Personality Changes In Child On Gluten Challenge?

[doulagrl]

Our 4 yr old son has been gluten free since October of last year but we've seen little improvement so we've been referred to Great Ormond Street Children's Hospital in London and the Gastro doctor expressed concern that since there has been no marked improvement in growth and blood tests were done after his ped said to go gluten free (I'm Celiac so it was a natural conclusion) that he may have been misdiagnosed and that there may be another more serious problem that is being ignored because they assume its Celiacs. He has asked us to do a 6wk gluten challenge and then an intestinal bioposy and complete blood work up for both gluten and other food allergies and intolerances. We were told there may be bahavioural changes while he did the gluten challenge if he is actually intolerant. I just assumed he was referring to fatigue related changes but we're seeing other things as well. Has anyone else experienced marked personality changes in a child on a gluten challenge, or perhaps when they accidentally get exposed? Our son is usually a very happy, easy going little boy but since a few days into the gluten challenge its like I have a different child. He suddenly "hates' everything, if we go out he hates being out and wants to be home, if we're at home he hates being at home and wants to go out. He doesn't want to play with his toys and is having fits of temper that leave him so mad he is punching the mattress on his bed. He's never been one to have temper tantrums and is usually very even tempered and plays well on his own. Now he's bored all the time, just wants to lay on the couch and watch TV. I feel like we suddenly went from age 4 to 14 and I'm not ready for a teenager yet Has anyone else had something like this happen? It sounds horrible but I'm hoping he's Celiac and this is just a reaction to the gluten because its almost to much to think that my sweet little boy is changing into this as just part of his natural development.

Melody

[Ursa Major]

Your son's personality changes are a very common symptom of celiac disease, not just in children. Those temper tantrums are typical, and so are the other problems.

I've heard (and seen) that a lot of kids will turn into absolute little monsters on gluten, while thy are sweet little angels (most of the time) on a gluten-free diet.

Six weeks back on gluten will absolutely NOT get you positive tests for celiac disease! When a child's gluten damage has healed, it could take up to a few years before the villi are destroyed and the tests are positive.

Even with adults it would take at least three to six months, and often longer. When then you look at the fact that tests in children under six are notoriously unreliable to begin with, you will realize that your gluten challenge is useless in getting true test results for your son.

I can see that you may want to test for other problems. But you don't need to make your son sick again for those.

There is one easy test to see if the gluten is changing your son's personality: Put him back on the gluten-free diet to see what happens.

Also, why don't you have your son tested by Open Original Shared Link? Their tests are still accurate up to a year after starting the gluten-free diet.

[home-based-mom]

Read through this Parents section and you will find lots of posts about kids who have Dr. Jekyll and Mr. Hyde personalities, depending on whether they have been exposed to gluten or not.

I think you have your answer about you son's gluten intolerance, but agree that as not every issue has been resolved, more testing should be done.

[gfpaperdoll]

Once you have your child gluten-free again, please check what he is eating. I see that you are in London, I think that the gluten-free items there use wheat starch. We are starting to get it in the U.S. Some of us cannot tolerate it. & some of us, like me, are not going to be eating anything with wheat starch.

You might want to do some research & consider taking your son grain free. Maybe allow a little cooked white rice & some corn meal for cornbread - you can also make cornbread waffles, & a few corn tortillas.

Also, a lot of us have a problem with dairy & soy. I think if you will read some posts by Ursa, you will see that she agrees that diary & soy are not healthy for you. There is a lot of informatin concerning this on the internet.

If you will read some of the threads on here about cross contamination etc, you might see something that you have missed.

Maybe after a year or more your son might be able to tolerate a few of the gluten-free grains, but my guess is that at this point he cannot. You should be seeing a healthy growing child...

[doulagrl]

Unfortunately we are on a National Health Service here which will not pursue further testing until they have a more definitive answer regarding whether or not this is Celiac's. Also our main problem has been that our son has not gained any weight since he was 2.5yrs old and he is now 4+yrs old. We've been told that in some cases the villi simply don't heal even after months on a gluten free diet so the biopsy will show damage not just from this gluten challenge but potentially unhealed damage from before he was gluten free. If that is the case they want to put him on a round of anti-inflamatories and steroids to help his body heal the damage. It was a very difficult decision for us to do this gluten challenge and one we didn't take lightly. We have decided that after the testing is done we will return him to a gluten-free diet and see if the behavioural issues resolve themselves. My doctor has been very supportive in diagnosing me as gluten intolerant without a bioposy and even in the light of negative blood tests which were done too long after I went gluten free. Hopefully my son's doctor will do the same if the test results come back negative but we still feel there are significant improvements after returning him to a gluten-free diet. Its possible that one or both of us are simply gluten intolerant and not actually Celiac. At least now we should be able to see if the growth issues are linked to poor nutrient absorbtion due to intestinal damago or if there is another underlying problem.

