Positive Blood Test Today. Looking For Help...

[my'smom]

Hi, my 22 month old has been losing weight the last 5 months. She has always been under the 10th percentile so they were really worried when she started losing weight. We've been doing lots of testing for different things and the Dr. finally called me this morning saying the blood test came back positive for Celiac. I'm really nervous about the biopsy they have scheduled. Just looking for some feedback from some parents who might have some experience with this. Thanks!

[scarlett77]

If you haven't already, go read the "Endoscopy and Anxiety" thread on this board. A lot of us parents have put our experiences with the biopsy on that thread. My son was diagnosed at 22 months by way of blood test and biopsy. The information is overwhelming I know. The diet seems impossible at first, but it is not really that bad and honestly my whole family eats better now because of it. One thing that had a very profound effect on me was reading a blog by the "Gluten Free Girl and the Chef". Google it. It helped me through a very difficult time as a mom.

This forum is also wealth of good people and information. Just ask away...

[Kelly&Mom]

You are in for an adventure in food Things have improved so much as far as what is out there for those of us with celiac disease. My then 13 yr. old daughter (now 14) was so thin, miserable and I was so glad to finally have a diagnosis and one that wasn't fatal!! Then I got diagnosed and although I do have occasional sourdough bread pangs, I'm glad because she has someone like her who understands what she is going through. There are times like our recent vacation when I feel really bad for her because we don't have our familiar stores to supply us with food we can eat (she also can't do dairy) so she couldn't have yogurt (no soy brands) and ate dry cereal for breakfast several days...... but we celebrate when we find something really good or another restaurant develops a gluten-free menu and we can feel "normal."

The biopsy is very simple, not painful and quick! Don't be surprised if you find a few more food allergies or like my daughter, she has irritable bowel syndrome. I tell her the gluten-free diet is mandatory, everything else is up to her. She knows what upsets her stomach so she gets to make the choice on dairy, onions, peppers, watermelon, etc.

Parties are difficult but for now that won't be too much of an issue. Several of my daughter's friends actually make things for her or provide gluten-free food at their parties which is amazing You really find out who your friends are.

Still trying to train the husband as to what cross contamination is and which places we can eat at. Hang in there

[my'smom]

Thanks for the info. I read through that other thread and it definitely makes me feel a lot better about the biopsy. I guess it's just hard when you can't explain anything to her because she is too young to understand. Right now it is hard to get her to eat any food at all. I think she just associates all food with not feeling well. Poor girl. Are there any good recipe books that you use to plan meals?

I appreciate all the kind words. Thanks again!

[CeliacMom2008]

What helped me most in the beginning for meals was to make a list of what I was already making for dinners or eating at restaurants and see what could be make gluten free with some minor adjustments or none at all. I was very surprised to see that I could still make almost everything I was before with very little changes. Pot roast, lasagna, spaghetti, roast chicken, grilled meat...you can still do what you were doing before, just with some different ingredients here and there (like gluten-free pasta instead of wheat based).

[kerrig]

My Son is 10 and has just been diagnosed - based on the high readings from his blood test, we decided to not have the biopsy - I have not heard of any results where the blood tests are so high and the biopsy comes back negative. We did see the peadiatric GI who has said that the blood tests are so good now and that even if we did not have the biopsy - he would enrol us in the celiac patient program.

[scarlett77]

What helped me most in the beginning for meals was to make a list of what I was already making for dinners or eating at restaurants and see what could be make gluten free with some minor adjustments or none at all. I was very surprised to see that I could still make almost everything I was before with very little changes. Pot roast, lasagna, spaghetti, roast chicken, grilled meat...you can still do what you were doing before, just with some different ingredients here and there (like gluten-free pasta instead of wheat based).

This is what I do too. I just make whatever I used to make with some adjustments. If I am unsure how or would like recipe ideas for a certain dish I just google "gluten free ______". My son did the exact same thing and was drinking more liquid because he just didn't want to eat. At first because he was so underweight we were concerned about getting calories and fat in him so the GI told us to give him only pediasure to drink. We had to limit him to 2-3 bottles of it a day though because we also wanted him to eat solid food. If it was hot I could give him a little bit of water. By limiting his liquid and giving him safe food he slowly started to eat more. Now almost a year later he is more willing to even try new foods. Be patient and start off with simple 1-2 item meals of things that she used to at one point like to eat (like french fries and chicken nuggets for example). The chicken you can use some gluten-free flour mix, salt, and parmasean cheese (dunk the chicken pieces in an egg/milk combo first). I fry my nuggets but i'm sure you can bake them if you prefer. And homemade fries are soooo much better!