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Guest tduffy

Need Advice Or Help! Could My Baby Have Celiac Disease?

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I hope you find answers soon. It took 3 weeks for the D to stop with my son, so don't give up on the diet too quickly. It takes some people months. The biopsy really isn't too bad, except that it is often for naught since it frequently gives false negatives. I will pray for you to find out what's going on soon.


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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It sounds like you have a doctor who wants to be thorough - please work with him and at the same time be assertive. You can refuse the biopsy - explain why - that you feel it is too invasive, that you are worried etc. I read and re-read the post before I replied. You have a child with an as yet undiagnosed condition - i know what that feels like......

Please know that my heart goes out to you - it is so hard when your child is sick and all the doctors keep talking about is more tests. When a baby is involved - it is different than an older child or an adult - it would be negligent on their part of they didnt test for cystic fibrosis or other conditions that seem implausible.

Babies that have long lasting symptoms or are staying ill ...they need to test for metabolic conditions, genetic conditions.... all sorts of things they would not test an older child for - simply because those conditions would have shown up as a baby...

I hope I am making sense....

For myself - we opted for the biopsy - but both children suffer from concurrent medical issues and it could have been celiac or another autoimmune condition - we didnt want to be treating the wrong disease.

When our daughter was little she underwent years of testing an specialist visits because no one knew whay she couldnt walk or why she had global delays. We ruled out a lot of conditions but it got repetitive to hear - this test was normal so now......

Work with the doctors, dont do things you are not comfortable with but keep the dialogue open, dont be afraid to ask why certain tests are bieng ordered - is it because they suspect a certain disease or is because they need to narrow the list of possible diseases? The symptoms you describe could be celiac or a food allergy (like dairy or soy) or they could be from a number of conditions that happen in babies.

Many of us have had negative experinces with doctors - some doctors are dismissive, accusatory. not caring etc..others are very good. I cant see how one can fault a doctor for being thorough and not wanting to just say celiac without making sure there is nothing else.

A mom in the town I live in - had a failure to thrive baby, not growing, diarrhea, vomiting, weight loss, drinking lots - many symptoms are on the celiac list of symptoms. Doctors were thorough and found the baby had an inborn error of metabolism , he would have died if the mom had refused testing and just gone gluten-free. When it comes to pediatrics - they NEED to run many tests...

Wanting to hospitalize him means they are taking you seriously and they see that your baby is sick and they need to find out why


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Guest tduffy

Hello everyone,

I just wanted to give you all an update. We took Aidan in this past Friday for a one week post check up with the GI specialist, mainly for a weight check. He had taken him off soy to see if he improved at all. We put him on Elecare last Friday (one week ago this past Friday) and took him off soy. I hated the Elecare as it was full of sugar and Aidan couldn't tolerate it (threw it up when I followed the instructions for preparation- tolerated it when I cut the dose in half, but it was still awful! As it turns out, he lost weight from last week. Six ounces in one week. We felt terrible. His diarreah had improved a bit over the week (though didn't completely disappear) but I guess there is more going on inside then we realize. We both finally decided to go forward with the endosopy and sigmoidoscopy. The doctor will be looking for several things when he performs the procedure, which we felt better about. We have exhausted every non-invasive option and Aidan is still losing weight, so it is time to allow the doctor the opportunity to view our little guy inside and figure out the best course of action for him going forward. Poor little peanut. We had his first birthday party yesterday and he had so much fun, but it just got me thinking about the last year and how well he was doing and how this little guy was thriving while I was nursing and then suddenly everything got crazy. Anyway, nothing we can do to change that now and I certainly can't nurse him forever, so eventually we would have discovered this I guess, but I still feel terrible. So I will keep you guys posted. They are doing the procedures on Tuesday and I will let you know how it goes. Say prayers for our little guy. Take care and thank you to everyone.

Trish

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Thanks for the update Trish.

Will be looking for the next one.

It will be nice for you to get some answers.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Sorry it's taken me so long to reply. I hate to hear Aidan still isn't getting any better. Hopefully, they can find out what is making him so sick. My little girl is 13 1/2 months, and she is still going through all of that.

I know exactly how you feel. But, I have faith that my little angel will get better, as will Aidan.

As far as what happened to me...you can read the story a few pages back on the forum....it's posted as Skocking Story #2. A short version is that a doctor accused me of having Munchauesen by Proxy....which is a crazy disorder where a mother intentionally hurts her own child to get attention. Since a doctor accused me....tey came in and took her from my custody during her last hospitalization in a hospital 4 hours from my home where we had been for 3 weeks. I had to leave her there for 2 weeks and ten she came home to foster care while we battled this absurd accusation in court for 30 days. I got her back 1 day before her 1st b-day. It was horrible...and I would never want to see anyone go through the hell that we did.

So, I wish you and your son the best....and I will be praying for you both.

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