My Mom Was Just Told She Has Celiac.. I Need All The Info I Can Find

[Katie7249]

HELLO,

My mother who is 71 was just told she has Celiac Disease. I am hoping that any and all can give me as much info as possible. I have read what the internet has for me but I sure would love to hear from folks who have it, been thru it or can guide me thru her diet etc.

She is very upset about this and I have tried to tell her we can fix it thru diet. Please tell me if that is true.. We dont see the gastro guy until next week. So any help would be greatly appreciated.

Thank you kindly..

K

[Mtndog]

Hi katie- I'm sure it won't be an easy change but it will be a healthy one.

OK- so no wheat, rye, barley or oats. If you have access to a Whole Foods, Trader Joe's or a supermarket with an organic/health food selection, there are probably lots of gluten-free options there. Same with health food stores.

The hardest part is cross contamination (CC). I had to get new utensils/pans etc because my old ones had scratches with gluten in it. CC is tricky- can't just pick croutons off a salad or crumbs off the butter.

What does your mom like to eat? All meat, fruits and veggies are in. Rice, potatoes, quinoa (I've really grown to like it) are good. Many people avoid dairy in the beginning until they are healed too.

I'll give you a list of my favorite things to eat (replacing gluten items):

Tinkyada pastas

Gluten Free pantry Truffle Brownie Mix

Al Fresco sausages (chicken sausages that come in garlic, sweet, italian apple etc)

Let us know what else you need to know!!!!!!!!!

Welcome!

[Katie7249]

OH THANK YOU SO MUCH for responding. THANK YOU KINDLY. Well it sure was a shock to mom when I had to tell her. Her dr called me as I am her POA.. Her entire body is covered in these blisters ( SORRY FOR THE GRAPHIC Nature of that ) and blood blister type sores. She itches herself to bleed. FINALLY she is on meds that stop that.

She loves her cheerios in the morning and ham sandwich for lunch and she LOVES her potato chips. She snack's in the day could be a popcorn or goldfish.. And dinner is any pasta or chicken. She doesnt eat steak or fish. She likes ground beef though. SO.. Im sorry for all the gory details. THANK YOU AGAIN for responding to my cry for help!!!!

[Phyllis28]

The local celiac support group is good source of support.

[Darn210]

Has it just been a blood test so far?? If she hasn't seen the GI yet, he may want to do an endoscopy in which case, she should stay on a regular (gluten filled) diet until she's had all her testing completed.

Cheerios are out . . . there is a gluten free version called PerkyO's but we didn't care for them (we not much on regular cheerios either ) and there are many other gluten-free specialty cereals. Mainstream gluten-free cereals are Rice Chex (preferred in this house), fruity pebbles, Dora the Explorer Stars and Tigger & Pooh (kind of like Kix)

Popcorn (in general) is fine. Gold fish crackers are out. My daughter use to like the Blue Diamond nut thin crackers but now prefer the Back to Nature rice crackers. We also make homemade chex mix using Rice Chex, Corn Crunchems (just like corn chex) nuts, glutino pretzels (better than regular pretzels in my opinion) lea&Perrins worcestershire sauce, lawry's season salt.

Lots of chips are fine.

Most ham/lunch meat is fine.

Bread is experimental . . . gonna have to try a few to find one that you like. We like Pamela's wheat free gluten free bread mix. It's a piece of cake to make in a bread machine. Bread is usually better toasted and it also doesn't have near the shelf life (unless it's in the freezer).

We also use Pamela's Pancake/Baking mix . . . makes a good pancake and use the recipe on the side for muffins. I also use it to dredge my chicken in for fried chicken.

Plain meats, Plain veggies, Plain fruits, etc are fine . . . watch out for packaged "flavoured" or marinated stuff . . . safest just to do that at home with guarenteed gluten-free spices/marinades.

I didn't list many brands but I'm gonna provide you with a link. This is a list of companies that do not hide the gluten in their labeling. Companies are only required to call out the top eight allergens. Wheat is one of them, but rye, barley and oats are not. These companies will call out rye, barley and oats so if you just read the label and don't see those items on there, then they are not one of the ingredients. This does not mean that these items are necessarily made in gluten free facilities or on gluten free lines . . . just that all the gluten ingredients are listed (in a recognizable form). Many people are OK with this (my daughter is) . . . some of the more sensitive people need food out of dedicated facilities/lines. No way to tell until you start getting into the diet. (By the way . . . since she LOVES her potato chips . . . many Lays products are OK but on shared lines (like I said, OK for many people) but if it is a problem for your mom, Lays Stax are made on a dedicated line)

Open Original Shared Link

[Lisa]

The local celiac support group is good source of support.

