16yr Old Diabetic Daughter Just Diagnosed

[Carmen V]

My daughter is a 16 year old Type 1 diabetic, diagnosed back in March 2003. She was just diagnosed 9 days ago with "Celiac antibodies", so we have done our best to put her on a gluten-free diet, even though the doctor said her result of 51 was a "weak positive". Does anyone know if a reading of 51 is considered a true positive celiac test, or is the test result too low? I tried to ask her endocrinologist, but he simply said that we should "try to avoid wheat and/or gluten as much as possible.

My daughter has had some signs of Celiac such as stomach cramps and diarrhea, but more importantly she had some minimal bleeding when using the bathroom yesterday morning. This was after eating fish the evening before that had been breaded, (although she tried to avoid eating any of the the breading). Obviously we have lots to learn here!! Could eating that one piece of fish have caused the bleeding to start that quickly? Any advice would be greatly appreciated!

Also, we though oats were okay to eat, and bought her a box of instant Quaker Oatmeal, along with Quaker Rice Cakes, but now I read somewhere that those might not be safe either. Can some people eat the oats without any problems, and whats up with the Rice Cakes?? Help!!

Thanks,

Carmen V

[psawyer]

Welcome to the board.

What test, specifically, has the 51 result? There are several tests related to celiac, and they have different ranges for positive.

Many celiacs can tolerate oats, but the oats must be absolutely pure. Most oats in North America are contaminated with wheat from a variety of sources. Testing of Quaker's oats have shown some of the highest levels of wheat content of any supplier. So, most of us consider Quaker oats to be off limits. Other non-oat products from Quaker are probably safe.

[home-based-mom]

My daughter is a 16 year old Type 1 diabetic, diagnosed back in March 2003. She was just diagnosed 9 days ago with "Celiac antibodies", so we have done our best to put her on a gluten-free diet, even though the doctor said her result of 51 was a "weak positive". Does anyone know if a reading of 51 is considered a true positive celiac test, or is the test result too low? I tried to ask her endocrinologist, but he simply said that we should "try to avoid wheat and/or gluten as much as possible.

My daughter has had some signs of Celiac such as stomach cramps and diarrhea, but more importantly she had some minimal bleeding when using the bathroom yesterday morning. This was after eating fish the evening before that had been breaded, (although she tried to avoid eating any of the the breading). Obviously we have lots to learn here!! Could eating that one piece of fish have caused the bleeding to start that quickly? Any advice would be greatly appreciated!

Also, we though oats were okay to eat, and bought her a box of instant Quaker Oatmeal, along with Quaker Rice Cakes, but now I read somewhere that those might not be safe either. Can some people eat the oats without any problems, and whats up with the Rice Cakes?? Help!!

Thanks,

Carmen V

Hi Carmen and welcome to the forum! Keep reading - you will learn more than you thought it was possible to know!

Try to get a copy of the test results from the doctor, but you should know that "positive" is "positive." It means your daughter is producing antibodies to gluten and will need to avoid it for life. It is a challenge at first but soon becomes easy at home. School, work, other people's homes and restaurants are much more difficult, as you will see.

Most of us have learned the hard way that removing the breading or other gluten-containing substance does NOT work. We can all relate our own personal experience - I tried to remove pizza topping from the crust.

Think of gluten as dog poop. Anything it touches or that has touched it - directly or indirectly - becomes contaminated. You wouldn't remove the food that had touched dog poop and think the rest was OK to eat and you have to think of things that have touched gluteny stuff the same way. "Gotchas" include mayo and peanut butter jars, butter dishes, toasters, colandars used for regular spaghetti and a bunch of other kitchen problems. Even though the condiments do not originally contain gluten, once someone puts the knife back into the jar the entire contents become cross-contaminated. You soon learn to work around this at home but as I said eating elsewhere will forever be a problem because other people don't "get it."

Some people can eat oats and others cannot. Quaker seems to have a problem with cross contamination during processing. There are other brands such as Lundberg or Bob's Red Mill that do not have that problem. I can eat the instant oatmeal from WalMart but couldn't eat Quaker Rice Cakes.

