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3 Year Old Son Being Tested
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We are waiting for results for a "celiac workup" blood test for my 3 year old son. In the mean time his neurologist NP wanted us to do a trial being gluten-free. Its been about 2 weeks since we started the diet and already there is a huge difference in him! Background: he has ADHD, being evaluated for autism (if he IS it would be high functioning) he is speech delayed and developmentally is equivalent to a 20-24 month old. I was speaking with his NP today (she called to see how he is which is pretty awesome) and when I told her about how well he is doing she was really excited. She told me basically "even if this blood work comes back negative please, please consider keeping him gluten-free" so far the only labs we have are his CBC and other basic panels. She did an in depth iron screen and he s really deficient so we have started a multivitamin with added iron.

His symptoms include: hyperactivity, horrible sleep at night, I dont think he's ever had a "normal" diaper (very looose stool) super colic/high needs as an infant, massive MASSIVE meltdowns for no apparent reason, speech delay, sensory processing issues, fleeting eye contact. And he usually has aa really bad week with a horribe cough and needing albuterol breathing treatments every couple of weeks. That's all I can think f right now....

I see an obvious difference in his behavior now that he s gluten-free. Even a friend mentioned that he was so much more calm then usual (she had no idea we were trying gluten-free so I like to think that's a good sign and not me just having wishful thinking). His stool is much closer to normal then I've ever seen from him. He also hasn't needed a breathing treatment (but that wasn't something we did every day so that could be a fluke).

Do you think he could have a gluten intolerance issue? (Its the only thing that is different)

Any suggestions on how to keep him from getting gluten from school? He is in developmental preschool and I send his snacks but I am pretty sure they are "accidentally" letting him have stuff he shouldn't.

Also, does it matter? I know its extremely important if he get an official DX, but what about for now?

He has been 30-32 pounds for about a year and a half now and is horribly picky eater. Any suggestions to fatten him up? (Can't have obvious dairy like milk, yogurt, cheese, etc)

Thanks for any input. I'm really glad I found this site! I've been researching non stop and this has become my favorite place to find real life stories. Thank you all!

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My son is autistic.  When he was two, we went off gluten for eight months, with clear behavior improvements.  Then we slowly went back on (he was reacting to tons of foods initially, and gluten was the last one we finally added back).  No noticeable reaction when we added it back.

 

Now we're finding the celiac runs rampant in my family, and I'm wondering if I did my child a horrible disservice going back on gluten (he's six and still non-verbal).  We're staying on gluten long enough to get testing done, and then the entire family will be going gluten-free, diagnosed or not.  

 

I say all this as context for my next thought.  When you have a child who is challenged, and you see a noticeable impact from going off gluten, I'd take that very seriously.  At this point you don't know if it's gluten sensitivity in your son or celiac, but you know it's real.  Remember that.  Get the preschool on board.

 

There are some researchers suggesting now that asthma is an autoimmune disease just like celiac, so it would be really cool if going off gluten helped your son not to need breathing treatments, too!

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We are waiting for results for a "celiac workup" blood test for my 3 year old son. In the mean time his neurologist NP wanted us to do a trial being gluten-free. Its been about 2 weeks since we started the diet and already there is a huge difference in him! Background: he has ADHD, being evaluated for autism (if he IS it would be high functioning) he is speech delayed and developmentally is equivalent to a 20-24 month old. I was speaking with his NP today (she called to see how he is which is pretty awesome) and when I told her about how well he is doing she was really excited. She told me basically "even if this blood work comes back negative please, please consider keeping him gluten-free" so far the only labs we have are his CBC and other basic panels. She did an in depth iron screen and he s really deficient so we have started a multivitamin with added iron.

His symptoms include: hyperactivity, horrible sleep at night, I dont think he's ever had a "normal" diaper (very looose stool) super colic/high needs as an infant, massive MASSIVE meltdowns for no apparent reason, speech delay, sensory processing issues, fleeting eye contact. And he usually has aa really bad week with a horribe cough and needing albuterol breathing treatments every couple of weeks. That's all I can think f right now....

