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Ginger Lynn
07-20-2011, 07:51 PM
...a child with Celiac Disese that wouldn't mind sharing with me their story leading up to DX? If you don't mind sharing and rather PM or Email me, that's fine. The reason I ask is because this is the next rabbit trail that we are headed down trying to find out what is wrong with my youngest. He has had health issues since day one. I hope it's ok to ask. Thank you.

Leslie Nelsen
07-21-2011, 12:47 AM
Hi Ginger Lynn,

My youngest daughter was recently dx with Celiac's disease. She had a routine blood panel done in early December. The test showed very slightly elevated numbers. (4 is normal and she was at 5) She had a biopsy done and we decided to wait 6 months to see if anything changed. Repeated blood work indicated that she was now at 86 :( and clearly did have Celiac. The biopsy indicated results consistent with Celiac too.

If you are suspicious, I would recommend that you go ahead and talk with your dr and schedule to have blood work done. If the tests indicate the possibility, you will then want a biopsy for a definitive dx.

Interestingly, I've since had all of my children tested. (Still need to get mine done.) One of them showed up as an 8. We will be testing again in 6 months to see if we have another with the dx.

I'm happy to talk, but am probably not much help since I'm so new to this journey myself. :group: I know it's hard facing something like this, but trust your mommy instincts and pursue something you suspect is wrong. Mom's are good judges!!! :group:

Ginger Lynn
07-21-2011, 06:13 AM
Thanks Leslie. Do you mind telling me what some of your DD symptoms were that made you get her tested? My DS has about 6-7 of the long list of symptoms and I am just wondering why none of this has been mentioned before. Thanks!

Leslie Nelsen
07-21-2011, 08:46 AM
Well, our situation is probably not like most people's experience. She had no symptoms and we apparently caught it at the very beginning. Eliana has Down syndrome and because of that is at a higher risk of a variety of other things - one of them being Celiac. She was just having a routine blood screen to test for that in addition to other things. Not probably very helpful.

I hear that it is often hard to dx Celiac and that it can often take time to do it. I think the symptoms can often mimic other things so it may not be the first thing considered. I would encourage you to test it out if you think it may be what your child is dealing with. Can you just ask for this screening when you set up an appt for your child? I did something similar when I suspected one of my children had diabetes. (Just called and as I made the appt I shared my suspicions and told them I would like a screening at the appt.)

:group: :group: I know its hard when your child is suffering and you are trying to get answers. Praying you found some soon!

Ginger Lynn
07-21-2011, 08:49 AM
Leslie, Thank you for your help, words, and most of all prayers. He does have an appt. this coming Tues. to have blood work done.