tTG both IgA and IgG

EMA IgA

DGP both IgA and IgG

Nutrient testing can be a help as well:

Minimally B12, B6, D, Iron and CMP (complete metabolic panel)

In addition my celiac doc runs:

B6, K, ferritin, copper and zinc.

On mobile right now but will add some links to the University of Chicago's Celiac Center that you may find useful.

Hang in there

[ArPlasma]

Hello! Welcome! I am very new to this all thing myself( I do not have Celiac disease and no history of it on my side of the family).

My DS1 who is 6 just had his biopsy done 2 weeks ago and we will know the results by the end of this week( finally!!!). He tested positive on the TTG- IgA and igg tests as well as EMA. He had been complaining about his tummy on a daily basis without much emphasis on it( very resilient little man).

He s been gluten-free for 2 weeks now and he has not had a tummy ache for almost as long. Only one episode of headache as well as opposed to almost daily. He has had some attention issues going on for a while, complained about pain in his knees and arms ( shooting pain), also one of his auditory nerve is not responding well with no obvious reason( clean MRI). After ruling out absence seizure, the neurologist had suggested a trial of ADD meds but when he heard the positive Celiac blood test, he suggested we wait at least 6 months to see if the attention issues improve. He seemed to think they might and from I understand/ have read so far there seem to be an association between malabsorption and attention deficit issues especially in children.

DS' s pediatrician did not think he was a likely candidate for Celiac( out of charts for growth) but I insisted based on my DH's side of family history. Turns out my husband got tested afterwards as well and he is positive on TTG tests.

Good luck with everything! I am sure others with more experience with dealing with Celiac disease with their children will chime in soon.

[simplemom]

I have no celiac info. My 7 yo son will be retested soon, because he wasn't eating enough gluten for the 1st test to be accurate. Within 2 days of my son eating wheat 2 meals/ day (prior ate wheat only a few times/week since I cook wheat free for my husband), my son got very very hyper. It was like he was on steroids. I homeschool, and couldn't even do his school lessons a couple days because he couldn't focus. He was very hyper and over emotional. I looked up about it online and found out gluten free helps ADD in some cases, so I have concluded gluten vs. ADD may be a problem with many children. I emailed the doctor about the hyperactivity, but I don't think he thinks it's gluten related. The MD just suggested I back off on the amount of wheat exposure. I started giving my son wheat just one meal/day, and my son has calmed down a lot. Also wanted to mention that my son had occasional night terrors from age 2-6. The doctor told us back then about being over tired being a cause, and my son had the night terrors more if he skipped a nap or went to bed later than usual. I always thought it was strange because night terrors are so rare. I recently googled night terrors and celiac, and found out several gluten intolerant people had nightmares, night terrors, or sleep problems prior to dx probably due to the body overworking to digest gluten. That makes sense to me.

Sorry I can't give you experienced info about celiac, and we're not convinced our son even has celiac. But wanted you to know the ADD like behaviors is a valid red flag for you to think celiac related, even if it turns out to not be the reason...especially with family history. In my recent research about celiac, I read that if one family member had celiac, all first degree relatives were supposed to get tested. Therefore, I don't understand why your 1st doctor (the one that was rude to you), wouldn't have tested for celiac based on family history alone.

[Cara in Boston]

I think I may have responded to another one of your posts, but I have experience with this as well.

 

My son had ZERO classic symptoms.  At age 5 his behavior took a sudden turn from "spirited" to horrible.  We were having tantrums over the slightest frustration, tantrums that would go on forever.  No consequences mattered, no rewards mattered, it was irrational and crazy.  It got to the point where we just stayed home . . . he was too unpredictable to go anywhere.  He was always in a bad mood. Things he once enjoyed were now "stupid".  He couldn't focus on his homework.  He never complained of not feeling well.

 

All the while, he was a perfect ANGEL at school.  They were shocked when I described what we were dealing with at home.

 

The doctor said this was not unusual at all.  Behavior is the #1 symptom in children.

 

Once gluten free, we had our son back.   If I had taken him to a behaviorist instead of our very knowledgeable pediatrician, I'm sure they would have diagnosed him with something and medicated him.  

 

Since he didn't feel well every single day, he didn't even know he didn't feel well . . .it was all he knew.

[nicolebeth]

 

 

All the while, he was a perfect ANGEL at school.  They were shocked when I described what we were dealing with at home.

 

***

 

Since he didn't feel well every single day, he didn't even know he didn't feel well . . .it was all he knew.

Both of those for my son. He doesn't technically have celiac because he's low IgA/low IgG (and had an incomplete biopsy at 5). By 7.5, he was often in a bad mood, irrationally so, and complained of stomach aches that doubled him over. He wasn't growing. "Perfect" at school.

 

As soon as he went gluten-free, he had no more pain. He never realized that his bowel movements were abnormal (huge, unformed) because that was what he'd always had. He doesn't even like the smell of gluten now. He's back on his curve. And, while he still has his moments, behavior-wise, things are much better. (And, when traveling over the summer, he had some gluten by mistake here-and-there, and we noticed his behavior was worse.) I think gluten takes the kid's regular behavior and exacerbates the negatives. My kid is always going to be someone who wants things to happen however he visualizes them in his mind. He may get angry or tear up with frustration if it's not the case. Off gluten, however, I usually can reason with him, or give him a hug. On gluten, he is inconsolable and irrational over (what we feel are) minimal things (like, whether he's sitting in the middle or at the window--and his preference would change overnight).

 

We are trying my daughter gluten-free; she has mild ADD. She's still fidgety, though less (and sucks her thumb much less), and still seems to be disorganized (but there is more focus). Also, her keratosis pilaris, present since she was a baby, is essentially gone. She anxiously awaits Feb. break to go back on gluten. I suspect she will feel a bit unwell (and will realize that this is better).

 

Good luck, @heymom45!