Seeking Advice/insight

[concernedmamma]

Hello Experts!!! I come seeking your advice.

My son, Jacob (aged 5.5) was diagnosed in March via blood test and biopsy. He has always been an extremely busy, talkative, loud, 'out of control' boy. (yet at other times so gentle and loving!!) He appears to often not be able to stand still, sit still or 'focus'. Once he was diagnosed, and on the gluten-free diet for about 3-4 months we started to see an improvement in his ability to focus, be still and less 'outbursts'. Now, he is in kindergarten. We are starting to see more and more emotional outbursts from him. I am theorizing that these out bursts are a result of getting gluten. ( I have a really hard time knowing for sure- his physical symptoms are not clear either- he still has frequent, loose stools as well as complaining of tummy pain now- when he never did before diagnosis).

At his 6 month check, his blood work was back in the normal range- which I took to assume that we were doing a good job of eliminating all traces of gluten from his diet. Now I am not so sure. I have many questions.......

1) Does normal blood work indicate a complete removal of gluten from the diet? Or, can he still be getting traces?

2) Have you seen emotional outbursts/difficulty with gluten in your children? It is not constant, but 'temper tantrum like behaviour 'where he appears to be out of control, raging, angry and you cannot reason with him. At home we can usually see it coming on, at school they say they have no warning.

3)We did not go extreme with gluten free initially- meaning we continued with some main stream foods if they seemed ok on the ingredient list. I am now planning to go 'extreme'. Meaning, only foods labeled Gluten free, home made or in their natural state (fruits, veggies, meat). IF gluten is his issue, how long do you think it will take on this diet to see a difference?

I am open to all advice, insight, experience, suggestions, etc!!!!!

Thank you!

Momma to 4 fantastic children!

[FooGirlsMom]

Hi,

If you looking for a diet to help with behavior, you might consider a Gluten-free Casein-free diet. Gluten Free Casein Free means no gluten and no dairy products. There are numerous places on the web that will explain the diet if you Google it.

There are a number of people who have seen good results with stricter dietary changes than just Gluten Free. Some kids are highly allergic to other foods and react badly to them.

If you are interested in going gluten free (or any other type of restrictive diet) it's going to take a really high level of involvement to make sure you have certified gluten free foods or are eating whole foods that you know are not contaminated.

The good news is that there is a lot of support out there for moms like you. Many people with kids having autism use the Gluten-free Casein-free diet and it works.

Good luck,

FooGirlsMom

[dilettantesteph]

1) Negative blood tests don't mean no gluten in diet. My son tested negative after being badly glutened by sandwich crumbs in his school cafeteria. He was sick for three weeks. I tested negative after a year when I was still getting a lot of low level gluten contamination which I later removed from my diet with increased health.

2) Behavior problems can come from gluten but don't necessarily. Stomach pain and D with the behavior problems makes it more likely gluten.

3) Both my son and I are very sensitive to low levels of gluten. We needed a gluten free household and a whole foods diet.

Good luck.

[srall]

My 7 year old had the worst tantrums. Similar to how you describe your son. We needed her to be entirely gluten/dairy and corn free to see improvement. Behavior is smoothing out greatly. She's still a very spirited child, but definitely calming down. People and teachers who don't know she's on the diet have made comments about her appearance and behavior changing for the better. If I were you I'd probably keep my son entirely gluten free and maybe experiment with dairy and corn. My daughter after some corn syrupy candy is too much for anyone to handle.

[GlutenFreeManna]

Have you eliminated other sources of gluten besides food? For example playdough, paste, and other craft items that he would be playing with in school? All it takes is for him to get this on his hands and then eat his lunch or even just rub his eyes, touch his nose or put his fingers in his mouth. Many parents here provide gluten free playdough and snacks for their kids entire classes so that the environment is safe for their kids.

