Really Suspicious!

[jodster]

Hello. I have posted on the pre-dx sight about myself but now I feel completely overwhelmd as I am thinking there may be a possible relationship between my children and some of their problems and celiac as well. My GP is a totall a#$, completely old school and thinks that celiac is in my imagination(he doesnt see anything besides a viable broken arm lol))) Anyhow, myself...I have been having MS symptoms for about a year now complete with flare ups and all. Mostly sensory with some weakness here and there, but 3 brain MRI's have all come back negative, AS well, I had 2 vicious sets of bleeding from mouth and nose during both pregnancies, both lasting a week, both life threatening, and noth requiring transfusions galore. I was DX'd via clinical at a year old by my pediatrician who was celiac himself but it was recinded at 7, and then at 21 I was hospitalized and on IV for 2 weeksm major stomach problems so the gastro thought I should try the diet again, and I did for 5 months and then had a negative biopsy(obviously because I had maybe healed by then). Anyhow, I brought up celiac again to my GP a few months ago because all of teh other tests have come back negative and I am tired of feeling like I am going crazy. He said that if I had celiac I would be 90 pounds and have lots of GI problems, not neuro ones, but he allowed me to have the tTg test which came back negative. So thats my end of it.

My daughter(20 months) is a healthy weight(25 pounds), no known allergies. She started having some choking episodes a month ago requiring me to call 911, and perform life saving each time(there were 7 episodes in all). She had a barium swallow which shows that her flap at bottom of esophogus is not closing properly therefore causing stenosis reflux. In addition at the same time she developed an umbilical hernia and is developing a hiatal hernia. She is neing treated with prevasaid and sees a surgeon in a couple days for the hernia .

My son(3) eats from morning to night, he should weight 50 pounds (lol) but he is 31 and has been forever. He gets very impatient and is about 6 months behind in his expressive language. He is very bright but just cant get some of teh pronunciation although he is constantly exposed to proper language activities. His outbursts at times are for very silly reasons(usually because he wants what he wants yesterday, although they are short lives. His listening skills also leave a lot to be desired at times. I had him assessed at a speech clinic and they said at this time he is within normal limits and I believe ruled out autism or any of those spectrum diseases based on his interactions and affection, eye contact, reality. etcetc.

In saying all this, I myself was very naive about celiac myself up until a year ago. I didnt realize all the damage it could do to all parts of your body. I also thought it was a mainly upset stomach thing until it was mentioned to me that it could mimic MS, and then I stae=rted looking in to it more. So at this point I am wondering if it could be responsible for a lot of whats going on with my health and that of my children. I know that a lot of my sons problems are that I used to give in to him, although that has stopped to a certain extent, I am just wondering if any of your toddlers have exhibited any of these behaviours and symptoms.

If you got this far, I thank you for your time and replies.

[Ursa Major]

Hi and welcome to this board. If you were diagnosed with celiac disease at the age of one, you have it still. Because you either have it, or you don't, you don't outgrow it. And all the symptoms you have been having just prove that. Forget about what your doctor says, and go back onto the gluten-free diet! He doesn't know what he is talking about. Also, just having a negative (possibly false negative at that) tTg test isn't enough to rule out celiac disease, he should have done the whole panel (five of them).

Your children's problems could very well be caused by celiac disease as well. You're not crazy at all to think that! Iam sure parents with little kids with celiac disease will chime in soon and give you more advice.

[SueC]

Welcome,

I didn't have ANY gastric symptoms. Mine were all neurological. Your doctor is misinformed

If you had it when you were one you still do! Your kids need to be tested. I have a 4 year old who had no symptoms. I had my kids tested as a screen after my diagnosis, so we found hers early before any problems occured. Behavioral problems are definately linked to celiac in kids. If your doctor won't listen to you please find another doctor!

I'm sure you will feel better going gluten free. I hope you find your answers.

