This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My husband hunts, so most of the meat we eat is organic. We live in the country, so organic is something that is a way of life. I hate feeding him the nitrites too and get the hormel natural bacon a lot to try to help that. As for artificial additives, most of those are cut out due to the other things he cannot eat, so he gets very little. I bake all of his bread, etc, so I know he's getting good stuff.
The problem with the carbs is the fact that he will eat absolutely no veggies - none. It is soooo frustrating because we have garden veggies on the table every night and it is a constant battle. We made him eat a carrot the other night and he threw up. I have figured out how to disguse eggplant as a pizza crust so he thinks he's eating pizza instead. But that is it. He does good with fruits, though. I read the book and understand SCD. We may have to go that route, but for now, GFDF seems to be working.
Thanks ladies. I guess Cole must be pretty sensitive since he was only mostly getting what I baked with. The only food he will eat is gfdf pizza, bacon, gfdf pancakes, fruit, Gluten-free Casein-free cupcakes (mostly icing), kinnitoos, and occasionally some grilled meat. My daughter eats just about anything and I cook all the time, so it's not a matter of only being exposed to junk. It's very exasperating, but he's lost so much weight that for now we're just trying to get him to eat anything. We'll worry about being more nutritious later.
It's funny you mention SCD. I had just read the book and was considering doing it as the next step if GFDF didn't work. Thankfully, it has worked so far, but I haven't forgotten about SCD if it does become necessary. I really do appreciate the advice. Another problem I have is the fact that he is sooooooo picky. He's down to just a handful of foods that he will eat, so it is a daily struggle to get healthy foods down him.
Thanks for the advice on pizza. I did something similar the other night and he ate it well. Thank God for bacon!!!!
Thanks for the info. My son only ate cheese on pizza anyway and NO other dairy, so the main change has been in the way I cook. My biggest question is about how sensitive CF individuals tend to be. I know if I even touch gluten and touch his food, he will get violently ill, but I just don't know with casien or lactose. How sensitive are you and your daughter?
I took my son off of dairy in every form the day i started this post. He has improved and feels much better, thankfully. Now I'm trying to figure out what to feed the child. I have been dairy free before while breast feeding my daughter who had a milk allergy, so I have a pretty good grasp of what to avoid, but I'm having a hard time with understanding his sensitivity level. Could it be lactose, casein, or both? I took him to an allergist and everything was negative, but he said he thought it was a lactose issue. I know from being a part of this forum that casein also causes big problems similar to celiac. I don't know if I should try one or the other or just keep on being 100% dairy free. I also wonder if CC issues would be as serious with dairy as they are with gluten.
Any advice? I'd love to hear how casien or lactose impact other people's GI system and how they stay healthy.
I had TERRIBLE "growing pains" as a child. I was tested for everything from RA to leukemia, all negative. i was told it was in my head and to deal with it. "Take a tylenol and you'll outgrow them." At 29 I still had them. My daughter was born and I went gluten-free while nursing her because of suspected (later confirmed) celiac disease. After a few months of her thriving I noticed that I was not hurting for the first time in my life. When I now get an accidental glutening, the pain is almost unbearable. A friend has the same symptoms and went gluten-free with the same miraculous results. I never would have suspected gluten, but there is no doubt it was to blame for my lifetime of pain. good luck in assessing the problem with your son. It could be anything, but it was gluten for me.
I have been very active on this forum in years past, but motherhood has prevented me from spending hardly any time on the computer period lately. My 5 y/o son has been gluten-free for over 2 year now. the past few weeks, he has started getting sick again, having loose stools and lots of vomiting. He has probably vomited 2-4 days of every week for the past 4 weeks. At first I thought it was just a recurrent virus, but he just started vomiting again and I'm starting to get really concerned. My mommy instinct is telling me that dairy could be the culprit, but I have no particular reason to think that. His behavior has been worse lately. He's been very emotional and had a lot of outbursts. I don't know if it's related or what. I'm 99.9999999999% sure that it's not recurrent gluten exposure since I only cook gluten-free and we seldom eat out. I just thought I'd see if anyone else out there has seen anything similar and if so, was it related to another food issue?
Thanks to all of you, Megan's party was a huge success!!! She raised over $2,000.00 for Ronald McDonald House!!!!! We're waiting on a few donations that we've been told are in the mail, then we will deliver it.
It was such a blessed day. The weather was perfect and so many turned out to help us celebrate. Megan was on cloud nine as everyone took turns taking her down the 20 ft. slide. She has NO fear!
You can go to this link to see pictures from the big day. It was so much fun!!!
We also appreciate all of you who couldn't come, but sent such sweet cards and donations. It was quite a day and we hate you missed it. We really do appreciate your support of RMH, though.
Megan didn't come off the tube last week because she had a bit of a cold and didn't want to eat much, but we're taking our time and not pushing her too hard.
She was released by her Early Intervention Speech Therapist today.
