• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

3 Year Old Son Being Tested
0

8 posts in this topic

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!

0

Share this post


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


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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites
Ads by Google:


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?)

0

Share this post


Link to post
Share on other sites

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!!!!!

0

Share this post


Link to post
Share on other sites




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!

0

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

  • Forum Statistics

    • Total Topics
      107,332
    • Total Posts
      935,528
  • Member Statistics

    • Total Members
      64,993
    • Most Online
      3,093

    Newest Member
    EmmaLauren
    Joined
  • Popular Now

  • Topics

  • Posts

    • Former lifeguard and competitive swimmer here. There could be some potential issues, but I think it's pretty unlikely. Here's why I think that: 1. The water volume in a standard 25m pool is enormous (hundreds of thousands of liters). Assuming there are people swimming in the pool, any hot spots are likely to get dissipated pretty fast, so you'd have to swallow a lot of water to get a serious gluten hit. 2. By law (at least in Canada), the water inflow and outflow rates must be such that the volume of water that makes up the pool must be replaced every 24 hours in public pools. There are always some dust bunnies, bandaids and whatnot trapped in the corners at the bottom of the pool, but the main volume you're interacting with gets replaced regularly, so no build-up. Public pools are also vacuumed on a regular basis. For cleaning agents, typically on bleach and baking soda are used in my experience. Private pools are another story and there no guarantees. 3. Most public pools prohibit food on deck due to public health regulations and/or wanting to avoid cleaning up messes. This limits potential sources of gluten to personal care products on other people's skin. Considering the volume of a pool, I'm having trouble imagining this resulting in a significant exposure, but I have also swam in packed outdoor pools that taste like sunblock, so who knows. I would definitely worry if people were eating hot dogs or shotgunning beers in the pool though (definitely a thing at backyard pool parties). 4. Pool chlorine can be either tablet based, liquid based or gas based depending on the pool. Either way, it is bleach-based (sometimes literal bleach gets dumped in smaller volume bodies like hot tubs when the chlorine is off). The pool I worked at, which was newer used liquid injection, and I would imagine this is true of most newer facilities (gas is undesirable as it can leak and kill people because it is odourless - some older pools still have this set-up though). Tablets are more common in backyard pools, and it's possible that these might contain gluten in some form (I have no idea and have never checked).  For reference, the concentration of chlorine in a swimming pool should be between 0.5-5 ppm, depending on the pool temperature and your region (lower for colder pools, higher for hot tubs).  So, I guess my opinion would be that a public pool is most likely pretty safe from a gluten perspective. Chlorine (or rather, the volatile gases resulting from the reaction of chlorine with biological waste in the pool) is an irritant though - occupational asthma rates in lifeguards and swimmers is quite high. Some people are more sensitive to this than others. My dad cannot swim anymore because he becomes ill for a week with severe upper respiratory symptoms (open water swimming is ok). I get similar, but less severe symptoms (part of the reason I don't swim anymore, sadly). Not sure what symptoms you experienced, but something to consider. http://www.ncceh.ca/documents/practice-scenario/pool-chlorination-and-closure-guidelines
    • I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised! Few things to think about: If up to 1% of pop are celiac, at much as 6% could be NCGS - further reading here: https://www.celiac.com/gluten-free/topic/117969-non-celiac-gluten-sensitivity-a-resource/ NCGS can present in the same varied ways as celiac - Not just or even primarily gastro related. I get back pain, chest pain, skin problems, eyesight problems, anxiety, depression, balance issues, nerve tremors and twitches etc. etc Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really.  Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:  https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/   Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision. Best of luck Matt  
    • Newly diagnosed, who do I tell? I'm not talking friends & family. I am normally private about health matters but I feel it seems I need to tell so many people. Does anyone have a list? Some are obvious like doctor and dentist but one came up for me the other day when my massage therapist asked if I'd had any changes in my health and I said no but halfway through the session realized that, "Duh I should have mentioned Celiac! Clearly the lotion used could be an issue." So who is on your list to tell? Here's who I have so far: Doctor(s) Dentist Restaurant Servers Massage Therapists Hair Stylist Babysitters, Petsitters or Housesitters (anyone who might bring or prepare food in my home)      
    • Hey, I am learning also...make sure you are taking a good multi-vitamin...gluten-free of course.  I have had a few "charlie horse" pains in my thighs and am taking an extra B12 tablet...If you have an ALDI grocery store nearby they have lots of gluten-free items snacks and frozen.  Vitamins will help...you are not getting enough nutrients with what you are eating.
    • I feel the same way! Newly diagnosed (gluten-free since July 1) and never had major GI symptoms mostly neurological issues and other very random stuff. So no red flags to tell me, "You just glutened yourself!" Or at least I haven't identified them yet. I'm not sure if I'm feeling better or not yet. I do have more energy but lots of anxiety and random symptoms that might be celiac related... but who knows. I'm just not sure if this is what "feeling better" is yet. I can't imagine what that is like... or will be like. And I keep reading about people "getting sick" when they are glutened but that is so vague. For me, I'm not sure I'll know if I've actually been glutened or not. I feel like I'm extremely careful but I'm not sure if I'm being over the top, or if I'm doing it right, or not enough and need to do more. I'd just like to get to a nice gluten-free baseline and note what that is like so that I can compare how I used to feel and how I might feel if glutened so that I'll know! Sorry, didn't mean to hijack your thread and provide no answers. I can just relate, that's all.
  • Upcoming Events