Mizzo
-
Posts
506 -
Joined
-
Last visited
3 Followers
Mizzo's Achievements
-
-
gluten-free since April and..
Took 9+ weeks before stomach ache free completely. Now normal daily stools, no belly pains, and a voracious appetite. I can tell when she gets gluten because:
1.She gets emotional , quick to temper and crying jags that are inconsolable: lasts 1 day
2.Poop gets mushy, sometimes diarrhea and sometimes light green in color: lasts 1-2 days
3.belly aches usually lasting 30+ minutes
She can get any combination of these or all of them. Typically it is cross contamination from an isolated situation, ie :Birthday party, cookout at someone house, play date with snacks etc...
I don't even try to figure out exactly where she got it anymore unless she was nowhere but home (not likely)
I just try to be as cautious as I can.
As you noted everyone is different, good luck!!
-
Mizzo and everyone who wrote me: THANK YOU! Can you let me know which "guide" you are referring to? Need to pick up one for home as well.
The Ultimate Guide to Gluten-Free Living compiled by Celiac Disease Center at Columbia University.
This was recommended by the nutritionist at Children's hospital, the book gets updated and published every year. $20 at Amazon
It has a grocery shopping section listing gluten-free brands by category and fits in my purse.
Maureen
-
If I had to explain it to 2nd graders,which by the way my daughter is going to be in 1 week I would say:
Celiac disease is an Autoimmune disorder : THAT MEANS....
When a person with Celiac eats a food with Wheat, Rye, Barley and "Oats" in it, they have a reaction in their intestines. The body cannot digest Gluten and fights it. This can cause belly pain, feeling tired a lot , loss of weight, a rash, bathroom problems etc.. whatever details you feel comfortable giving.
Show them a straw as an example of the Villi and when Gluten is eaten the "straw" flattens and can't "drink" all the good vitamins in the food they eat.
When the person stops eating Gluten the Villi "straw" grows back up and can "drink" the vitamins again.
Explain how a person with Celiac will never be able to Gluten again, that there is no cure.
Good luck. Make sure you leave it on a very high positive note for your girl.
Maureen
-
Just a comment.
I got my Celiac 101 from Children's hospital as well and we were told that only certain Soy Sauce were gluten-free, we were not told to avoid all of them. The fact that the same hospital told you something different bothers me. I would think Children's hospital of all places should be extremely clear about their nutrition talks.
Thank goodness for this forum!
-
I spoke with a woman last night at a Celiac mtg who said in her intro to Celiac packet (3yrs ago ) It said Distilled vinegar that's in nearly every ketchup and mustard is not gluten-free safe.
I mentioned I have been using Heinz with no problem which has distilled vinegar and is on my safe list. Anyone hear of this or is her info outdated?
PS,
We know Malt vinegar is not safe, this question is just about Distilled vinegar.
-
We use both La Choy soy sauce and San J Tamari with no problems.
There is a Teriyaki sauce from Premier Japan which is gluten-free but we have not tried it.
-
According to my Celiac handbook the following are gluten-free
Bone suckin sauce
Buffalo wild wing sauces (not Asian zing or Teriyaki flavors)
Cattlemans's
Dinosaur barBQ
Kraft:
Bulls-eye
Chick n rib
garlic
Hickory
Original
Sweet & Sour
Thich n Spicy
Lea & Perrins:
Marinade for chicken
Traditional Steak Sauce
Worcestershire
Mr. Spice
I have used Kraft and Bullseye with no gluten side effects.
-
nO FRIDGE or electricity, just a camp stove and coolers, 4 nights 5 days!
hanks,
Gretchen
I just got back from a 5 day campout but I had access to electricity so it was easier.
Day 1 you seem ok for , Day 2 can be sandwiches you premade or PBJ on Udi's bread there for lunch.
Udi's bread stayed good for us in the cooler for our 5 days. so you could do sandwiches many of the days.
Canned tuna, chicken, salmon, crab, whatever can be added to a pasta or rice with a bag of mixed veggies for anytime meal.
