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Member Since 30 Jan 2013
Offline Last Active Mar 27 2013 04:53 PM

Posts I've Made

In Topic: High Alt And Ast Even After Gluten Free For 6 Months

24 March 2013 - 06:20 AM

Our middle child (of 3) was our family's canary. We have been gluten free for almost 7 years now, and it has been a long road for our family. We had a very difficult time understanding the severity of our gluten issues and have found the best guidance to come from those that are "Super Sensitive". We quickly realised that the severity of our middle child's condition required a gluten free home. We also have had to implement very strict protocols for care, school and those that enter our home after eating gluten.
We have worked with doctors that have tried to reduce our super sensitivity, but the most effective protocols for our family remain strict eliminations of gluten. I am happy to share more details of our story if you want.
You haven't mentioned the status of your home related to gluten, and I wonder if he continues to be contaminated from his environment. There is a rather recent posting related to gluten contamination and refractory celiac which may be interesting to you. I hope that you are able to figure out more information to help your son recover his health. We have had several complications related to our celiac and severe gluten hypersensitivity and have had to endure severe complications due to our lack of understanding of the effects of chronic gluten exposure that is outside the "normal" tolerance levels for a "standard" celiac. I wish you well in the journey and share that our family has had to deal with a lot of testing, investigation and interrogation for understanding the extent of our complications. I hope that you find relief and resolution quickly. I understand how exhausting and scary the rounds of investigation for complications can be. Big hugs from another celiac mama!

We have three children, two are adopted and one is our biological child. Our biological child is the one with celiac.

Two weeks ago, his AST and ALT were retested and they were getting very close to normal. I knew the enzymes were getting better because his poop was starting to actually look normal. Two days ago he started having classic celiac symptoms again: diarrhea, white poop, bad rash, tummy ache. I'm sure if they tested his liver enzymes, they'd be high again.

I have noticed one thing, which is that he has celiac symptoms whenever they have corn for lunch at daycare, so we need to cut out corn. The other piece of this puzzle is that he was on an antibiotic for thirty days due to a chronic sinus infection. His celiac symptoms improved dramatically while on the antibiotic. Now, we are back with white poop, diarrhea, rash, etc.

Our house is separated into shelves and cupboards that are gluten-containing and gluten free. All our evening meals are gluten free, then I save the leftovers for our celiac child to take to daycare the next day. Breakfast is usually an Udi's muffin and banana.

We're frustrated, because the pediatric gastro sent us on our way after doing the testing and said, "I'm not even sure he has celiac." When I pushed back and said, "oh good, then I guess we can go back to eating gluten," he responded with, "I would keep him gluten free."

So, we have all these celiac symptoms, we have one doctor's diagnosis and instructions to keep him gluten free, but a boatload of more questions as to the recurring symptoms.

I think we will go ahead and take him to Mayo. Any one else take their child there?

In Topic: Instant Behavior Change In Son After Going Gluten Free.

04 March 2013 - 09:04 AM

Celiac runs in my husband's family.  With our son, who was diagnosed early (right around 13-14 months) his behavior was clearly indicative of pain (inconsolable, coudn't get comfortable, waking up in the middle of the night crying in pain); however, my sister in law has a child with autism and celiac.  Her experience was that her son's behavior wasn't obviously pain-related, but his motor coordination, speech and ability to socialize dramatically improved on a gluten free and dairy free diet. 


She isn't as picky as me about keeping seperate utensils and other cross contamination issues and I don't think her son's reactions to being accidentally glutened are as dramatic as we see in our son. 

In Topic: Sharing Good News

04 March 2013 - 08:00 AM

Yay! My little guy was diagnosed at 14 months and he's in the 97% for height and weight.  Gluten free doesn't have to mean not thriving. 

In Topic: 22 Month Old Diagnosed With Celiac

03 March 2013 - 09:00 AM

I have a 19 month old who was diagnosed at 14 months.  When we first found out, we cleaned out the fridge and cupboards and separated them into "regular" and "gluten free" spaces.  The gluten free shelves are the shelves that are within reach of our child with celiac.  Any refridgerated gluten products are stored up high or in our second fridge in the basement, which is a lot less accessible than the main kitchen fridge. 


Our policy is that our main meal at supper time is totally gluten free.  That decreases the risk of cross contamination.  Breakfast for our celiac kid is usually fruit and a gluten free muffin or yogurt.  Lunch during the week is served at daycare, but is usually leftovers from our gluten free supper the night before. 


I find that making the main meal gluten free is just easier, because then I have leftovers for his lunch and I know it's not contaminated.

In Topic: Ex Husband Not Supportive

03 March 2013 - 08:37 AM

My practice area isn't full-time family law, but I've handled a couple of cases where the child had medical needs.  It's really important to have a confirmed diagnosis with doctor's instruction.  If he doesn't comply with doctor's orders, then consult your attorney. 


For some parents (on both sides of the fence), controlling a child's diet is perceived as an attempt by the other parent to extend "control" of the children into the reach of the other parent's parenting time. 


Having gluten free diets becoming so popular is both a curse and a blessing.  On one hand, there are a lot more companies getting into the gluten free market and there are more choices available.  On the other hand, a lot of people think it's a fad and not a medical necessity. 

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