Melody

[mcs1984]

Melody-

Our son is 4 and up until about 24 weeks ago we did not push a lot of breads and other items that now i know have gluten in it. We did it because we felt that he didnt need all the carbs. Then because of other problems he was going though we went to high fiber foods and some of those were gluten free and we saw a different behavior. Then he went through the blood work and all came back neg they told us to push the foods and that same weekend my little boy went from being our sweet boy to being our little monster (i am saying he has never hit us, pushed, bit he was just a sweet little boy) and we have had it all. Then he got sick and it pushed his scope back well now we finely got it done and it all came back neg. our GI doctor said oh dont worry about it he is just going though hard time. Then his doc said lets try the gluten-free again and we dont have him back 100% but i can already see a small change in him. Though this website i have found so much help and understanding and that made up our minds to stop with the test and just take him off. I hope you find out whats going on but i will tell you what everyone else has told me, if you know he does better then thats all the matters.

[Pattymom]

My dd turns 4 in a week and has also gained and grown very little she was 2. She was gluten free until she turned 2, then the Md said to give her gluten and get her a blood test, after a few months we had her tested, it was negative and we noticed no ohter real effects. she was always tiny, but by 3 it was clear her growth had really levelled off. her blood work is still negative, and we are now also seeing an edocrinologist. She has been glutne free again since Feb. and after initial gain, she stopped again. We are going to the GI on July 11 to look for other malabsorption problems as well. While it is enough for me to know she can't have gluten even without the positive tests, like you, it still wasn't enough to solve the issues that concern us, so we are looking for more answers. It challenging when I'm not sure any tests will help, but I feel we need to rule out other causes in case something else serious is going on. (She is also dairy free for last month or so, before that gets suggested, she does eat soy. She is not vacinated, she was so reactive to anything I ate when she was a baby it seemed crazy to let someone shoot anything directly into her body)

It's a hard place to need to trust doctors when inherently we know that many of their diagnostic tools are flawed. Yet, it still seems to me that going gluten free was not enough and maybe there is another growth issue. I'm sure I will be facing the scope decision in another few weeks, and whiel I hat the idea of unneeded traumatic tests, what if it is something more than just the gluten.

good luck

Patty

[B'sgirl]

My son's blood test came up negative as well but it is obvious to me that he has problems with gluten. As others have said, the biopsy isn't really reliable. I am actually going to take my son to an allergist to test for other allergies to help rule out other problem foods. One thing I have suspected is a banana allergy or intolerance. It can also be caused by an autoimmune response to a protein so I suspect it may be related. You may want to consider that as well. Here's a link with a little info: Open Original Shared Link

[jesslynn555]

Hi Melody,

We went through something similar. Our son is 4 years old and 25 lbs (11.36 kg). He was diagnosed with Celiac in October of 2007 (possitive blood test) and after 6 months on a gluten-free diet he still wasn't growing. We did however, see some improvement in his mood and energy level.

We took him to a pediatric gastroenterologist who said that she wanted to do a biopsy to see if he had possibly been misdiagnosed or if there were any additional problems. He had to go back on gluten for 4 weeks. It was a tough time. He whined and cried all day long. He couldn't even walk out to the car. He has horrible nightmares.

In the end, I'm still glad we did it. Not everyone shares my opinion but in our case it proved necessary. During the biopsy they comfirmed the diagnosis of Celiac. They also found that he had bacterial overgrowth and needed an antibiotic. They ALSO found that he had extremely low pancreatic enzymes and needed a prescription to supplement them. After addressing these additional problems he has shown major improvements in his mood, behavior, energy level, and finally, his growth! We are so excited. Without the biopsy we would not have known what we needed to help him.

Please don't let anyone's advice, including my own, take priority over your parental instincts. This website is a great resource and I have received great advice here, but you are the one who knows your child best.

Good luck.

[doulagrl]

Thank you everyone for your responses so far. Just hearing your stories and knowing we aren't the only ones experiencing this has helped. The additional information we have received has also been very helpful. I had often wondered if there was an additional food sensitivity that was contributing to the problem. I also knew that enzymes played a key role in nutrient digestion and had already purchased a supplement with natural plant enzymes and amino acids to help digestion and maintain a healthy intestinal lining for my son to use after his 6wk challenge was done. So maybe my mommy instincts were on to something there and I will ask the GI doctor about it. Either way I figured if he was showing damage his body could use all the help it could get. I'll let you all know what the test results are and how he reacts when we return him to a gluten free diet.

Melody

[CeliacMom2008]

My son is the only Celiac in our family (or so the tests say). We see such a dramatic change in his mood when he is glutened and compared to pre-diagnosis that we have a running joke around here. If my husband or I is in a bad mood the other is usually quick to say, "Perhaps you should try a gluten free diet!" The mood changes are one of the best things we've experienced with a gluten-free lifestyle. Our son is soooo much happier, energetic, out going, polite, laid back, etc.

Good luck through all this! I hope you get the answers you need!