[shai76]

Wow, I feel for you. That's gotta be rough. First if you can you should find a new doctor that has a better bedside manner. They are out there.

I can understand where you are coming from with the reflux and choking episodes in your youngest one. My son had the same problem since birth. It's gotten better. He's almost 2 and sometimes chokes on liquids still. But when he was an infant he choked on his reflux and it was so scary. Sometimes he would have more than 10 episodes a day, and his pediatrician didn't take us seriously until he had one in the office. That is when he panicked and got this, "quick, call a doctor" attitude. I was disgusted with him. Our new family doctor is great, and I hope you are also taking your child to see a GI specialist. Pediatric gastroenterologist are important for reflux treatment and to help with celiac disease in young ones. That's the person who could really help you the most. I strongly urge you to contact your nearest Children's Hospital and get a referal from your family doctor for both of your children.

[Guest nini]

Welcome to the board, first of all, yes if you were dx'ed as a child, you do have it, yes it can mimic ms, yes it can be neurological, yes you can even be overweight and have it (I was)... do you and your children a favor and just go gluten-free... you KNOW what the problem is, don't waste any more time with Dr.s so that they can put a permanant pre existing condition on yours and your childrens medical charts, just go gluten-free... get healthy. When schools need a note, write one. Put one on file stating it's a religions choice! Why not???!! LOL! (I'm half kidding about that) seriously, if your kids improve on the diet, you should be able to get their pediatrician to write a standard note stating that they are gluten intolerant and need to be on the gluten free diet...

[lorka150]

hello!

MS symptoms and celiac symptoms can mimic each other, but i wanted to let you know not to rule out MS.

my mother has had MS for thirty years, my aunt for 20. When my sister was fifteen, she had three MRIs because all her symptoms were clear - and we are very knowledgable about it in our family, obviously! anyway, they all came back negative.

she got tested periodically for the next few years, then travelled a lot. before she moved overseas, she got one more done and, lo and behold, brain lesions and MS showed up (ten years after her first MRI).

[wonkabar]

He gets very impatient and is about 6 months behind in his expressive language. He is very bright but just cant get some of teh pronunciation although he is constantly exposed to proper language activities. His outbursts at times are for very silly reasons(usually because he wants what he wants yesterday, although they are short lives. His listening skills also leave a lot to be desired at times. I had him assessed at a speech clinic and they said at this time he is within normal limits and I believe ruled out autism or any of those spectrum diseases based on his interactions and affection, eye contact, reality. etcetc.

Hi! Welcome!! You'll find lots of helpful information and supportive people on this board.

If you're still concerned about your son's language, "listening skills" and behavior, you can request a full educational evaluation through your school district's Child Study Team. This is a federally mandated process so it doesn't matter where you live...as long as you're in the US!. You need to put this in writing ( a letter). They will contact you about setting up an evaluation planning meeting to see if your son's issues warrant testing through the school district. If they do warrant testing, this would determine whether or not your son was eligible for Special Education Services at the preschool level. Since your son is now 3, you are legally entitled to follow this process via the public school system. Also, a speech and language pathologist cannot Dx or rule out a Spectrum Disorder. Based on their experience they may be able to identify some of the markers for Spectrum Disorders, but any type of Spectrum Disorder is Dx by a medical doctor (ie., neurodevlopmental pediatrician) after a thorough evaluation process. I'm honestly really surprised to hear that a S/L pathologist at a clinic "ruled out" a Spectrum Disorder, or anything else for that matter.

