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
glutenfreex4, The way I understand it is that puberty doesn't have to occur for the growth window to close, but yes ask your doc. You might also ask for a bone-age scan too. It's a 5-second x-ray scan and tells bone-age in years. If his age is higher than the bone age, he likely has time to grow.
I agree with gottaski - you should get levels tested for Vit A, Vit D, B Vit and Iron. Calcium too if possible. Even if he's not deficient, I don't think taking a Carlson's capsule would be harmful. You can look up reputable maximum supplementation levels of specific vitamins via sites like National Institute of Health (US) or Mayo Clinic.
If he's not dairy intolerant, a Boost drink daily is a good idea.
Regarding the recipes, the carrot cake, cornbread and enchiladas aren't really "mine" - I make the Gluten Free Goddess's version found here: http://glutenfreegod...arrot-cake.html And the cornbread is hers too but I make it without the green chilis: http://glutenfreegod...een-chiles.html
Chicken enchilada recepie: http://glutenfreegod...enchiladas.html (Sorry to call them "mine" but she has great recepies that have become family legends. And her dark chocolate brownies are to die for - even for gluten eaters.)
I make chili from an old Betty Crocker cookbook and I'll post that later.
What kind of curry does your family like? Spicy? Authentic? With cream or coconut milk? I have several curry recepies.
Also, I'd like to put in a plug for Stephanie O'Dea's "A year of slow cooking" blog - she cooks only gluten free and these are great family meals. http://crockpot365.b...ili-recipe.html
I read a medical article/study that said that for boys, they don't go into puberty until they reach ~110 pounds. Another study proved that Vitamin A supplementation for boys was as effective as hormone supplementation to reach puberty.
So when he went gluten-free, we had him take Carlson's Cod Liver Oil capsules (lemon flavor and they don't taste like anything at all and no aftertaste) that have lots of Vit A and D and are easily absorbed by damaged intestines. We also had him take a sublingual Vitamin B and a gluten-free multi-vitamin.
We also tried to get him to eat more, which was hard because eating hurt at least until he healed a bit. So whatever he wanted to eat, I'd cook. It took him a while to get used to gluten-free replacements but he liked my home-cooking "tweaked" to be gluten-free, like chili and cornbread, chicken enchiladas, chicken curry over rice, pot roast and mashed potatoes.
Your son could try diary-free for a while and then add it back in to see if it helped being df or not. But it is hard and limits the diet more, so you could also wait and see.
We used Earth Balance for butter substitute and I use it in baking. I'm a butter snob but I even like it in cake frosting and can't tell the difference. He loves my carrot cake recipe.
Let me know if you need recepies or brown-bag lunch ideas.
This does sound rational, if he's on board with staying gluten-free and not cheating.
My son's story- short version.
I was diagnosed when he was 14. He was 100th percentile height and 100th percentile weight until he was 5, then fell to 5th percentile weight, 25th height at age 14. He only gained 4 pounds from age 12 to age 15 but the doc would say "Look he gained weight." And they would look at me (5'3") and say "Well he's just destined to be short." But hubby/dad is 6'1", my dad is 6'4" and son has four uncles and an aunt that are taller than 5'11".
At age 15 he was:
5'3" 96 pounds
Zero testosterone (not in puberty at all)
Bone age 12.3
Negative on celiac panel, diabetes, thyroid etc.
He was totally unhappy that he was short and slim. Dad/hubby vetoed endoscopy after negative blood test so son and I agreed that if his gene test was positive for celiac, he would go gluten-free. It was and he did and he went dairy free too. He didn't notice too much improvement right away but he did say that "I didn't realize that eating wasn't supposed to hurt."
Now at age 19 he is 6'3" and 165 pounds. He TOWERS over his pediatrician that told him he was destined to be short. He only grew about four inches the first year but he was in puberty six months after going gluten-free. Coincidence? We'll never know.
He went to high school and had two friends in his group (he was in a separate gifted program where they had all classes and activities together) who were celiac or gluten-intolerant and another who was also dairy free so it was a supportive environment. His friends were so helpful - they would pick restaurants for prom and homecoming dinners that were gluten-free (Maggiano's, PFChang's). He's now in college and they have gluten-free dining options in the dorms there and you don't need a doctor's note (big public university - University of Washington). He says he's never cheated.
Son will eat at places that would make me sick (for example, he'll eat tacos from Taco del Mar where they steam the corn tortillas in the same place as the wheat) but is pretty strict with himself and will send something back in a restaurant if it's prepared wrong. He knows how to read labels. He stocks his dorm with gluten-free canned chili, hot dogs, hardboiled eggs, pre-cooked rice, gluten-free soup.
He has a microwave and fridge and does just fine.
I've always told him that once he was grown he could do a gluten challenge but he says he's ok with what he knows now. He does get sick if he eats something that he shouldn't, so that is enough proof for him.
So, that's one kid's story. I hope your son grows and gets healthy.
If it were me, I'd transition to one meal for the family, naturally gluten-free as you have too many intolerances to combine gluten-free and picky eaters. Plus, some day you may start getting cross-contaminated from your kids' cereals or from their gluteny hands and kisses.
Gluten free goddess has a good number of food intolerances so check out her site for recipies. She also gives good substitution ideas. http://glutenfreegoddess.blogspot.com/2012/10/gluten-free-pumpkin-donuts.html
When your kids grow out of the "don't mix my food" stage you could look at this gluten-free slow cooker site - she has great family ideas. http://crockpot365.blogspot.com/
Have you had a full eye exam? Some of your symptoms sound like Fuchs Dystrophy, which is a serious eye disease that causes corneal erosion and eventual blindness without treatment. Some opthomologists aren't experienced enough and may miss it. I advise that you don't take chances and have an MD look at your eyes. You should also have the test for Sjogren's and not just have the doc issue opinions without the test. If it is nothing, the prescription Restasis should prevent further injury.
