celiac and autism

***I'm reposting my facebook rant here, should anyone need to bookmark it for information***

FINALLY!!! I have said this for YEARS! Real research is coming out saying, "hey guess what, we're probably misdiagnosing a lot of kids with autism and add/adhd who really have Celiac!!" March/April 2013 Issue of Simply Gluten Free Magazine, by Dr. Vikki Peterson of www.healthnowmedical.com authored the article. There are multiple studies listed but the main thought is, "Research shows the actual condition creating ADHD or autism-like symptoms is factually the presence of celiac disease or gluten sensitivity. In other words, gluten intolerance can so mimic ADHD and autism that a misdiagnosis can occur."

We've come a long way in progress for children with Autism and spectrum disorders. But we still have a long way to go. What if we are missing a huge chunk of children, who really only need the GF diet? Maybe they don't need countless hours of therapy or invasive testing and evaluation? What if they really just need the GF diet?? I'm not saying every child diagnosed with Autism is really Celiac. But why not test? Why not TRY the GF diet, because if it's Celiac, it's going to work fast.

We've long known for years the connection of leaky gut to autism, the gut brain connection. I've said for years there will one day be such a thing as Celiac Induced Autism. Eli is living proof, once gluten was removed, he developed completely normal. If I reintroduce it, he completely regresses. This is not a coincidence. This is a connection, a REASON he was so developmentally delayed and so fast (within months of introducing gluten at age 12 mos). If you know a child with autism, have a child with autism, TRY THE DIET! IF you have a child with ADD, ADHD, why not TRY the diet? Versus incredibly toxic meds for life? Why not try a natural change of eating?

Here are the things I commonly hear about GF diet: "My child is so picky already! What will he eat?" Yes, guess what, my child ate NOTHING. It was the biggest thing we battled with. It took years but he eats now. Guess what, if they have autism, they will likely be picky whether you eat GF or not. So let them be picky with GF food.

"Gluten free food is so expensive! What will we do?" How much do you spend on docs? Therapies? How much does your MENTAL ANGUISH cost you at your child driving you insane? Isn't the price of food worth that? Shop around, buy in bulk, buy with other GF people! Join a Celiac support group or Autism support group and buy in bulk with them! Each foods NATURALLY GF like fruits, veggies, meats, rice, etc.

"What if it doesn't work?" It might not. It really, truly might not. If your child has Celiac, whether with or without and ASD diagnosis, the GF diet will heal their body and help their mind. If your child does NOT have Celiac, but DOES have Autism, it MAY help. Many kids with autism but who are not Celiac, do benefit from the GF (and often Casein free diet). But many do not. We don't know all the whys and hows. But why not TRY!?

 I don't say all this to minimize the reality that there are far too many children with Autism around. I say these things to encourage anyone to TRY the GF diet if you or someone you love may be a good candidate for it. I say these things to encourage you to think outside the physician imposed box and ponder, "What's really good for my child?" What worked for us, may not work for you. But what IF, what IF, your child with Autism is really just a severe case of Celiac. That one diet change could alter his or her life FOREVER. Because guess what, the GF diet is not a prison sentence. It's not the END of eating certain things, it's the beginning of health, energy, vibrance and a new life. Yes, it stinks to not always eat what others eat, but there are SO many good choices out there and so much improvement in the GF lifestyle, it's NOT THAT BAD!

Eating gluten free versus a lifetime of the hell I went though pre-diagnosis of Celiac? Hands down, GF food all the way.

You will never, ever know, until you try.

~~Amy

***These are MY Opinions! While I do chair the local Celiac Sprue Association, these are my personal thoughts. Please feel free to ask me anything about Celiac, even the gross stuff, and please refer to http://www.csaceliacs.info/ for more information about Celiac Disease.***

Duct Tape Waterbed...Pinterest Idea on Crack..

Time for another Pinterest inspired activity. I swear Pinterest will make me fat and drunk but a crafty, fun mom! The original post is here: http://playathomemom3.blogspot.com/2012/02/redneck-waterbed.html, which is a really cool blog about sensory, play and having fun with your kids.

So, we splurged on the plastic sheeting (18.00 for two, you use only one at a time.) and some more duct tape and turned on the water!

Fold over the 15x25 3.5 mil plastic sheeting so its folded in half and duct tape the three open sides. Now this SOUNDS super easy. It's not. Its a pain in the arse, particularly if you decide to do it alone, without grown up assistance, outside in 90 degree heat. Once I moved the process inside, put on a movie for the boys, and got comfy on the floor, it got easier.

Once you get most of the 3 sides taped up, head outside, insert a hose into an open space, and tape it closed around the hose. Turn on water, mix a frosty cold beverage and wait. And wait, wait, wait, because it takes a REALLY long time to fill up a huge water bed. Check your tape for leaks and get tipsy on your blueberry vodka lemonade.

