New With Questions

[meeshyo]

Hi Everyone! This board has been so helpful in my quest for answers. My daughter Madison is 16 mos. She has been "rapid breathing" since about 3 mos. However, she showed NO other symptoms. She has been on the small side with a ravenous appetite. Around 11mos, she began respiratory problems. She was hospitalized with pneumonia and the pediatric pulmo.was certain she would test positive for CF. Fortunately, she did not. For the last 5 months, her lungs are stilled filled with secretions, but she seems healthy. She has dropped to the 3rd percentile in weight despite her ENORMOUS appetite. She poops A LOT and it smells awful. They did a blood test for celiac and only one (in the panel) came back positive. Apparently, it wasn't the "most reliable" one, but it did give indication of possibly having celiac. They re-ran the bloodwork just to be sure. I know it was supposed to be under 30 and hers was 80. They have scheduled her for an endoscopy and bronchoscopy hoping to find some answers. Anyone here with any advice/similar situation???

[Guest Robbin]

Hi and welcome. I am sorry you are going through so much with your little one. If she had a positive on any bloodwork, it is my understanding that she has celiac. A false positive is not possible. This is only speaking from my experience---as a child I constantly had lung congestion, sinus infections, wheezing, etc. I think that coupled with hayfever/allergies is common with celiacs. Just a couple of questions--does she have milk/dairy intolerance too? Is she gluten free now? Some drs. dx. only by bloodwork results and some dx with merely dietary response. Speaking for myself, I would do the bronchoscopy and not put her through the endoscopy, but that is only my opinion --maybe the dr. is looking for something other than celiac as well, so you should do what you think is best for your child. Take care and I will say a prayer for your little Madison.

[TCA]

Make sure they take plenty of samples with the endoscopy. It is hard to get reliable biopsies in kids under 5. If you get a positive, you can believe it, but there are often false negatives. You might want to be ready to undergo a diet trail no matter what. This was the story with our son. He was on nebulizer treatments 2 x daily and now has no issues since going gluten-free. Good Luck and I pray Madison feels better soon!

[mommida]

Many people have had the same type of symptoms (chronic congestion) for Celiac.

My daughter's blood panel showed the same elevation, of course it was the "least" reliable one for diagnosing Celiac. She bacame too ill for the endo w/ biopsy. She was genetically tested. Positive for two Celiac genes. The ped gastro. has diagnosed "probable" Celiac because we didn't do the endo.

You are stuck with the "it's now or never" situation for the endo w/biopsy. Understand the results are not that reliable, but you will probably never let her eat gluten again if you change her diet and she improves. If the damage it not there from ingesting gluten, she will never have a conclusive diagnoses, at least to most of the medical professionals. It may be harder to keep her on the gluten free diet when she is a teenager if she doesn't have the official diagnoses. Just some things to consider. Ask the doctor who would perform the procedure how many biopsies?, have they ever diagnosed Celiac before? what lab are the specimens going to? and any other question you might consider in the full explanation of every part of the proceedure.

L.

[meeshyo]

Thank you, thank you, thank you! I would have NEVER connected her respiratory issues with celiac, but maybe there just is the connection. She NEEDS to have the bronchoscope done, we have battled with her rapid breathing and lung secretions for long enough. They are going to do the endoscopy at the same time, while she is already sedated...so hopefully, it won't be too bad. I really hope that we can get a conclusive diagnosis. What about her poop...it usually is of "mushy" consistency and has a rather foul smell. Also, when she was hospitalized at 11 mos. her stool came back with funny results in regards to "tripsin." They are re-running that stool study this week. Anybody know what this is? Anything related to celiac?

[meeshyo]

I just saw the doctor and Madison's IGG bloodwork came back at 73.2 where anything greater that 20 is positive. Now I just have to wait for the endoscopy and bronchoscopy at the end of the month...