jdoylemd

Title says it all. My MIL wants to attempt some from scratch gluten-free bread in her new bread machine. I've read some good gluten-free bread recipes but I need one that will definitely work well in a breadmachine. The bread will be for my son to have mostly nutbutter/jam sandwiches on so it can't be super crumbly. And any tips on breadmachine settings for the particular recipes would also be helpful. I know I ask a lot, sorry! Thanks in advance!

Jen

Mistyk- Dr. Safta is Dr. Fasanos peds gastro associate. I think she does all of the peds biopsies. Dr. Fasano is great and I was lucky to have him as a teacher in the past and be able to consult with him via email prior to coming in. You are very lucky to have gotten your LO in to see him so quickly. With all of his research, teaching and clinical duties he is busy but he still manages to be great to his patients! So many other doctors could learn a thing or two from him!

When I wrote UMMS I meant UMAB. The peds surg nurse called today and let me know he'd be getting versed in the bottom first and then they'd take him back. I asked if I could take him back myself but she sounded doubtful, asking why I'd want to see that. Its not that I want to see that but I don't want my son seeing some stranger as he goes down. And I'm well aware that the versed will make him not care but I do.

She said I could talk with the anesthesiologist morning of. Who knows.

I gotta figure out what I'm gonna feed him afterwards. Time to go shopping I suppose. Fun Fun.

Thank you everyone for your reassuring posts. I will be sure to update ASAP.

Jen

Claire, thanks thats great info. Did they not allow you to be there for the start of anesthesia or was that by choice? I really want to be there. Do you recall if they gave her valium or anything first to relax her or did they do gas then general(IV) or just general (IV). DS does not do well with needles/being held down.

We're about 40mins away too...in bowie, md area. They already have us set to arrive ~6:30a-7:30a. Guess I'll be shopping that night. Fun

Thanks for the responses. Though I will try not to worry, as a parent, we all know thats impossible. I'm hoping that the biopsy comes back conclusive. I know there is risk in false negs, but for when my son is 12yo and asking why we put him on this awful diet, I'd like to be able to say...your biopsy was positive- you have celiac for the rest of your life instead of ....well you had one blood test that indicated celiacs. And it will also help convince my hubby that the diet needs to be adhered to 100%.

I was planning on doing the mask practice but forgot to get a mask from my moms house last week. I doubt it would help though because the whole environment- white room, white coats, hissing mask, beeping, etc will probably freak him out. I will just have to remain calm for him. I wish I weren't pregnant so I could take a xanax! jk...sort of.

Bonnie, I'm so sorry your daughter is still having weight/feeding issues. Sounds like you've been through a lot. My biggest fear was that my son would need a feeding tube at some point...they are hard to get rid of.

So did you guys all go gluten-free right after biopsy? Did you wait to shop until after biopsy or did you go before hand? Whats the deal with oats- my son loves oatmeal- whats a good brand?

I've heard there are issues with xylitol in some people? We use spry xylitol toothpaste, is this gluten or just another intolerance common to celiacs like milk?

Is there a list somewhere of ingredients to blacklist/be on the lookout for for hidden gluten? I know rye, barley, wheat, spelt, gluten, MSG. Any others?

What do you guys order when you go out to chain restaurants or should I say which are the good restaurants out there? I've heard Chipotle is a good bet if you ask for glove change and avoid the soft tortillas. My DS lives on their chips guac and cheese! TIA

My 22mo son is only gliadin IgG positive but also has low IgA which likely skewed his other tests to be falsely neg. I just saw Dr. Saftka at Univ of MD yesterday and she said that in kids 3 and under, +gliadin is very specific of celiac disease but biopsy is still gold standard for diagnosis. DS has his next thurs. I can let you know but we"re expecting +celiac disease

My 22mo son is having issues gaining weight and growing (now back up to 24lbs, 34inches). He has some constipation issues and the typical celiac look. Of his blood tests only the gliadin was positive, which Dr. Saftka (Univ of MD) says is highly indicative in <3yos. His IgA was low so his IgA TTG, EMA, etc were most likely falsely negative.

We saw Dr. Saftka yesterday and she scheduled an EGD with biopsy for next thursday. She says they try to do light sedation and try not to intubate.

Just want some support and advice from parents who have BTDT. How long did it take for biopsy results to get in? Were you with child when they went under? Will the let me be there with him when he wakes? How long will he be groggy? How long should I expect it to take?

He still nurses 3times a day and will have to be NPO after midnight until the 8am or 9am procedure time. He usually nurses in the morning but we can't When can I nurse him afterwards? Are they gonna give me a hard time about this you think?

I know thats a lot of questions, but I'd appreciate any help. Hes so young and I hate to put him through this but we need a definite reason for his weight loss. TIA