Once the bed fills up, remove the hose and force your children on it. Why force? Because despite the fact that the older child BEGGED you to make this, he's inside boycotting all outside activities and watching a movie because you implemented a no video game policy. So you let the little one enjoy it for awhile solo.

That's my picky eater....can you tell from the skinny body? Sigh. Feel free to come make him eat...I dare you..come on over.

Then add a hose and force the older child out to have some non electronic fun. Then sit back, drink more, and watch as they realize it IS fun outside and they WILL NOT die from mommy's ideas.

What's awesome about adding a hose is this turns the waterbed into THE.BEST.SLIP.N.SLIDE.EVER. Because not only is it squishy and jumpable, it's now SLIPPERY. You cannot resist the awesomesauce.

I don't know why it's so hard to get my older son's photograph...he either makes a weird face or turns right before I snap. I think it's a conspiracy.

And this is why I love my husband. Because after a hard day turning wrenches, he is willing to throw on his bathing suit and water slide in the front yard without questioning WHY there is a giant waterbed in his front yard.

It was a ton of fun. I'm glad we have one more plastic sheet left, which we'll use again after the front grass grows back from our two days of watersliding. We made such a mess that the water ran into the neighbors side of the yard, and he had to put on boots just to go fetch his trashcan. But he's such an awesome neighbor, he just smiled, and after I apologized for the water, he replied, "Kids have to have fun, it's hot out!" I love retired, grandpa neighbors. (Did I mention he's done plumbing work for me? I'm going to miss him when we finally sell our house.)

I bet we were a site for people passing by, and I know I probably turned into Scary Mommy once or twice on this day but I hope they remember the sliding and the water and the fun.

I know I will.

Summer Fun--Rad Rainbow Rice

School is literally  just around the corner, but I thought I'd make my boys some rainbow rice I've been seeing all over Pinterest. Not that I'm new to rice therapy bins, sensory boxes, or whatever you want to call them. I used them as a preschool teacher and with my second child as part of his autism therapy.

But I'd never bothered to color it. (So I was lazy, yeah.)
You can find more tutorials on the net but basically, I did this:

Put parchment paper or aluminum foil on cookie sheets and set the oven to 175 degrees.

Take rubbing alcohol or vinegar and put 1-2 tablespoons of it with desired amount of food coloring in a glass jar. (I used mason jars). Pour 1.5-2.5 cups of white uncooked rice in the jar. (how much you add depends on size of your jar). Shake vigorously. This is a great activity for kids, just take care with the jar....dropping the jar could be a not so fun experience.

Add more food coloring if you need. Pour the colored rice on the covered cookie sheet. Spread it around with a spoon to get a thin layer (which will dry faster.) Put the sheet of rice in the over for about 15 minutes to dry. Check it and put it back in for 5-10 minutes if need be until the rice is dry.

Once the rice is dried and cooled, I spooned some of it into smaller mason jars for safe keeping because I know I will vacuum up most of the rice soon.

Repeat this for every color you want.

My fave color:

I put the rest in a plastic tub for the boys to play with. Add in spoons, cups, siphons, animals, trucks, cars, bugs, and more for some fun sensory time! Encourage your child to fill cups, measure, level off, pour, hide animals, and more!

\

~~Enjoy!

Eli's Story

I thought I would take this opportunity to tell my son's story. Of course it is not complete, but hopefully will explain where we are right now.

Eli was born Jan. 23, 2008 (a very strategically planned winter baby--I was NOT evacuating 9 mos pregnant again!) and a welcome addition to our family that also includes big brother Harrison, now age 4. The pregnancy was your typical normal pregnancy and his birth was actually enjoyable, so different from Harrison's very traumatic, long, nearly ending in C-Section, birth.

Eli hit all his developmental milestones just fine, give or take a few weeks, until around 14 mos. He had a few words at 12 months including mama, daddy, kit-kat (cat), milk, more and he also signed more and all done. He was breastfeed until 11 mos, so he never even got a bottle really until 12 mos, so he was late getting off the bottle. He started milk and gluten at 12 mos (we have Celiac Disease in our family so I was hesitant when to start wheat.) and seemed to be fine. Meanwhile his brother was complaining of tummy aches and his own (undiagnosed) sensory issues were still being dealt with.

We noticed around 14-16 mos that Eli had stopped saying the words he WAS saying, stopped signing and wasn't picking up NEW words. He also was suddenly not eating ANYTHING. I mean virtually nothing. I found this very odd because up until 14-16 mos, he ate EVERYTHING I put in front of him and I loved it because Harrison was SUCH a picky eater.

