• 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.

I Know I'm Doing The Right Thing...but So Frustrated.
0

13 posts in this topic

I think this is more a newbie vent than anything...but reading here today has been so validating for me.

My son is 7 years old. Starting at age 3 we have battled a whole slew of things with no difinitive answers. He has long had horrible mood swings coupled with tantrums, kicking, yelling, etc. Even that description does not give the severeness of it justice. When not in the middle of one, he is one of the sweetest and loveable kids. Dr. Jekyl and Mr. Hyde. He

0

Share this post


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


Hi and welcome. It sounds like you've made great progress so far. Keep right on trusting your mom instincts. It sounds like you have good ones!

A lot of Dr. Jekyl and Mr. Hyde kids have food chemical intolerances as well as reacting to gluten and casein. Preservatives, food colors, salicylates, or natural amines that mimic neurotransmitters can all be issues for different people. Mom and I could always tell when my brother got into a bunch of food colors or artificial flavors because he'd go Mr. Hyde! Allergic reactions can be within a couple hours, but salicylate reactions tend to build up over days or weeks of exposure and amine reactions can be delayed as far as two days.

You might find these websites helpful. They have information on food intolerances and describe an elimination diet that is low in additives, amines, and salicylates called Failsafe. You can use to see if food chemicals are an issue. The work is out of the Royal Prince Alfred Hospital Allergy Unit in Australia, where they are much more aware of food chemical intolerance and allergies than in the US.

http://fedup.com.au/

http://failsafediet.wordpress.com/

0

Share this post


Link to post
Share on other sites

Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

0

Share this post


Link to post
Share on other sites

Yes, it could be a smore! And, yes, I have a crazy mood-swing celiac kiddo. She too is the most loving little girl...until...gluten. She gets super physical and has very little impulse control when she has gluten.

Hang in there. Glutenologist and others are more experienced than I, so definitely follow their leads!

And, there are good graham crackers at whole foods! We camp a lot, so gluten-free smores are part of our lives!

Thinking of you!

0

Share this post


Link to post
Share on other sites

Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

0

Share this post


Link to post
Share on other sites
Ads by Google:


That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

Thank you all so much for taking the time to respond. It means so much to me. Sometimes I feel so lost. His attitidue is a little better today...still stuffed up. He doesn't react very well to typical cold/allergy meds so bought some all-nutaral stuff (Sinupret) yesterday in hopes it will help him.

Thank you for suggesting the journal. This is something I've been doing. I have to remind myself to be as detailed as possible, though.

I was so excited last night to tell my husband about reading the posts from others on here that have a child that show reactions through behavior. It was such a 'weight lifted off of our shoulders' to know we aren't alone and that we aren't insane!!! :)

I do have a question - what does "cc" mean? Sorry if it's obvious...

0

Share this post


Link to post
Share on other sites

Cc means "cross contamination". Oats are a good example. Regular oats, due to standard harvesting practices, have wheat in them. This is cc. Sharing a pb jar with a wheat eater will cc the pb from the bread crumbs on the double dipped knife.

0

Share this post


Link to post
Share on other sites




cross-contamination :)

0

Share this post


Link to post
Share on other sites

Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

0

Share this post


Link to post
Share on other sites

Hi Lindsay,

If you do a search on gluten and ataxia or gluten and opiates you will find there is a definite connection to affects on the brain. There is no doubt that gluten can negatively affect the brain. Some people think casein can have bad affects on the brain also. Casein is the protein in cow milk. I know I once ate some cheese and couldn't sleep for 3 days straight. It doesn't affect me like that anymore but I have healed a lot since then. So, IMHO a mood change is not a surprising thing from gluten.

There is some possibility gluten and casein can negatively affect children with Asperger's syndrome, but that is controversial at the moment.

0

Share this post


Link to post
Share on other sites




Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

A person who is gluten-free needs separate condiments, a separate cutting board (gluten gets in the scratches and is hard to clean out), and a separate toaster or toaster bags at a bare minimum. You also can't stir a normal pot of spaghetti and then forgetfully stir the gluten-free pot with the same spoon, or cut regular bread with a knife and then use on the gluten-free loaf without washing it.

Baking with wheat flour is something else to consider because gets in the air so easily. Play-doh is another gotcha as it contains gluten. We've even had some highly-sensitive members that tracked problems to gluten-containing pet food.

0

Share this post


Link to post
Share on other sites

I just want to say you are not alone.

The behavior you describe is my son (also 7) EXACTLY! He is the best kid in the world on good days, but those are overshadowed by the bad. Tantrums over the smallest things, he hates us, wishes he was never born, everybody is mean to him, etc. He has also started throwing things and knocking over things. Consequences do not matter. Rational thinking is gone.

We think we do a pretty good job with the gluten-free diet (I have celiac too) so we just don't know what else to do. It is exhausting.