Canned gluten-free soups with crackers or corn chips is good
Makes sure you preslice and premarinate all/any meat you bring, cause it just makes it easier. remember Ice only lasts 1 or 2 days in coolers.
However I have heard adding rock salt to the iced coolers will superfreeze your foods for a few days. Try it out before hand just to be sure.
The boxed shelf milk (Parmalat etc..) worked great for us, no worries about spoilage.
Have fun
-
Are you real camping or do you have access to fridge or electricity?
-
Anyone know if Campfire brand marshmallow are gluten free?
-
My 4-almost-5 year old daughter has the following:
Down Syndrome (birth)
Hypoparathyroidism (5/2009)
Addison's Disease (10/2009)
and 2 heart defects (PDA and PFO) (birth)
She has had a constant battle with constipation her entire life. We began seeing a GI last year, who started her on a once-daily
adult dose of Miralax for constipation. Diagnosis was encopresis (enlarged colon due to stool-holding), so he wanted us to induce
diarrhea for 3-6 months in order to give her colon a chance to shrink back down to normal size. We are on our 8th month now.
Even while on Miralax, she still does not have daily BM's. She goes every 3-4 days. When she goes, it's usually 3 or times
(full-to-overflowing Pull-ups every time--she is not toilet-trained yet). So, when she goes, it's a LOT. But the frequency is
still every 3-4 days. We go back to GI in 2 weeks.
We discussed Celiac as a possibility, as it is my understanding that Celiac can cause either diarrhea OR constipation, yes??
He did a blood test and said it was negative for Celiac, but then said "but false negatives are not unheard of."
He mentioned the possibility of doing a biopsy at some point...
She is a great eater--eats anything and everything. We have never had a need to do any dietary changes, so that is not something we have done. (Other than adding the typical "anti-constipation" foods---pears, apple juice, etc. None of which seemed to make ANY difference.)
Advice? Suggestions? Questions I should be asking?
My girl was also being treated for same colon problem with Miralax for off and on over a year, with the occasional flushing with Milk of Magnesia . Finally we went to a GI had the scope and found Celiac.
If your DR will order it it will rule out or confirm many different problems. It's a simple procedure for the kiddo's , much tougher (anxiety) on us.
Good luck
-
Unlike the majority of Celiacs, my girl was not underweight but in the 95th percentile on wt and ht before the diagnosis. which is one of the reasons for it taking so long to get the correct diagnosis.
She has been gluten-free since mid April and suddenly in the last 3 weeks has gained 4 lbs. This may be cause for a happy dance for most parents but I have been watching her diet for over a year now and am worried. She had a yearly checkup in June and lost a BMI point and that was good but now its probably back and up some.
It's summer she is swimming nearly everyday, riding her scooter etc.. Certainly getting more exercise than the previous months . Her diet is not great,but not horrible. She hates most vegetables but I force at least 2 servings a day into her, as well as 2 fruits. she loves her proteins and dairy/cheese. She gets snacks like all kids, and I have been playing with every homemade muffin/cookie recipe to include flax, fiber etc..
Usually she goes 2 hours without a snack and then wham, she wants to eat every 15 minute for like 2-3 hours. Is this normal ? I actually find myself yelling no more eating, take a break.
Sometime I can't seem to fill her up. Anyone else experience this voracious appetite at certain times of the day? It not always the same time of day either.
Does it level off?
Maureen
-
Matt has his endoscopy (with biopsy) and sigmoidoscopy on Aug 9 at 9am. How did you, as a parent, deal with any anxiety before, during, and after? We won't know anything until the 19th, which is when he has his follow-up appointment. Right now I'm full of anxiety; I'm nervous and scared. I know I'll likely not be able to sit still during his procedure. Did any of you get to go back during the procedure, or did you wait in a waiting room. I think this is where most of my anxiety is coming from: I don't know what to expect during the procedure. I don't know what (other than the medical part of the test) will happen.
Any BTDT advice?
