Rate this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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 :)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


 

 

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   3 Members, 0 Anonymous, 268 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au