Yes, Katie if you tell us your closet city, I can send you some links to local support organizations.

[curiousgeorge]

It sounds to me like the rash could be dermatitis herpatiformis (sp?) which is the celiac rash. What kind of state is your mother in? You said you are POA, is she living alone or is she being cared for?

I know how rough it is dealing with a sick elderly parent.

[Katie7249]

Thank you for responding.. ( everyone )

We live in the Northwest suburbs of Chicago. My mom had a biopsy on her hand and that is how she was diagnosed. She lives with me actually and now I am very worried about cross contamination. She has had 4 strokes since 2000. She is able to do almost anything. But being 71 she is slowing down quit a bit... Thank you to everyone helping us...

It sounds to me like the rash could be dermatitis herpatiformis (sp?) which is the celiac rash. What kind of state is your mother in? You said you are POA, is she living alone or is she being cared for?

I know how rough it is dealing with a sick elderly parent.

[happygirl]

Hang in there. Its a steep learning curve. But you have great resources here at your fingertips to help your mom. I would definitely recommend seeing a good nutritionist too. You are lucky to be in Chicago - they have one of the best Celiac centers in the country. www.celiacdisease.net. Call and ask for help - they can direct you and provide you with great resources as well.

My best piece of advice is to learn to effectively read food labels. And never assume something is gluten free.

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

Some other good websites for your reading (besides this forum and www.celiac.com)

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

Let us know what we can do to help. Good luck!

[JNBunnie1]

Thank you for responding.. ( everyone )

We live in the Northwest suburbs of Chicago. My mom had a biopsy on her hand and that is how she was diagnosed. She lives with me actually and now I am very worried about cross contamination. She has had 4 strokes since 2000. She is able to do almost anything. But being 71 she is slowing down quit a bit... Thank you to everyone helping us...

The skin biopsy means your mother has Dermatitis Herpetiformis, due to Celiac Disease. It's a definitive diagnosis, and she can go gluten free as soon as possible, there's no need to wait for any other tests. Since you live together, I can tell you that I think it will be easiest for you to make the entire kitchen gluten free. You'll still be able to eat it outside the home, but being the primary caretaker, it will be easiest on you if you don't have to worry about what's safe for your mother. There's also a concern for your mother getting confused about what she can have, if you're not around. We're all confused sometimes about this diet!

[Katie7249]

I know this sounds probably very ignorant but seeing as how I am very new to this and all.. BUT Once I am able to help my mom clear up her Dermatitis due to Celiac is she ever able to NOT be on the Gluten diet? Or is this for life? I have taken measures to clear the kitchen. I went out this am and bought all new silver wear, plates, pots and pans, etc. Anything I thought may have cross contaminated. I threw out all the cutting boards etc. So I hope that is the right thing to do.

The skin biopsy means your mother has Dermatitis Herpetiformis, due to Celiac Disease. It's a definitive diagnosis, and she can go gluten free as soon as possible, there's no need to wait for any other tests. Since you live together, I can tell you that I think it will be easiest for you to make the entire kitchen gluten free. You'll still be able to eat it outside the home, but being the primary caretaker, it will be easiest on you if you don't have to worry about what's safe for your mother. There's also a concern for your mother getting confused about what she can have, if you're not around. We're all confused sometimes about this diet!

[ShayFL]

Celiac is for life. I know it is overwhelming right now, but you will get used to it. Eating gluten-free can be very healthy and you might want to consider it yourself. Have you been tested? Celiac is genetic. Some get the skin issue like your Mom and some get GI. And a smaller percentage just get neurological symptoms.

Think of your own health history: Any migraines, brain fog, fatigue, bone loss, loose stools, constipation, upset tummies, aching bones/joints, menstrual problems. Any and all of these CAN be signs of Celiac.

It is recommended that immediate family members of a confirmed Celiac be tested.

It would be so much easier for you to both be on the diet together. Then a lot less worries with CC.

You didnt have to replace metal items in the kitchen except scratched Teflon. And a new toaster is in order as well. A blender/food processor/mixer can harbor gluten if you ever used it for glutinous foods.

[gfpaperdoll]

Yes, your mom does not need additional testing, she has DH. You might want to be tested though, since it is genetic. Regardless of your tests results, you might want to also be gluten-free with your mom. It does make the shopping & cooking easier. & you will feel better & have more energy on the gluten-free diet, if you eat the healthy way with lots of fresh fruits, veggies, meat, seafood, nuts & seeds. Use the gluten-free goodies like crackers, cake etc sparingly...

be careful, your mom will probably recover & have more energy than you do!!! I am 62 & OMG I just keep getting healthier every year. I was wheat light for 10 years (thought I had an allergy, had never heard of gluten) & now I have been gluten-free for 4 1/2 years. I am also soy free & dairy free. Well there is the occasional chocolate with a little dairy. But at home I occasionally bake with Enjoy Life Chocolate chips. They are dairy free, soy free & gluten free.