The absolute hardest part for me was the time before the scope, so I feel for you. I had to feed gluten filled foods to my most likely celiac disease child and then wait. UGHH!!!!!!!!
It took over a year to get to the test because of non being diagnosed properly, therefore saying to myself its only 1 more week got me thru it.
The test itself was a breeze for her, we the parents suffered more in anxiety than she did in discomfort.
We were with her in the prep room just talking and keeping her calm. We walked her into the procedure and they put the mask on her and went to sleep, we were a wreck, she was fine.
We had to wait in the waiting room about 1 hr, then as soon as she was wheeled into recovery we were called in there before she woke up.
Our girl had a mildly sore throat that day and that was it, she got a popsicle in recovery and was very happy.
BTW: We did not even discuss the procedure with her till the night beforehand.
Good luck, having the test and therefore a conclusive diagnosis was worth it.
-
Honestly, I think it's better to be safe than sorry. Its better to have them line it with fresh foil and use clean tongs than your poor son have stomach troubles while camping out. That doesn't sound like a very fun time to me.
CC is always an issue in a non gluten-free environment.
My Examples:
My girl got cc with tongs at a family BBQ, and that was with CONCERNED family being careful, but oops forgot to use separate tongs and yes an mild stomach ache did occur ( just with tongs.)
I let her play with play dough, not thinking the CC a big deal as she is 7 and doesn't stick her fingers in her mouth. Yeah! right!! next day, stomach cramps and Diarrhea.
My girl ate nuts from a canister that had Sesame sticks in it and again cc'd, a mild stomach ache but still it was not fun for her.
We are at a the point where we can tell being cc'd is a concern and now take even more precautions. I pack all her food, right down to napkins now.
I don't care what others say she gets what I give her and nothing else, unless it's factory packaged then into her hands.
-
Hi,
I just got confirmation through Enterolab that my son is gluten intolerant (not sure if Celiac or not but either way he must be 100% gluten free from now on). He's 6 and is majorly bummed out about the diagnosis. He's actually been really angry since we found out and I can't blame him. I found out a few months ago that I'm Celiac and have found it really hard to adjust my own diet - can't imagine how it will affect a 6 year old.
Anyways, back to my question. I have to start packing lunches next week for his summer camps and I am at a loss. No idea what to feed the poor guy. I eat really simple lunches myself (chicken salad, soup...nothing really great) so I really don't know how to pack a yummy gluten-free lunch for a kid.
I'd really love some ideas from other parents who've faced this problem. Any help would be greatly appreciated.
Thanks
what would you have packed for him if he was not diagnosed? what does he like?
There are hundreds of mainstream substitutes that are gluten free . My celiac disease girl was diagnosed in April and with just one small glitch I made it thru 2weeks of girl scout camps pretty easily.
we can offer sub's if we know what he likes.
-
Emily,
If you explain that you have a celiac disease child to the manager and ask that your order is done and put aside for you 1st thing in the morning after cleaning I bet they will do it. I am finding just how accommodating people will be if asked. If they say no, no loss.
-
Hi.
I couldn't tell at day 5 what was and wasn't causing belly aches . My celiac disease girl still had continuos pains for 2 weeks solid, then it eased up on the length but didn't stop completely until around week 9.
Anyhow an average day would be:
Breakfast: Chex, Trix or Envirokids cereal and milk or pancakes or yogurt with hard boiled eggs. Fruit/yogurt smoothies are good too, or even just dinner leftovers
Lunch: Udi's bread sandwich of PBJ or Oscar Mayer Turkey or Bologna with cheese, or corn tortilla with rice and beans, sliced fruit and carrot sticks or cucumber with dressing, again could be dinner leftovers
Dinner: The easiest meal to make in IMO
A starch of rice, gluten-free pasta, or mashed potato's, sometimes Ore-ida fries
A vegetable of green peas, green beans, cucumber and ranch dressing, broccoli or asparagus this is it for green vegetables for her for now
A protein of BBQ /soy sauce and ginger/ or curry on chicken/pork chops or Turkey meatballs, meatloaf, steak etc....
