Seriously About To Cry...

[LaceyR]

I am so happy to have found this board. My daughter is 16 months and is stuck barely holding on to 21 lbs and is just about "failure to thrive ". Its 1 am and everything I have read about celiac FITS her to a T. I'm calling her pedi in the morning but I need suggestions on how to go about it or questions to ask. I want to go gluten-free for a week just to see how she does. I know she has to have gluten in her system for testing so would it be smarter to just wait for the results? I have heard testing this early isn't always %100. HELP PLEASE!

[MitziG]

Definitely test FIRST. If she responds to gluten-free, putting her BACK on gluten will be very difficult for you. She may have a violent reaction to it (bad rashes, vomiting, etc) even after only being gluten-free for a week.

Yes, testing can be notoriously unreliable, especially in children, so don't let the results influence you to not try the diet. If she is celiac, a dx will be important in getting her accomodations in school, and in helping her understand later why she has to stick to the diet, 100%, no cheating, ever. For the rest of her life.

You will need to be her advocate. Few doctors have much understanding of celiac, even of what tests to use. You will most likely be dismissed as an over-protective mother or she will be prescribed meds. Go with what your gut it telling you and stand firm. Insist on the full celiac panel, which you can find on this site. (You will probably have to tell the doc what tests to run. Most do only 1 or 2 of the older tests)

If she has a positive blood test, she has celiac. Period. But a lot of docs won't dx with bloodwork alone. So they will want to do a biopsy. She has to be eating gluten for that as well. Biopsies are also hit and miss for detecting celiac. Again, do not let the results sway you. When the biopsy is done, start her on a strict gluten-free diet. It may take several weeks before you notice a difference however. Everyone is different. Take the time to read up on hidden sources of gluten, because if she gets even a teeny tiny bit, she will still react the same as if she were eating it intentionally. Lastly, if gluten turns out to NOT be her problem, start looking at other food intolerances. There is a reason she isn't thriving, and it most likely begins on the plate.

Hope this helps!

[LaceyR]

Thank-you!!

[mommida]

Start working with a pediatric gastroenterologist. There is a list of disorders that have very similar symptoms. stomach pain/ distention, "D", constipation, vommitting, and low weight gain/FTT, dark circles under the eyes

Celiac

parasites

congenital defect

hernia

Eosinophilic Esophagitus (or other places of the GI track)

H. Ploryi

the list is longer but that should be enough to realize an accurate diagnoses would be the best for your child. Understand it is possible to have more than one condition at the same time. For example my daughter has Celiac and Eosinophilic Esophagitus. There is now a proven connection between the two conditions and hopefully at the time a patient is diagnosed with EoE, they will be immediately tested for Celiac.

Your testing should include blood test panel, an endoscopy with biopsy, possibly genetic testing. Make sure you discuss with the doctor that biopsies are being taken and an amount of what the doctor plans on taking BEFORE the procedure. Remember some tissue appears "normal" and needs to be examined by pathology for a proper report. Don't let a doctor say it looked good so there were no biopsies taken.

The only thing that you should do before the appointment is keep a food journal. Amounts of food, time of consumption, symptom check, vomit?,"D"?, constipation.

Get your appoinment ASAP, because if you narrow done a food "trigger" you will not want to feed it to your little one but you have to for a diagnoses.