Once your daughter has stopped eating gluten, any new exposure can trigger symptoms much more intense than what she originally had.

As far as grocery shopping goes, shop the perimeter of the store where the fresh and frozen meats and produce can be found. Avoid the processed foods as much as possible. This way of eating is much healthier and less expensive than the typical American diet.

Don't hesitate to ask questions. There is a lot of knowledge in here and everyone is willing to help and share!

[Carmen V]

Hi Carmen and welcome to the forum! Keep reading - you will learn more than you thought it was possible to know!

Try to get a copy of the test results from the doctor, but you should know that "positive" is "positive." It means your daughter is producing antibodies to gluten and will need to avoid it for life. It is a challenge at first but soon becomes easy at home. School, work, other people's homes and restaurants are much more difficult, as you will see.

Most of us have learned the hard way that removing the breading or other gluten-containing substance does NOT work. We can all relate our own personal experience - I tried to remove pizza topping from the crust.

Think of gluten as dog poop. Anything it touches or that has touched it - directly or indirectly - becomes contaminated. You wouldn't remove the food that had touched dog poop and think the rest was OK to eat and you have to think of things that have touched gluteny stuff the same way. "Gotchas" include mayo and peanut butter jars, butter dishes, toasters, colandars used for regular spaghetti and a bunch of other kitchen problems. Even though the condiments do not originally contain gluten, once someone puts the knife back into the jar the entire contents become cross-contaminated. You soon learn to work around this at home but as I said eating elsewhere will forever be a problem because other people don't "get it."

Some people can eat oats and others cannot. Quaker seems to have a problem with cross contamination during processing. There are other brands such as Lundberg or Bob's Red Mill that do not have that problem. I can eat the instant oatmeal from WalMart but couldn't eat Quaker Rice Cakes.

Once your daughter has stopped eating gluten, any new exposure can trigger symptoms much more intense than what she originally had.

As far as grocery shopping goes, shop the perimeter of the store where the fresh and frozen meats and produce can be found. Avoid the processed foods as much as possible. This way of eating is much healthier and less expensive than the typical American diet.

Don't hesitate to ask questions. There is a lot of knowledge in here and everyone is willing to help and share!

[Carmen V]

Thanks so much for the advice! The dog-poop analogy really made it clear how much we need to watch for cross-contamination. I'm happy to say she is feeling much better today (and no bleeding!) after two days of a gluten-free diet. She has been eating the rice cakes for the past few days, so I'm really hoping that those continue to be okay for her. On Wednesday she starts her junior year of high school, where it's mandatory that they eat in the school cafeteria, so now I'm trying to figure that one out without making her "brown-bag" it every day. Thanks again and have a great day!

[Carmen V]

Welcome to the board.

What test, specifically, has the 51 result? There are several tests related to celiac, and they have different ranges for positive.

Many celiacs can tolerate oats, but the oats must be absolutely pure. Most oats in North America are contaminated with wheat from a variety of sources. Testing of Quaker's oats have shown some of the highest levels of wheat content of any supplier. So, most of us consider Quaker oats to be off limits. Other non-oat products from Quaker are probably safe.

[Carmen V]

Thanks for your advice! I honestly don't know which test result this was - Her endocrinologist just told me that the "normal result" should be around (20), and hers was (51), so I obviously assumed incorrectly that there was only one test. This test was done when she went in for her A1C test, so maybe they only ran the one blood test for antibodies? I am so confused with this - And just when we have the diabetes thing figured out finally! She is supposed to be retested in October when she has another A1C test, but if she isn't eating gluten, then won't that throw off the test results anyway? Thanks for the help!

[ShayFL]

It wont "throw off" the results, it will tell them how well she is sticking to the diet. You want that number to come WAY DOWN.

I am afraid you will likely have to "brown bag" it everyday.

There are many threads in here with parents "trying" to let their children eat at school. It just never works. The risk for CC is too great in that hectic environment.

