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Hi, Suspect Cd
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Hi. My name is Jennifer. I have a 2.5 year old son who I think might have this. Let me give you a little back ground info.

Brayden has always been a "sick" child. He has had ear infection on top of ear infection. Finally at 1 year of age, we had tubes placed. Which are still there today. Going on two years! Unusual to say the least. This cured the EI problems, for the most part, but not others. At 9 months of age he was yanked off formula totally and put on regualr soy milk. We saw a slight improvement with the "reflux." Since one year of age we have had three to four different EI's, Exzema, and numerous cases of conjunctivitis. I realized a deeper problem was the underlying cause of all this. I had him allergy tested at 2 years of age. He came back with a 0/1 or 1 on most of the seasonal and envior. allergens. However, his IgE score was way above a normal one. So, I had them run the foods. RAST Test. The Dr. called me back as soon as he got the reults. His advise get him off dairy..ASAP! He told me he was also allergic to wheat, egg white and coconut. But I did not need to difcontinue use of them. About 6 months ago, right after we got Brayden off the dairy, I noticed his stools were very loose and stinky. I chalked that up to the fact he was stricly on soy products now. Then, I noticed that he had watery, mucosy stools every 3-4 days. That has since progressed to him vomitting and now severe stomach cramping. I called the ENT/Allergist and he referred me to a pedi GI. At first he was reluctant to do it as he thoguht Bray had a bug. But, I have told him, D does not last for months and months. So, he told me to scale back on the wheat and Gluten, and he will make an appt. with the GI specialist.

So, last nite, I gave him some chicken tenders, they had wheat in them. With in 1 hour he was having cramps and the big D. He even paces and cries now. I am sure that he has this, or some form of a gluten protein allergy or disease. I just want my normal happy child back. Then one I lost when he was 9 weeks old. LOL!!!

I am not sure if I should take him compltetely off gluten, as we have not seen the specialist, or wait till after they do blood work to see. I hate the fact that I am putting him in pain when I have an idea, very good one, of what is causing it. He won't even go to the potty anymore b/c of this.

Also, his behviour....OMG.....it is awful. And not, it is not normal 2 year old behviour. He bites for no reason at all. I had thought that maybe he was Autistic b/c of the biting social interaction, etc. But, I am thinking he is biting b/c he is in pain and does not want to be messed with.

Thank you for "listening", and please, share experiences with me. Let me know if I am way off base, or have hit the nail on the head! Thanks! :)

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If you want the best shot at accurate tests for celiac do NOT take him off gluten. See if somebody will run the blood tests immediately. All they have to do is take blood and send it to a lab that does the celiac panel. Your regular doctor could do this.

It certainly sounds like he could have it.

richard

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Yep, it sounds like it BIG TIME!! Poor baby! Tell your doctor you want the tests done immediately. There is no excuse for the testing process to be dragged out. Keep harping at your doctor, if you have to. Your son's health is at stake!

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Thank you. I will be calling the Dr. today. I gave him some toast this morning....before coming here. sitter just called. He was in the back ground screaming in pain saying his tummy hurt. She made a comment on how bloated his tummy is. She said he had a super stinky BM and was pacing. I told her he is gonna have anotehr one, and sure enough, while on the phone with me, he did. He poots, and bam, the smell hits you, and he had a loose, mucousy stool, that stink to hi heaven, and he is fine. However, he won't eat now cuz he says it make shim sick.

It i slike this has been building up, and now all of a sudden, I can't stop it. However, I got y'alls list....I was lurking through soem post's, and have it printed off. One for me, one for the istter, and one for his Step Mother. Yes, I am single! LOL!! :)

Thanks!

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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