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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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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