Second, if it is Sjogren's, I've read studies that say daily flax seed oil (or in capsule form - not flax seed meal) can give major relief to some people. It certainly can't hurt as it's a healthy oil.
I think the smoothie would taste good all day - you might have to stir it. You could try it but after 12 hours it might not taste as good. It wouldn't go bad if it was kept in the fridge. I keep mine in an insulated mug with a straw.
And yes, I've added protein powder to smoothies no problem.
Colleen, it looks like lots of people need hugs today. I'm sending you one.
What about smoothies? It sounds like you have a good DH. He could make it and stick it in the fridge and you could sip a bit here and there.
Recipe - 1/2 cup strawberries, 1/2 cup mango, 1/2 banana, 1/2 cup yogurt or almond milk or soy milk or sorbet (any flavor but mango would be good). I use frozen strawberries and mango chunks from Trader Joes. There are a lot of other recepies out there or maybe others could suggest.
You could also add protein powder to almond milk or just with water.
You could also try premade smoothies (Odwalla, Jamba Juice) or yoplait I think has one. Sometimes they are sold in the frozen food section.
Have you tried broth-based soups? Home-made are pretty easy. Boil chicken breast in chicken broth/stock until cooked, remove chicken to cool while adding rice to broth. Shred chicken and add to rice. Yum.
It is possible, as the tumor is sometimes a result of damage to DNA after birth. http://www.cancer.org/Cancer/GastrointestinalCarcinoidTumor/DetailedGuide/gastrointestinal-carcinoid-tumors-risk-factors
Thanks Raven. I know your history too and it helps that others here understand.
I think she and my dad have both had the blood test for celiac and were negative. That's the killer. But my blood was negative (while on gluten but after positive biopsy that found celiac by "accident"), my son's was negative, my brother's was negative. I don't know if we have a type of celiac that doesn't show or don't make enough blood antibodies or what (although I know that my son and I had all the tests, even the ones that show if someone is IgA deficient). Or maybe we're non-celiac gluten-intolerant but I do know that I got the gene from one of them. But unless her doc is going to do an endoscopy, there's a good chance the blood would be negative again.
I guess what I'd love to hear are success stories of people who had it and it went away after going gluten-free without steroids. Apparently it may go away after 2-3 years, but long-term steroid use isn't going to be good for her either.
I also wonder about low-dose methotrexate - maybe that would be a good option too.
I'm going to resurrect this old thread rather than start a new one. I know the OP isn't still around but raven and mushroom are. Hope to get input from anyone who has polymyalgia rheumatica.
My mom was diagnosed with polymyalgia rheumatica this week. She's been in terrible pain for months and is 80yo. I'm interested to know if anyone has had resolution of symptoms of polymyalgia rheumatica after going gluten-free? She has gone on steroids but probably shouldn't be on them for the rest of her life. (She's had regular osteoarthritis for 40+ years too.)
She has one diagnosed celiac kid (me) and one other negative but gluten-sensitive kid (my brother) who had great results on gluten-free diet but she refuses to consider gluten as her problem. She denies it because she's "never" had GI issues ...but forgets that I knew where all the bathrooms were as a kid because she would have "attacks" where she had to find a bathroom immediately! None of what I said has sunk in. Now with this diagnosis today, I hope she will listen. My dad is going to try to get her to try it.
We went to an arthritis seminar last month put on by the Arthritis Foundation. The speaker was Heidi Turner RD from The Seattle Arthritic Clinic http://theseattlearthritisclinic.org/tsac/about/people.shtml and her whole presentation was about the impact of food intolerances on pain and how to figure out if wheat (or dairy, soy, corn, nightshades) are the probelem. But I wasn't able to crack Mom's denial. I told my dad that if mom doesn't want to go gluten-free, she should at least go see Turner for a consult.
Like shadowicewolf, I make chicken soup. I cook chicken pieces in gluten-free chicken broth, then shred it. While I'm shredding the chicken, I add some rice to the broth and perhaps carrots, celery etc. and let the rice cook until ready. Add back the chicken. This is my son's favorite thing to have, but I prefer mashed potatoes for my first meal, then move on to other things. Mashed potatoes are easy and so good on a bad stomach.
As I feel better I crave Mac n cheese, but it's a lot of work to make from scratch if I'm the one who is sick. I like Amy's frozen macncheese, but it's expensive and has a lot of fat, so it's not always good on a sick stomach.
I also keep the Thai Kitchen rice noodle soups on hand at work. Spicy things are ok for me and their Thai Curry soup isn't really spicy, so that's what I have sometimes. If you weren't worried about cost, you could toss the spice packet that comes with it and cook the noodles in chicken broth.
Takala, I'm not going to argue with you but Intern has options and she can make a choice as to how she wants to handle it. An option would be just to order and eat the food without making a big deal out of it being gluten-free. It's what my daughter (who is gluten-free but doesn't need to be) wants me to do when I'm out to dinner with her. Teenagers are like that and Intern's roommate sounds immature like a teenager.
There are some people you can change, some you can't. If she has a lease agreement and is stuck with a roommate, she may have to deal with the roommate, unlike a friend that you could avoid or de-friend.
My son is strongly casein-intolerant (and likely celiac, though undiagnosed) and I was undiagnosed celiac when pregnant. He was always fussy as a baby and never felt "well" as a child, but we didn't isolate his reaction to cow's milk protein until he was 15.
I'm glad you're interested in that type of research - very helpful. I'm trying to get my son (who wants to be an MD) to go into celiac or genetic research.