[cassP]

in my opinion, and from what ive been reading- you can still be getting glutened or having physical issues even when your numbers are in normal range- my numbers were pretty "normal" and low- and i was having quite a bit of intestinal & mental issues.

i read a recent study too- where they were testing these children for GLO something ??? something about gluten or wheat storing (i cant remember, i'd have to look for the link)... anyways those with Celiac or Gluten Intolerance tested HIGH for this GLo or whatever about 2 years before their TTG or Antigliadin showed positive. i think the medical community is still discovering so much about this disease that we dont know yet-

please make sure he is not getting glutened

[Mizzo]

Now that my dd is gluten free 8 months , whenever she gets a contamination it is just as bad as before going gluten-free. She has diarrhea for 2 days, belly pains and gets very emotional. Mad, sad, easily distracted etc..

Playdoh definitley caused 2 of her episodes, cross contamination at snack time was also a contributor.

For the teacher:

A tip, have you child moved to an end seat in her group if they are set up desk to desk or at tables. This immediately reduces the risk of contamination by 50% without segregating them.

All kids sitting next to and across from her must also be told to wash after snack, lunch and arts and crafts.

Make sure the washing of the table/desk does not mean pushing the crumbs towards her area, but away from it.

all these things really add up to safety.

At this age the kids can learn to say no to foods but are too young to be responsible for anything more. The teacher needs to be addressed and given some safety guidelines.

Your child will not be her/his last student with Celiac, ask them to considering it good training for the future.

good luck

[weluvgators]

1) Does normal blood work indicate a complete removal of gluten from the diet? Or, can he still be getting traces?

In our family's experience, normal blood work did not indicate complete removal of gluten. We still found ALOT of trace gluten in our diets, and removal of those trace glutens improved our health.

2) Have you seen emotional outbursts/difficulty with gluten in your children? It is not constant, but 'temper tantrum like behaviour 'where he appears to be out of control, raging, angry and you cannot reason with him. At home we can usually see it coming on, at school they say they have no warning.

YES, absolutely. One of our daughters starts to literally bounce off of the walls and speaks in a cartoony voice. She can quickly spiral into an unreachable place, and it can be exhausting to work through. In recovery, she can also bounce back to an eerily opposite place of delusional giddyness. Fortunately for us, these instances are not very rare, and we have not had any obvious gluten induced behavior issues at school.

3)We did not go extreme with gluten free initially- meaning we continued with some main stream foods if they seemed ok on the ingredient list. I am now planning to go 'extreme'. Meaning, only foods labeled Gluten free, home made or in their natural state (fruits, veggies, meat). IF gluten is his issue, how long do you think it will take on this diet to see a difference?

We find that maintaining a gluten free house is critical. We are also on a primarily whole foods diet of very carefully sourced foods. We maintain a gluten, dairy and soy free diet for our family. We have limited consumption of only carefully sourced corn. It has taken us years to get to this place in our diet, and we have largely followed our most super sensitive daughter. However, we now have three other family members that can provide incredibly helpful information about gluten contamination and avoidance, as there are now four of us with gluten hypersensitivity.

We have had to work very hard to make school a safer place for our children. Our second child in kindergarten was finally able to get the daily gluten filled snack removed, as it was necessary for her health. We have gotten further recommendations that her classroom must be gluten free, but the school is dragging their feet on the issue. They have reduced the gluten in the classroom significantly, but they still manage to get her often. We will continue to advocate for her. We were only able to make as much progress as we did for her this year because of her older sister's experiences last year. Her older sister is also being advised to have a gluten free classroom. We have also had to pull her out of the cafeteria and the gymnasium for the recess after lunch. We provide gluten free play dough for their entire classes, and our children use only their own art supplies. For reference, we are 4 1/2 years into the gluten free diet for our family.

We are working our way through Individual Health Care Plans to have in place for our children at school, and it is helping to have the accommodations needed for their safety in writing. We started this process by requesting a 504 evaluation for our child using a letter from our pediatrician instructing the school that a gluten free classroom is needed.

Good luck!