Her next heart cath is scheduled for Sept. 5. Things can always change, as we've learned, but that's the date for now. Thanks so much for you continued prayers. We see the results every day!
Hey everyone!!!!! If I thought all of you could make it, I'd find a way to feed all of you! Sorry I don't post much anymore, but Megan has reached the phase where she screams every time I get on the computer. Hopefully she will get out of it soon and I will be able to be on more again. I miss all of you!!!!! Just posted to caring bridge and copied it in below. BTW, Travis is doing great. Thanks for the prayers for him too!
Hugs - Tanya
Megan took her first steps Tuesday!!!!!! She is doing soooooo good. She also saw one of her feeding therapists on Tuesday and was pretty much released except for a follow up visit in Aug. Melissa, her therapist, said she had never seen a child progress as fast as she has. Today she saw her physical therapist, Rhonda. She's coming back in a month and then will go to once every few months once she's walking good. They're all so pleased with her progress.
She's down to 2 hrs. a night on the feeding tube and we hope to turn it off next Tues. We'll weigh her then and as long as she hasn't lost weight, we can turn it off!! The button will stay in her tummy for a while, though, to make sure all goes well.
We hope all of you can make it to her birthday party next Sat. We're all excited about it and hope to show her off a little. It's such a blessing to see the results of your prayers!
Just updated caring bridge - hope all of you are doing well!
Sorry I haven't updated in a while, but our lives have been as crazy as usual. Megan is doing WONDERFUL. She's down to about 4 hours a night on her feeding tube and is eating so well. We're gradually decreasing her feeds and if all goes well should be eating entirely by mouth within a couple months!!!!
Since I have written last, we have a new arrival in the family - Travis Garner Andrews. Jarod's brother, Luke and his wife, Cotrena delivered him last thursday. He is 14 weeks premature and weighed in at 1 lb. 10 oz. You can follow his progress at caringbridge.org too. His site name is travisandrews. Please be in prayer for him and the family.
Meg had a checkup with the GI and cardiologist at Vandy last week. We intended to update then, but were busy with Travis. They were both amazed at how well she is doing. She was supposed to have a heart cath in the next month or two, but is doing so well, they decided to put it off until Sept.!!!
She is down to one therapy visit a month with each of her 3 therapists! She is ALMOST walking and may be by her birthday. You would never know she has ever had a problem to see her now. God is SO GOOD!!!!!
We plan to celebrate all of this good news and thank you for your prayers and support by doing a big 2nd birthday party.
You're ALL invited to Megan's 2nd Birthday!
April 21, 2007
Lacey's Spring United Methodist Church
No gifts, but donations will gladly be accepted for Ronald McDonald House of Nashville.
We will have lots of games for the kids and fun for adults too. Please join us in this true celebration of what God can do!
Our kids were similar and we did go through all the testing, with inconclusive results. I was told they were fine and not to worry over the diet. I did anyway and now the kids are thriving. Testing in kids under 5 is very inconclusive, anyway. I wish I had followed my gut a year before I did!
My son also had inconclusive bloodwork and ended up having 2 separate scopes about 1.5 years apart. Neither showed anything. We ended up putting him on the diet because he kept getting sicker and didn't gain any weight between 2 and 3 years old. In Dec. 2005 he was still wearin 24 mos. clothes and it was his 3rd birthday. We started the diet in Jan 06 and he's now wearing 4T. It's really amazing.
I tell you all of this because the scopes were not helpful for us. I later found out that testing in kids under 5 is often false negative or inconclusive. The GI agrees that he has celiac disease, but wasn't able to prove it. He had all of the classic symptoms, all of which are gone now.
Try not to stress about the scope. It will be harder on you than it will her. Ask that they give her gas to put her to sleep before doing the IV. The didn't with my son and it was bad. I don't think it hurt too bad, but he had a fit when he saw the needle. My daughter was put to sleep first and it was so much easier.
Make sure the make 8-10 biopsies. Damage can be very spotty, especially in the little ones.
My son was asking for fries as soon as he woke up, so I wouldn't worry too much about food. Just take some of her favorites snacks.
I would encourage you to try the diet even if the biopsy is negative. I wish we would have known to do that the first time around.
I have link in my sig line to a discussion on how to get started if that might be helpful. Good luck and let us know how it goes. Just be prepared for some crying, but know that it's really not a bad procedure.
My daughter's eczema improved going gluten-free, but didn't go away completely. Her other GI symptom and FTT are no longer an issue. My son is doing great too. We did go through testing, which was inconclusive, so we just tried the diet and the results were miraculous.
I also wanted to let you know that a good friend of mine has a daughter with similar eczema. She was miserable. They ended up going to an allergist who found she was allergic to peanuts, milk and eggs. They eliminated those foods and she's now eczema free! You might want to go to an allergist to make sure there aren't other foods involved.
There is a list in my sig line that might have some inof that would help you get started.