I see an obvious difference in his behavior now that he s gluten-free. Even a friend mentioned that he was so much more calm then usual (she had no idea we were trying gluten-free so I like to think that's a good sign and not me just having wishful thinking). His stool is much closer to normal then I've ever seen from him. He also hasn't needed a breathing treatment (but that wasn't something we did every day so that could be a fluke).

Do you think he could have a gluten intolerance issue? (Its the only thing that is different)

Any suggestions on how to keep him from getting gluten from school? He is in developmental preschool and I send his snacks but I am pretty sure they are "accidentally" letting him have stuff he shouldn't.

Also, does it matter? I know its extremely important if he get an official DX, but what about for now?

He has been 30-32 pounds for about a year and a half now and is horribly picky eater. Any suggestions to fatten him up? (Can't have obvious dairy like milk, yogurt, cheese, etc)

Thanks for any input. I'm really glad I found this site! I've been researching non stop and this has become my favorite place to find real life stories. Thank you all!

My only credential would be being a mom to 5 children w/various dietary needs, but I would say for sure, remain gluten-free. 

 

As far as helping him only have HIS snacks at school, you might want to express to the teacher(s) how much better he will behave (they'll probably care about this) if he only eats his own gluten-free snacks. It really does matter. My 1 son is maybe 85% gluten-free and he still has lots of digestive problems that aren't resolving. Getting to 100% gluten-free will be important.

 

Does he like coconut milk? Several of my children like it and benefit from its high-calorie, good fats and creamy texture. Mild coconut curry over brown rice, smoothies, even coconut milk tapioca pudding--these might be popular with your child.

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As I am new... I could be wrong. But any celiac work up would require him to be on gluten for quite a few weeks for accurate testing

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The best "kid fatten-upper" is coconut oil.  When it's in the liquid form you can put it on a spoon and drink it - my two youngest will do that.  You can also keep it in the fridge and eat it in a solid state.  It really doesn't taste like anything.  Toss it in a smoothie.  Spread it on toast.  Put it on cooked veggies like you would use butter.  Seriously, it's liquid gold.

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I will definitely go look for some of that coconut oil when I go shopping again!

About the testing, he was eating gluten when they did the blood test ant then after the blood draw I took it out of his diet (the whole house actually!) I didnt realize that he would need it for more testing possibly:( now I'm really reluctant to let him have it because there is clearly a difference in is behavior and his diapers. He is getting genetic tests as well as a bunch of other testing done too. (Not just for celiac but also other possible chromosomal abnormalities) Could this be enough or will he definitely need the endoscopy too (that the other test right?)

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As far as I understand, he cannot be diagnosed with Celiac without the biopsy. (at least my doc told me that)

But I wanted to add...my son is HF autism and had horrible stomach problems as a baby and young boy.  We were gluten-free and casein free for 3 years and it was a remarkable improvemnt.  Around kindy, we challenged him and did not see any more bad reactions and he has been on a "normal" diet ever since.  Some kids are able to come off of it.

Many of our friends in the autism community are also fans of the specific carbohydrate diet (SCD).  I don't know if you have reached out to the autism community, but the moms there have remarkable knowledge of gut/behavior relationships.

Finally - I don't know if you have ever heard of The Thoughtful House (it is renamed The Johnson Center) - but I know many families who swear by their services - they specialize in developmental issues but with a full child approach -(ie. tummy issues is a big common thread in kids on the spectrum)

In the meantime - I wish you good luck and hope that your son feels better soon!!!!!

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Our GI DX two of my kids with blood alone. We only did the biopsy to get a starting point visual.

Yes, he should have one serving of gluten a day leading up to the biopsy. It sucks when you already know and have to feed them poison!

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      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
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    • I'm actually scared to go to the doctor and could use some advice
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