It will get easier in a couple of weeks.
MAKE A LIST of what you can have:
proteins, vegetables, fruit, starch, dairy if any
list sauces or dressing on the bottom. Remember all fresh herbs are ok as is some dressings, and if not, salt, pepper, garlic and olive oil are ok
mix and match them up to make meals .
Traditional meals don't apply to food allergen people , have pizza for breakfast and scrambled eggs for dinner who cares.
It gets easier, good luck
-
I replaced only fairly scratched teflon pans and all my wooden utensils, kept my plastic and silicone. I also replaced my toaster and my knife block. I kept the knives just replaced the holder.
I wasn't sure if I should replace the colander so I just use one specifically for gluten-free pasta which is pretty much all we have now anyways.
-
My understanding is:
There is no gluten in Oats. Oats are consider cross contaminated because they are grown in the same fields as Wheat , Rye and Barley.
-
Thanks all...I will try and order the Domata online. I contacted King Arthur flour today regarding their new gluten free mix, but they told me there is not a "list" available yet for where it can be bought, at any supermarkets, and to ask my local food store if they'll consider carrying it. Odd. Maybe they're still looking into the demand to see how many order it directly from their factory. In any event: sure appreciate all of the great suggestions.
Actually I asked my local stop and shop to carry some specific items and they ordered some of them and put it in their organic section with most of their other gluten-free foods. Also my local health food store is usually willing to order any product so long as they have a relationship with them already. I still haven't got Namaste flour but I will keep trying, and I will have to submit a new request for the King Arthur flour .
-
You should always read the packaging. However, blend flours and recipe packages typically do add it, but things like Brown rice flour or Tapioca starch or Potato starch etc.. do not.
-
IMO: I use Pamela's pancake and muffin mix and I think it's ok. I have tasted muffins made with Namaste flour and think it's much better. However I cannot find it. If you do I would suggest trying the Namaste first. The baker told me she substituted her reg flour recipe cup per cup with the Namaste. It was a yogurt muffin recipe, and they were 3 days old in a tupperware container that was on the counter and they were really good.
Good luck
-
If it doesn't have to be candy a gluten-free breadstick will work and be edible. Schar makes an Italian breadstick that is thin and tasty.
My daughter is on wk 2 of camp and although I had constant contact in regards to cookout day, dessert time and build your own trail mix event etc... things did not go 100% as planned and my daughter missed out on a few things I had OK'd/or substituted for, before hand. I guess there were erring on the side of caution which I why I did not get mad. Things like this will happen you are just gonna have to roll with it, was our lesson.
good luck
-
It's going to be hard to tell if it's 2yr old behavior, being on vacation behavior ( fun , exercise, overstimulation) or Celiac behavior if he is not showing belly or stool problems. IMO only use paper plates for him and as a cutting board and plate, only use plastic utensils that get thrown away after each use, and ziplock everything with a do not touch taped to it ( buy a lot of these items)
Even the grandparents should know not to feed him. This way you are on total control.
Cutting boards carry a high risk of cross contamination and even a stirring spoon or spatula can be easily grabbed by someone and used for gluten containing foods, then put back down on the counter. The easiest way to handle things is to have your boy be the first to eat at all times that way you handle it and no one else. If he is not ready to eat when the kitchen is free, baggie it till he is.
Good luck , I have a family camping trip coming up and I will be facing the same problems. no matter how hard my family tries at cook outs they Always put something on my girls plate that is cross contaminated, so I have thrown away a meal and started over being the hawk, hovering over my 1 section of aluminum foiled grill, with plastic fork and plate at hand.
FYI,
Aluminum foil can be your best friend it keeps food separate and you can grill ANYTHING in it. I have even done Tatertots, just oil the foil a lot.
Maureen
Breakfast Options
in Parents, Friends and Loved Ones of Celiacs
Posted
What about the Chex gluten-free cereals, or gluten-free oats, Cornbread with jam, Grits with eggs, Canadian bacon or Sausage with fruit, just a few idea's