We were just at the Celiac clinic today (1 year blood tests) to see if his numbers have gone down. They had not gone down much at his 6 month check-up. I talked with his doctor about other sensitivities (artificial color, preservatives, etc.) she didn't know much, but said it was certainly a possibility. But really, since we have been gluten free, he doesn't eat much processed foods at all - rarely anything with food color. She suggested a more detailed food journal/behavior journal.

She is also going to refer us to the clinic's social worker to help us find a behaviorist who might be able to give us some coping techniques. If we don't get this figured out, we are in trouble. I can't imagine him as a irrational teen-ager rampaging through the house. If I learn anything, I'll share it here.

We are also trying to make sure we can tell when he is just being bad and when he is being "gluten bad" . . . do we punish him for behavior that he simply can't control? My husband's fear is that it is not the gluten at all and that our son is psychopathic - then what do we do?

The weird thing is that he is an ANGEL in school. When I describe his behavior at home, they are shocked and in disbelief. If it is truly out of his control, how is he keeping it together at school?

Hang in there . . .

Cara

0

Share this post


Link to post
Share on other sites

Cara - this sounds very similar to my son! He improved after removing gluten but then he kept having episodes. We removed milk an he got even better. The extreme episodes are farther apart and good dys growing in number. But he stills has those bad says and days of just constant irritability. It could be a cc of gluten or milk,...or something else we haven't identified. I have a lot of the same questions and concerns as you.

Our son did see a behavior therapist when he was 4 or 5 and she didn't see any concerns like ADD, etc. she noted he seemed to have some heightened sensory issues but not horribly so.

I am Watching his sugar pretty closely. We see an alternative med biofeedback specialist for his allergies (it helps...whacky but it does) and she noted his sugar reaction (along with milk and gluten) was really high.

Keep in touch. I will be interested to hear what you are able to uncover.

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
      107,375
    • Total Posts
      935,756
  • Member Statistics

    • Total Members
      65,059
    • Most Online
      3,093

    Newest Member
    ShaneGrimes
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
    • Are you substituting something for the PPI?    I'm not sure what meds will mix well with it, but you could ask the pharmacy or Dr. for advice on what might work.   I'm thinking you stopped something that may be helping in some ways, and are now allowing your symptoms to return.   If so, it makes sense to find something else to help with symptom control.   I don't know what products you have there.   We have Tums (calcium carbonate), Gaviscon (aluminum hydroxide with magnesium carbonate), Pepto and Kaopectate (same product), and Gas-X (simethicone).    I believe all of these can be taken with PPIs, but do check.    I don't know that Pepcid (Famotidine) can be mixed, but you could check that, too.   The Gas X really helps with the bloating and odd pains, as it breaks up the gas.  The Tums seems to help neutralize the acid and upset stomach / stomach pain.  These two are my mainstays.  You may have other products that could be as effective. Have you tried mixing bone broth with cornstarch or gluten-free flour to make a gravy?  Mix in some ground beef, chicken, or turkey, add some gentle veggies (carrots, or maybe a can of Chinese veggies?), a little bit of gentle spices for taste, and then put over gluten-free pasta or white rice.  Make a chicken sandwich with gluten-free bread.   Can you tolerate mayo?   Put a sprinkle of salt, pepper, and lemon juice on salmon, then coat with mayo and microwave.   Or mix some mayo with chicken or tuna for a chicken salad / tuna salad sandwich;  or eat just a scoop of it.   If you can tolerate dairy, Schar's newest version of table crackers are like saltines and are tasty.   If no dairy, try their breadsticks.  You could have either with soup or bone broth.   Schar's has enough fat to give you calories to help stave off weight loss, and you can add more by brushing a little butter on the crackers. You could try other casseroles with tuna or some lean ground hamburger.  Have you also looked at a possible new food intolerance?   I suffered for a few weeks before I figured out it was dairy for me.   Eliminating dairy wasn't enough.   I had to get rid of anything that might upset my stomach in order to start getting better.  I printed lists of low FODMAP, low acid foods, and low lectin foods, then selected only those foods that were on all 3 lists.   You might consider doing this with food lists that are right for you.  Hope this might spark some ideas!    
    •  I have a friend with MS, another with breast cancer and a third with RA.  At the same age my only problem is I cannot eat gluten!  So when I start getting frustrated about food I think about that and how lucky I truly am.  Once you get in the swing of it it gets easier and then you start to feel better which makes it all worth it.    Also when I first went gluten-free I read on this group about Mark's daily Apple and the Paleo community. I turned to that which was extremely motivating.  I've never seen so many people so excited about not eating gluten. It was a very positive energy and motivated me to find other foods to eat. Also, they love bacon! 
    • I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.   So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.   I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  
  • Upcoming Events