T1D, Celiac & Disability


(CHERYLKILPATRICK) #1

Hi Everyone,
Wanted to see if there were any other folks out there who have a pre-teen with T1D, Celiac and a physical disability. My daughter is a brain tumor survivor who suffered a stroke during the surgery to remove the tumor back in 2010. Her recovery was quite remarkable but she was left with physical impairments on her left side (also known as left hemiplegia). She is unable to use her left hand and is blind on her left side. She also went through one year of chemotherapy which could have been the thing that triggered the T1D and Celiac, but we will never know for sure. Would be great to connect with others who have T1D, Celiac as well as any other challenging conditions/disabilities.


(joe) #2

@cherylkilpatrick hello and welcome to T1N. I am sorry to hear about your daughters challenges and recent surgeries - I hope things have been okay for you and the new T1D lifestyle.

There are a lot of us here with T1D, there are a smaller fraction with Celiac and an even smaller fraction of those with all 3. I am sure you can find fellowship but you may find more support if you don’t limit feedback.

I’ve had T1d a long time, diagnosed as a tween. With the right use of insulin I find there aren’t many things I haven’t been able to do - and nothing stopping me from the things I needed to do.

I hope you have a endocrinologist and CDE and all the medical support you need. Please feel free to ask questions or create topics you are interested in. I hope your daughter can also participate here. hope you are also taking care of yourself as the “caretaker” needs help and support as well and often as much as .a person with diabetes. again, welcome to our site!


(CHERYLKILPATRICK) #3

Thanks Joe! I appreciate your feedback and support. My 12 year old daughter was diagnosed with T1D in December of 2013 when she was 7 years old. We are beginning the paperwork to get a Medtronic MiniMed 670G for her. She has been using an Animas Ping since 2014. I am so excited! This new technology will certainly decrease the load for me. I find that the basal rates are so hard to calculate during these tween years. I have learned so much about T1D but still have more to learn. And I am finally learning to care for myself. I actually went away for a 3 day weekend and my husband gladly cared for our daughter. It felt so good to take a break and not have to be on duty for 72 hours! I need to do that more often and recharge my battery. Thanks again for reaching out. I will look forward to using this site more and sharing with a broader vision.


(joe) #4

@cherylkilpatrick
now that is good news. good luck with the 670 if the sensors work for you the general consensus feedback is that it can help with control especially with basal. in my opinion, it’s also good to know her programmed basal requirements in case auto mode is not working.

Joe


(Bill) #5

Hi, Cheryl.

Celiac (or, gluten sensitivity)…ugh! As you are aware by now, there are a “host”(?) of syndromes that can appear with T1D. Gluten sensitivity is one of them. I started a gluten-free diet in about 1992 because of my symptoms. Managing gluten exposure is a lot easier now than it was then; the better grocery stores have shelf tags that identify gluten-free foods. But then there are the over-the-counter medications, like acetaminophen, ibuprofen, vitamin supplements, and on it goes.

I worked as a neuropsychologist for many years. I am very familiar with the consequences of your daughter’s right hemisphere injury. Her left visual field cut is a bit of a bummer - I lost my left eye secondary to a failed vitrectomy in 1978; I have scotomae in my right retina. I don’t have the field cut, but I can attest to the frustrations of visual problems.

I’ll be glad to share my thoughts with you about challenges you and your daughter are having. Not as a practicing neuropsychologist (I’m retired now), but as a person with 60+ years of T1D under his belt, gluten-sensitivity as a challenge, and visual limitations to boot. It’s doable. Not easy, but doable.

Good luck to your daughter, you, and your family!

Bill


(CHERYLKILPATRICK) #6

Hi Bill,

Thank you for your reply. Sounds like you have a lot of experience with T1D and gluten free diets. I would love to hear about how you have learned to balance your T1D with a gluten free diet. As you know, there are certainly more carbohydrates in many gluten free breads/baked goods/tortillas/crackers making it difficult to find a variety of low carb meals. We have found that Glutino white bread is relatively low in carbs but has no nutritional value. I subscribe to Diabetes magazines but they show recipes that are not always gluten free. If you have found any great items at the store that are gluten free and T1D friendly, I would love to hear about them.

Thanks.


(Bill) #7

Cheryl,

Sometime this weekend my wife and I will post a lest of our favorite “gluten free” products and manufacturers. You’re right about crackers, cookies, and bread - some of them carry a huge carb load, greater than their not-gluten-free counterparts. You can add breakfast cereals to that group.

More later.

Bill


(Bill) #8

Cheryl @cherylkilpatrick

Here is the start of the list I said I would post.

