New-14 Month Old Just Diagnosed!

[momof2]

I have been peeking in on this forum since my daughter has been through testing the past 3 weeks. We found out earlier this week, that yes, her blood tests came back positive, and she has Celiac Disease. Her biopsy is scheduled for next week, but it is a no brainer in our book. Both tests came back positive, and since changing her diet to gluten-free, her poops have changed, personality, and she has started smiling again. This website is a Godsend! I have learned a lot from all of you, and the more we learn about this diease, the easier it seems to be. I just thought I would introduce myself, because I am sure I will be on here often! My 4 year old daughter is getting tested, as well as me and my hubby. My dad is also getting tested, since he has been having symptoms for 2 years now, and the Dr.'s keep putting him through tests, but never has he had a celiac test! We bought the book by Danna Korn, "Kids with Celiac Disease." I can't put it down! It is a must read for any of you starting out like me, who can use any info possible!

[Boojca]

Just remember, if you've already changed her diet then her biopsy may NOT come back positive. Our Pedi. GI guy told us not to change anything until after the biopsy so that everything would test correctly. He just so wanted to be able to give us a "true" diagnosis.

My son is 2 1/2, isn't it sooo horrible that they can't just TELL us what they are feeling? Or, if they have a "reaction" what they ate? My son had wicked gas pains the other day, and I don't think he had any gluten but that was my first reaction. Never mind the fact that he NEVER had any symptoms like that pre-diagnosis (our only sign was that he dropped 4 lbs between February and May and suddenly became VERY lazy....)

I loved the Danna Korn book too, as did my mother and mother-in-law and the daycare provider! My mom bought her own copy even before I had mine, and I bought one for daycare.

My best advice? Keep coming to this board. It's a GREAT resource and support.

Bridget

Georgia, VT USA

Mother of Brennan, 2 1/2, celiac disease since June 2004

[flagbabyds]

Put her back on gluten if you are going to do the biopsy, if she is already feeling better that is grreat but if your doctor wants to have the ibopsy then do it, it is so fast, so simple, and very easy, this is cxxoming from a 14 yr. old who has had this about 5 times....... If she feels better and your doctor doesn't need you to have the biopsy then the blood tests and a dietary improvement should be enough, The healing process has already started and then it might not show up in the biopsy because it can heal very quickly even though you have symptoms for a while there--after...

Email me or PM me with questions

[HeatherMelissa]

Just wanted to say Hi. I have a 2.5 year old with Celiac also!!!

[hjkmatthews]

Hello!

I just wanted to say hello and welcome to this 'wonderful' place. I really is a Godsend to have people out there with Celiac to better understand what it is all about. I'm pretty new as well, my daughter was diagnosed in February, and my hubby, mother, and myself are getting tested very soon. Good luck with everything, and if you ever have questions ask away!!! Everyone here has already taught me so much in the few weeks I been a member, it is an amazing group of people!

[momof2]

Thanks for the introductions! This is such a scary thing for my family to be going through, and having this forum available makes me feel more at ease about this diagnoses. The GI Dr. first said to put her back on Gluten for a few weeks and then do a biopsy, but then when I told her my reservations on going back to the "old Abbey". the sad, hurting, bloated, and pooping every hour girl, I said I didn't want to do it. Then, she told us that having her gluten-free for only 2 weeks won't make a difference. She said that her intestines can't repair themselves that quick. So she said, keep her gluten-free, and we will rush the biopsy. BUT I have been thinking that it would SUCK to have the biopsy, and it come back negative because her body repaired quicker than the GI Dr. thought she would, so then we would have to put her back on Gluten and do another biopsy. Which brings me to my next question...why have some people had more than 1? I thought that 1 test is all it takes, and is 100% accurate? Why have a repeat?

[AmyandSabastian]

Welcome. I have a 8 month old (8 months today!!) who has celiac.

[lovegrov]

Your child's intestines might repair that fast but if your doctor is experienced with celiac, residual damage should still be visible. You can also have positive blood tests but no visible damage, the person doing the biopsy can fail to take enough samples, or the samples that are taken miss the places where the damage happened. So a biopsy is no slam dunk. You need an experienced GI and an experienced lab.

But even if the biopsy is negative, why go back to gluten and have another? Your child might have to eat gluten for as long as three months. If you have two positive tests, I believe that means there's a 98 percent chance she has celiac disease. Add in the improvement on the diet and I'd say that's about 100 percent.

As for two biopsies, for some reason they used to put you on the diet to see if you improved. If you did, they took you off the diet and did another biopsy to see if damage returned. Either that or they left you on the diet and did another biopsy to see if the damage was gone. Now, improvement on the diet is considered proof enough. Generally speaking, they don't do a second one unless you DON'T improve.

After all this settles, make sure you, your husband, and any other children (if any) get tested, even if you don't have symptoms. I barely had any symptoms at all until I was so sick I had to be hospitalized, and my father, who was positive, had no symptoms at all.

richard