My son's behavior is just awful when he ingests gluten. Zachary is definately "bouncier", has a low frustration level and just generally fresh for no apparent reason when he has gluten. He has a high level of energy (can you sat at risk for ADD? ), but has a lot more difficulty staying on task and focusing when he's had gluten. My ped gi told me that the changes in behavior when he's on a gluten-free diet are "purely coincidental". I didn't buy that explaination a year ago, and I don't buy it now. I know my own son and what he was like before and now after going on the gluten free diet. I KNOW Zachary has a problem with gluten. If I waited for a doctor to tell me that, he'd still be sick and bouncing off the walls!! * Keep on following your mom-instincts whether is educationally or medically...you know your son better than anybody. *

--Kristy

[mommida]

Welcome to the board, first of all, yes if you were dx'ed as a child, you do have it, yes it can mimic ms, yes it can be neurological, yes you can even be overweight and have it (I was)... do you and your children a favor and just go gluten-free... you KNOW what the problem is, don't waste any more time with Dr.s so that they can put a permanant pre existing condition on yours and your childrens medical charts, just go gluten-free... get healthy. When schools need a note, write one. Put one on file stating it's a religions choice! Why not???!! LOL! (I'm half kidding about that) seriously, if your kids improve on the diet, you should be able to get their pediatrician to write a standard note stating that they are gluten intolerant and need to be on the gluten free diet...

At this point too many people are not getting diagnosed because the testing is just not accurate enough to catch every Celiac or gluten intolerant. Hindsight of our family's experience, it just was not worth having my child hospitalized for dehydration trying to maintain a gluten diet for testing. If you don't have a doctor's note for school, just tell them your child can get immediately ill vomit/ "D" after eating gluten and needs a liberal bathroom policy. (No teacher wants to deal with that and at least one teacher was sued for an embarassing Celiac moment a student had.) My children's behaviour is definately affected by gluten.

L.

[wonkabar]

At this point too many people are not getting diagnosed because the testing is just not accurate enough to catch every Celiac or gluten intolerant. Hindsight of our family's experience, it just was not worth having my child hospitalized for dehydration trying to maintain a gluten diet for testing. If you don't have a doctor's note for school, just tell them your child can get immediately ill vomit/ "D" after eating gluten and needs a liberal bathroom policy. (No teacher wants to deal with that and at least one teacher was sued for an embarassing Celiac moment a student had.) My children's behaviour is definately affected by gluten.

L.

I completely agree with all of this! There aren't enough doctors who are well-versed enough in Celiac Disease in adults, never mind childen! (And as a teacher, I can tell you that you are 150% correct...we don't want to have to deal with puke if we don't have to! )

We had the Celiac panel worked up but stopped there. We weren't willing to put Zachary through any additional testing b/c we felt it was far too invasive for a child his age (3 years old). We also didn't want to keep him on a "regular diet" and watch him continue to be ill for the sake of a biopsy. Going on the gluten-free diet was the BEST thing we could've ever done for our son.

My son is in pre-k, and I've told his teachers that he has a gluten intolerance (as per his ped) and absolutely, positively cannot have gluten--period. I've explained exactly what happens to him when he ingests gluten and have also given them an explanation of Celiac. I send in snacks and anything else they need related to food. Thankfully, everyone has been very supportive and responsive to his dietary needs.

--Kristy

[TCA]

I have been right where you are with both of my kids and your daughter's story is much like mine. My daughter ended up having a fundoplication done that came undone in just 6 weeks. They did the surgery to stop the reflux, but they didn't even consider what might have started the reflux to begin with. I started the gluten-free diet while breast feeding and the results were miraculous. START THE DIET NOW FOR HER!!!!! This might ease her symptoms enough so that she won't have to go as far as we did. I say this so emphatically because it was such a horrible experience for us. I still get angry thinking about it.

My son's behavior is also terrible with gluten. His walking and speech were also very delayed. He had to be in the 16th percentile to qualify for the state program mentioned in an earlier post and he was 17th percentile. He's also very bright, but can't get his point across sometimes. He's doing much better now that he's gluten-free.

Testing in kids under 5 is inconclusive. My daughter wasn't tested and my son's tests were inconclusive. The diet results are amazing, though. Besides, if you try the diet and nothing changes, what have you lost?

Good luck and I hope you all feel better soon.