I understand that teenagers dont want to appear "different" than their peers. But the reality is that she is different. She has 2 diseases that have to be controlled with diet. It is nothing to be ashamed of and she will need to learn to just tell others about it and get on with her life.

Bob's Red Mill makes certified gluten-free oats.

Both Diabetes and Celiac can be controlled well with a natural whole foods diet (meats, veggies, fruits, nuts & seeds and dairy if she tolerates it (yogurt is best)). ALL of the processed foods make control all the harder unfortunately.

She has such an opportunity to learn to eat a very healthy diet and live just as long as anyone without these diseases. But it does take effort and work and some time to get the hang of it.

[CeliacMom2008]

Sorry, but according to Quaker, she should skip the rice cakes. Quaker is pretty up front about their gluten - they come right out and tell you that their products are not safe for Celiacs. It's a shame too because they make the best rice cakes (IMO).

Shay is right, your daughter is going to have to accept that she is different. But you'll be able to help her a lot if you remain positive and compassionate. And we'll all tell you the same thing about brown bagging it - it's just part of the lifestyle.

It's very true that with Celiac you either have it or you don't. If you have it, "trying to avoid wheat as much as possible" isn't really right. To treat Celiac, you must avoid all gluten. "As much as possible" makes it sound like a little isn't a problem. That's just not the case. When a Celiac ingests gluten (from wheat, barley, rye, or contaminated oats) it sets off an autoimmune response that damages the small intestines. The amount needed to start this nasty chain reaction is incredibly small (1/96 of a piece of bread is a common measurement thrown out there to help you visualize how small of an amount we're talking about). So in order for her to be healthy she can't have anything to do with gluten - and yes, that means checking lipstick, toothpaste, lotions, etc. too.

Unlike what I think of as diabetes, Celiac is unforgiving. There's no shot to take when a mistake happens. There's no balance to be kept. You just have to eliminate completely. That said, I really don't know much about diabetes, that's just my perception never having had anyone close to me be a diabetic. I am not in any way saying that diabetes is easier than Celiac. I just didn't want you to take the doctor's advice about avoiding it as much as you could and put it together with diabetes and think she could just cut back on the wheat.

The first month or so is the hardest, but you both can do it. Ask lots of questions. The great thing about this forum is that you don't have to go this alone. Also, see if there is a support group in your area. Your daughter would probably greatly benefit from joining a ROCK group (support group for kids). There's also a forum on here just for teens. She might find that helpful as well.

[psawyer]

I have celiac disease and type 1 diabetes.

If I overindulge in carbohydrates, I can take extra insulin to partially compensate for it. I say partially because the extra calories must still be worked off and insulin alone will not do that.

For now, let the short term spikes in blood sugar be something you don't like, but you live with.

Total avoidance of gluten is mission critical. I mean TOTAL avoidance.

I'm 54 and deal with these facts, but your daughter, at 16, will be in denial about her new diet restrictions. She is still coming to grips with the diabetic diet. With diabetes, occasional cheating won't bring on catastrophic consequences. Ingesting gluten is another matter altogether.

[April in KC]

Hi Carmen, welcome!! Big hugs on the new diagnosis for your daughter. It's a lot to take in...glad you're here doing some reading.

My cousin is a type 1 diabetic who learned that he also has Celiac. He's in his early 20s. In his case, a year later, he says the gluten-free diet has been a huge help for him, especially with controlling his sugars. There is a ton of good scientific research on the connections between Type 1 and Celiac Disease. Type 1's with Celiac who ingest gluten have a harder time controlling their sugars.

Any chance that you or her father have Celiac? I only ask because it would be easier to go gluten free together than to do it solo. Contamination is a big deal... CNN's Heidi Collins has Celiac...she says a crumb makes her as sick as a plate full of pasta. I don't know why, but many Celiacs become much more sensitive to small amounts of gluten within a few weeks of going gluten-free.