Breakfast:

Bob’s Red Mill Gluten Free Oatmeal. There are three types available, Quick Cooking Oats, Rolled Oats, and Steel Cut Oats. These products are great complex carbohydrates. You can flavor them with any number of fresh, frozen, or dried fruits, a touch of maple syrup, a pat of butter, or a tablespoon of peanut butter. Supplement with a protein if you want. Fresh eggs, any of Hormel’s gluten-free bacons, or other gluten-free proteins.

I have almost given up on anything else at breakfast. Gluten-free breakfast cereals (Chex Mix, and others) are just too much of a carb load for me to use on a regular basis.

We use Glutino’s “Multigrain” gluten-free bread to make toast if we are not eating oatmeal for breakfast. The “Multigrain” bread makes excellent toast, whether you choose to eat it dry or with a touch of butter.

Yes, I use butter, but rather sparingly. I gave up on margarine a long time ago. I would rather use a little butter than put up with the potential that there is a gluten-containing food additive in margarine even if it is said to be gluten-free.

Lunch and Supper. There are many, many “raw” foods that can be prepared when time is not an issue. Of the “packaged” foods here are some of what we use.

In addition to Glutino’s “Multigrain” bread we do sometimes use their “White Bread.” But, two slices are all that I can manage at a meal. The “Multigrain” has a smaller carb load, I think (13 grams per slice). As above, it makes great toast.

Udi’s breads are an absolute waste of time (in my opinion). The breads are way too porous and don’t stand up to mayonnaise or much of any other liquid at all.

Speaking of mayonnaise, we use Hellman’s “with Olive Oil Mayonnaise Dressing.” Many other mayonnaise products have additives in them made from wheat. Most mustards are fine, until you get into “fancy” mustards (read the labels).

Hormel packages many gluten-free lunch meats. Most (all?) of their “Natural Choice” line is gluten free. We use it for sandwiches (obviously), but also use it to help stuff baked potatoes, for proteins in salads, and in omelets (sometimes on Saturday mornings). It has been a very safe protein for many years.

Laura Scudder “Organic” peanut butter is our favorite. Both the smooth and chunky are gluten free. You have to stir it when you open the jar (it can separate sitting on the shelf). But it’s the best we have found and it is available in most supermarkets of any size.

My wife and I are pretty busy. If we can’t meet for lunch, and if we want something hot for lunch, we take a frozen entrée with us. The two brands we like the best are Amy’s and evol (I spelled that right). Evol makes a “Fire-Grilled Steak” that is really good and is a nicely balanced meal. It has 40 grams of complex carbohydrates in it, and 18 grams of protein; it stays with me all afternoon. Evol has begun to make many other gluten free frozen entrees that are good.

Amy’s makes a two-pack of Cheese Enchiladas that are very good (amazing for frozen entrees). Amy’s makes many other gluten-free entrees that are good, but avoid the Pad Thai – too sweet and too much carbohydrate.

There are good frozen burritos available in a variety of flavors (chicken, beef, beef and potato, bean and cheese, etc.). The brand we have been buying lately is Glutenfreeda. Cooking them is a “black art,” but once you get the hang of it they are a great “quick lunch” when combined with a fresh apple.

Progresso makes some very good soups that are gluten free and low carbohydrate. Our favorites are Chicken Cheese Enchilada, Chicken and Rice, and Chicken and Wild Rice. But read the label and make sure you are getting the gluten free version. They also make a gluten free Clam Chowder and other flavors. Every once in a while they’ll put out a Cream of Mushroom that is gluten free – haven’t seen that one lately.

The Chicken Cheese Enchilada soup is a great base for making a sauce for homemade enchiladas. We add a can of green chilies to it and simmer it for a while until it thickens. Then we pour it over chicken enchiladas we have “built” ourselves, and bake it all in the oven. Oh boy! But two of those enchiladas is about all I can really handle (carb wise).

The Cream of Mushroom is great for sauces, too, if you can find it. I wish it was available more often.

Speaking of sauces (kinda’) the Pioneer Company (think biscuit mix) makes both a gluten free Cream Gravy Mix and a gluten free Brown Gravy Mix. They are excellent. They are the best items we have bumped into in years.

Judy makes gluten free miniature oatmeal muffins that we call “Judy Bites.” We use them as complex carbohydrate snacks. She is going to write down her recipe and I’ll post it. They can be a lifesaver on “long afternoons.”

I need to stop for now. I’ll add more later.

Bill


(CHERYLKILPATRICK) #9

Thanks so much! That was so kind of you! All that information is very helpful!