So at his 18 mo visit I addressed my concerns with his pediatrician and for once she didn't blow me off. Having taught Head Start and worked in Early Intervention, I knew what I had to do. I called Early Steps, Louisiana's early intervention service for children under age 3 and scheduled a screening/eval. As I suspected he tested about 6-8 mos behind on his language, slightly behind on social/emotional and slightly behind on fine motor. He also failed the autism screening.

Now, granted the 'cut off' score for the autism screening was 20 and he got 23, but still. It was enough to warrant an evaluation. Of course, Early Steps does not actually COVER the cost of diagnosis and I was advised by a few people to just let it be and let him get the speech and OT Early Steps was suggesting.

But do I normally just do what people say? Not so much.

I knew from my years of teaching that if there was even the slightest chance he DID have autism, we needed to know now and get therapy started immediately. So I did some digging and found a developmental pediatrician, the fantastic Dr. Susan Fielkow at Ochsner and scheduled an eval.

Dr. Fielkow is great and doesn't really do 'scores' on young children, which I appreciate, because someone needs to really look at the whole child to see what's going on. Eli did receive a diagnosis of autism, albeit mild.  Now this is where most people think I'm crazy or a hypochondriac looking for sympathy! They say, "but he looks you in the eye!" "He hugs you!"

Yes he does. He looks ME in the eye and he will look some strangers in the eye. And he hugs ME on HIS terms. Can I pick him up on my own and get snuggles? No, not usually. That usually sets him off. He will play games like Peek a Boo and other baby games, but that's the point, he's behind. If he's hungry, I wouldn't know other than knowing his cries because I am his mother. He does not take my hand and lead me to the fridge, or say hungry, or eat. (Although he IS making strides and does now stand in the kitchen and fuss.)

So yes, at first glance, he looks totally 'normal'...whatever that means anymore. His stims are fewer and farer between since starting therapy and they are not very noticeable--mostly visual stimming with a toy or an inanimate object. Lots of vocal stimming also, whining, crying, strange noises but little real language. He can usually be easily diverted from his repetitions and stimming with some major gross motor pressure, flips and games. He is currently obsessed with circles and loves everything circle! He is a sensory seeker so he loves the wild tossing, flipping and other fun things an OT would do :)

My son has autism. Many children do and there are tons of myths surrounding it. I encourage you to never judge that someone is making something up, or that their child does or doesn't have a certain special need. The faces of autism are drastically different but still adorable and deserving of a chance.

What are we doing for Eli?

At the moment, once a week speech therapy, occupational therapy and special instruction. We're looking into applying for a pilot program for autism therapy through Early Steps because we cannot at this point afford the ABA therapy that would benefit him.

He has also begun the gluten free diet. This is a no brainer due to me having Celiac Disease and Harrison being gluten sensitive. It remains to be seen does Eli REALLY have autism or does he have severe Celiac Disease showing as symptoms of Autism? It doesn't really matter because the treatment is the same for him, Gluten Free diet and therapies.

A recent study in Pediatrics showed that children of mothers with Celiac may be 3 times more likely to have Autism. This does not surprise me at all. The statistics speak for themselves...1 in 150 have Autism, 1 in 133 have Celiac. Do the math.

Many children are helped by the GFCF diet. Some are not. But I feel it is an easy, (mostly) harmless way to help your child. Never start the GFCF diet without professional guidance. Some autistic children are SO picky about food that if you went cold turkey they literally would dehydrate and starve themselves. Go slowly and seek help through professional organizations and your doctor/nutritionist.

My advice for parents who suspect a problem? Don't take no for an answer. Trust your gut. Maybe you're wrong and your kid is just fine. Wouldn't you rather look stupid then wait and find out later there WAS something wrong and you could have helped? You always have the final say in your child's health. Do you want to delay or not do vaccinations? Then do your research and speak your mind. (For the record we do not do shots for personal religious reasons, and Eli still has autism.)

Do you want to try the GFCF diet? Do your research and try it! Do you want to try other biomedical techniques? Again, great, do your OWN research and see what you can do. You are the authority on your child and you know what's normal and not normal for them! I personally vote for trying just about anything once to see if it will help!

I can tell you by now I know what sets Eli off and what makes his symptoms worse. Don't be afraid to be an advocate for your child. No one else will be.

We paid (or will pay) about 1000 dollars for Eli's diagnosis. It was worth every penny. It set my mind at ease, let me know what we were up against and gave me a professional to help give me guidance. So, no Eli is not your 'typical autistic child' (again, whatever THAT is supposed to mean.) but he is who he is and we'll help him learn to be the best he can be.

My child may have autism but autism does not have my child.

Please feel free to share your stories of autism and how you are coping!!

~~Amy