Worst Story Ever!

[rez]

Sometimes I feel as if we have had the worst luck this past year with labs, doctors, and blood tests. My son has been battling for the past year with terrible mouth ulcers and stomach pain. Acid reflux and chest pain have been horrible as well. I'm so upset w/ the system I could just scream. :( My son was given the wrong blood test for Celiac back in August. We were told it was negative and started a gluten free diet anyway. Now, after 4 months, the correct test has been run and his tTG is slightly positive. It's 8.4 and the normal is below 7. I'm so upset and angry that the right test wasn't given months ago. I wonder if it would have been higher 4 months ago and has come down some after being gluten free for 4 months. I wonder if the doctor will say it's not "high enough" to say he has Celiac. He's still struggling at night. We've eliminated all dairy, soy, and gluten. If he has any dairy he has terrible stomach pain and breaks out with multiple canker sores the next day. His lips also become red and swollen. Is this allergy or autoimmune? We know he has a double copy of DQ2. Our appointment w/ the peds GI isn't until Jan 8th and then the biopsy will be set up from there. We also ran bloodwork on my 10 year old daughter and found out she's hypothyroid. I'm so frustrated and upset that I don't have the tTG from 4 months ago for my son. The peds GI said we will have to gluten challenge him for 2 months to make the biopsy accurate. I need the diagnosis for finality and peace of mind. It's such a huge life adjustment to put a child on this diet and I feel I owe it to him to know for sure. I hope they will scope him right away since he is still not 100%. If there's not evidence then we will be willing to try the gluten challenge, knowing that if he is miserable after a few days, we will quit and have our answer. Why does this have to be so hard. It's draining our entire family. Any suggestions would be helpful. Thanks, Kandi

[GFBetsy]

Just to let you know, I posted a reply to your other topic that also had some information about this post . . .

[Sophiekins]

Hi Kandi,

The milk thing sounds more like allergy to me than autoimmune.

If your son is in fact celiac (and I'm not saying he isn't), his TtG will have come down in four months gluten free. To ensure an accurate biopsy, you need to put your son back on gluten - it needs to be AT LEAST two months of heavy duty gluten ingestion to make the biopsy reasonably close to acceptable. . .six months is better. But if you put your son back on gluten, when he sees the ped GI they can do a shorter gluten trial and re-run the full panel of blood tests and do a proper physical exam while your son is in distress, making it easier for them to diagnose him, and possibly making a biopsy redundant (a good thing as many kids find them scary and painful). I would be careful in allowing them to scope him immediately if he has been gluten-free for four months - this is the kind of situation where you will not get a positive diagnosis, and some drs will take the absence of a positive biopsy as proof that your son does NOT have celiac disease. . .which is just going to make your life harder if your son does in fact need to be gluten-free. I know how hard it is to watch a kid suffer just for the sake of a diagnosis, but if you want the diagnosis, you are going to have to cope for a bit.