Most of my food allergies went away after I went gluten-free. But I still have a few, mostly things that I am not interested in adding back to my diet. Like beef, just not the same as it was 50 years ago. I am also corn syrup free by choice. I do eat some corn meal & tortillas etc. All this to point out that your mom might have additional food allergies that pop up...

I strongly recommend your local support group. & Chicago - lucky you, there is a gluten-free Italian Resturant there, the information just came over the List Serv. Dalucianos, I hope you try it out. It should be totally safe for you as a "beginner" to eat there.

[Katie7249]

WOW, this is pretty overwhelming. But I am so Thankful that I have found this awesome site with wonderful folks on it. I actually did buy a new toaster and blender. ( forget to say that earlier ) and a new coffee pot. I decided the min that I heard mom had this that I too would be on the diet. I have not been tested but I sure will do that. I really have not shown any of the symptoms you listed below but I sure will watch for them.

I figured that seeing as how I was trying to figure out what to replace with the kitchen stuff I would just replace it all. ( I like most daughters I would hope, would do anything for my mom). she is the best and I will make sure to follow any and all advise I get from you guys and drs and nutritionists.

Celiac is for life. I know it is overwhelming right now, but you will get used to it. Eating gluten-free can be very healthy and you might want to consider it yourself. Have you been tested? Celiac is genetic. Some get the skin issue like your Mom and some get GI. And a smaller percentage just get neurological symptoms.

Think of your own health history: Any migraines, brain fog, fatigue, bone loss, loose stools, constipation, upset tummies, aching bones/joints, menstrual problems. Any and all of these CAN be signs of Celiac.

It is recommended that immediate family members of a confirmed Celiac be tested.

It would be so much easier for you to both be on the diet together. Then a lot less worries with CC.

You didnt have to replace metal items in the kitchen except scratched Teflon. And a new toaster is in order as well. A blender/food processor/mixer can harbor gluten if you ever used it for glutinous foods.

[Katie7249]

I would LOVE for my mom to have more energy. However with her strokes in the past I am not sure how much she can get back. But any would be thrilling. Boy you sure have run the gamut on all nutritional changes in your life. I am not sure I could do that. That is just great.

Mom LOVES Italian food so that is where I will take her. And I wont even tell her its Gult free.. Lets see if she can figure it out ya know? LOL

Thank you for your help and advise.. I sure appreciate it.

Yes, your mom does not need additional testing, she has DH. You might want to be tested though, since it is genetic. Regardless of your tests results, you might want to also be gluten-free with your mom. It does make the shopping & cooking easier. & you will feel better & have more energy on the gluten-free diet, if you eat the healthy way with lots of fresh fruits, veggies, meat, seafood, nuts & seeds. Use the gluten-free goodies like crackers, cake etc sparingly...

be careful, your mom will probably recover & have more energy than you do!!! I am 62 & OMG I just keep getting healthier every year. I was wheat light for 10 years (thought I had an allergy, had never heard of gluten) & now I have been gluten-free for 4 1/2 years. I am also soy free & dairy free. Well there is the occasional chocolate with a little dairy. But at home I occasionally bake with Enjoy Life Chocolate chips. They are dairy free, soy free & gluten free.

Most of my food allergies went away after I went gluten-free. But I still have a few, mostly things that I am not interested in adding back to my diet. Like beef, just not the same as it was 50 years ago. I am also corn syrup free by choice. I do eat some corn meal & tortillas etc. All this to point out that your mom might have additional food allergies that pop up...

I strongly recommend your local support group. & Chicago - lucky you, there is a gluten-free Italian Resturant there, the information just came over the List Serv. Dalucianos, I hope you try it out. It should be totally safe for you as a "beginner" to eat there.

[ShayFL]

Now is the time for you to get tested. NOW. Do not go gluten-free until after you get tested or it can invalidate the tests. Make an appt. today for the bloodwork. Make your home gluten-free for Mom but keep eating gluten yourself until you can get tested.

There are MANY symptoms to Celiac. I only listed a tiny few. There is also "silent Celiac" which means damage is being done but the person doesnt realize it until they get dx with T1 diabetes, lymphoma, etc. (diseases associated with Celiac).

So go and get the tests done for yourself NOW to be safe.