This is a disease process that happens on a microscopic level. The immune system is responding to molecules of gluten - it's the same part of the system that fights viruses and bacteria. When you think about how a vaccination works, then you can understand that it takes very little exposure to provoke a response from the immune system. So you need clean metal or glass pans (dedicated cooking utensils are best), a separate toaster that is only used for her stuff, a separate colander, etc. It is difficult to share a kitchen with someone who eats gluten and not get glutened. No sharing the butter dish, or the peanut butter if the knife has gone in twice, etc.

I do not knowingly consume gluten, but I know from very definite symptoms that I get a little bit of gluten in meals out at least once a month. And I mostly eat at home in a completely gluten-free kitchen.

The good news is that there's a world of gluten-free food out there. If it works with her diabetes, take her out to a restaurant with a gluten-free menu...P.F. Chang's or Outback Steakhouse both have them on request.

[April in KC]

One more thing...

When I was new to Celiac, other people kept posting about brands of foods that I did not recognize. At first I thought it was just regional differences. Then I finally made the connection that they were brands available in health food markets. If you haven't done so yet, check out the health food stores and chains in your area. Chance are, one or more of them will have an aisle and a freezer case dedicated to gluten-free foods. Some have gluten free shopping lists you can print out....others have the foods well organized in one section. -

In the Midwest, a lot of Hy-Vee grocery stores carry gluten-free foods.

If you're looking for gluten-free rice cakes - try Lundberg (health food stores). But there are a LOT of great snacks that are gluten-free...so she doesn't have to eat rice cakes forever.

On mainstream stuff...Rice Chex cereal is gluten free. Dora the Explorer cereal is, too...but has added sugar. Hormel has a line of lunch meats called "Natural Choice" that is marked gluten free. Their bacon bits, pepperoni and bacon are gluten free, too.

Sandwich toppings go well on corn tortillas -lettuce wraps work well, too.

[2kids4me]

Welcome - and keep reading this site! Lots of excellent suggestions already.

My son is 14 - diagnosed Type 1 at age 9, and celiac at age 10. Huge difference in blood sugars after going gluten free. The intestine in a celiac who has not gone gluten free (not diagnosed) is inflammed and villi are damaged which leads to erratic absorbtion of carbs.

It WILL get easier - my daughter is almost 16 and is celiac too. Brown bagging is the only way to go to prevent cross contamination and the resulting physical symptoms or erratic blood sugars.

It is overwhelming at first but once you get better at the diet and making homemade pizza crusts or finding a frozen shell that works, finding fun / safe food gets easier.

I make pizza the night before and my son figures out how many slices he needs (carb wise), packs it to school and microwaves it - they both know to put it on paper towel or a paper plate since the school microwaves always have bread crumbs etc in them. Soon after he did that - his classmates were actually jealous that he gets homemade pizza in his lunch and it looks so good.

Corn chips / cheese and salsa with a juicebox and/ or some fruit / veges.

Rice paper sandwiches - now this took some time to master - working with rice paper!

meat roll ups with a fruit choice and or veges with dip

sandwiches (we use the tapioca bread mix by Kinnickinnick)

chicken salad - the way my daughter likes it - she puts it together in a container with the lettuce and sliced / diced chicken and whatever else she wants, puts ranch dressing (gluten free of course) in a separate container, and then mixes it together at lunch, Very few carbs so you would have to add some carb food to meet the needs of her diet/insulin

Have her help you in shopping for lunch food, get her to create a list of favorite food and find gluten-free alternatives. I found some recipes on this site that are fabulous - for cookies, donuts etc. For those days when a treat would be nice

It is a double whammy in the sense that you have to learn all over again - the various foods and carb counts....and Deal with the emotional impact of yet another dietary restriction for her... but depending on her personality - she may see it as a challenge or something to rebel against. Have her involved as much as possible in food decisions and show her that even if a certain item tasted like cardboard or was a disaster in the kitchen - Get messy and make mistakes! Try again, try various products. It will give her a sense of control and power.

and look at the recipe section here and keep reading threads about snack / lunch ideas for school. There have been a several threads in the past.

You are not alone and neither is your daughter.

There will be "oopsies" in the beginning and learning curve - just like it was when she first diagnosed Type 1.

Best of luck..

Keep coming back.