learning2cope's Blog

I am surprised! Mom had been not really all that willing to help me go gluten-free. She was saying "you'll be fine" in regards to cross contamination. I had sent her 2 emails to maybe spark her willingness to help out.

Celiac.com Sponsor (A13):
 

Here is what I included in the first email:

 

From https://www.celiac.com/forums/topic/99561-feeling-overwhelmed-and-hopeless/?do=findComment&comment=850524

 

“mushroom” wrote:

A celiac diagnosis in the family can be totally overwhelming at first, I give you that. But at some point you have to stop and take a big breath and say, not that this is not going to work, but "How am I going to make this work?" (I see that Karen has added a response so I will revise a little what I was going to say.

 

The first thing that jumped out of your post is that you have two teenage autistic boys. Gluten is believed to play a large role in autism by many. If your husband tests positive you should definitely test your boys (and your daughter, too), but even if they test negative a gluten free diet would probably be quite beneficial to them too. So instead of isolating your husband, join him. It need not be expensive although it will require a bit more cooking. But since you love to bake, learning gluten free baking should be a breeze and the home-made is better than the bought gluten free because it does not have all lthat junk added to it.

 

It is wrong to think that the gluten free diet involves running out and buying every box marked gluten free on the supermarket shelf. In fact, what you would probably do is avoid almost everything in boxes marked gluten free -- which means avoiding almost all food in boxes. It is much cheaper to buy the whole foods than to pay a processor to process the foods, put them in boxes and label them. To start with the only processed foods I would recommend you purchase is rice (which you undoubtedly already have), Tinkyada pasta, Udi's bread, and a bag of Pamela's baking mix. Armed with these items you can shop the perimeter of the store and buy the fresh foods that are on special, the chicken legs, ears of corn (okay, it's winter now so the produce will be a bit of a problem and I will make the exception of going to the freezer case and buying frozen vegetables -- but you will have to read the labels to make sure they haven't added a sauce with gluten or some such thing). At any rate, if money is tight I am sure you are a canny shopper

 

If you don't have one already, get a big crockpot, ideal for winter meals for a busy mom. Toss everything in in the morning and presto, dinner is ready when you are. Thicken with cornstarch or rice flour for gravy.

 

If you approach it with a can-do attitude, rather than a can't-do, it does become a lot easier. You think about the foods you can have rather than the things you can't, and pretty soon you stop thinking about the things you can't.

Here is what I included in the second email:

 

What does "Gluten-Free" Actually Mean?

Since gluten is found in wheat, rye and barley, it is obvious that you will need to avoid these grains. Less obvious however, are the myriad of products that contain gluten as a hidden ingredient. The Food and Drug Administration (FDA) has not yet regulated the use of "gluten-free" on a food label, but it does require manufacturers to declare wheat if it is used as an ingredient in a product. Unfortunately the regulations do not require companies to disclose ingredients that are made from barley or rye, which unfortunately requires you to learn to read and understand ingredient labels. Many additives, natural or artificial, can contain gluten. Sometimes companies label products as "gluten-free" or the ingredients are naturally gluten-free, but the product may have be contaminated if it was manufactured on shared equipment. You will have to decide if you want to include such products in your diet. It is also important to remember, for reasons just mentioned, that “wheat-free” does not mean “gluten-free.”

 

Batch Testing:

According to current FDA proposals, products testing at less than 20 parts per million (PPM) for gluten will likely be allowed to be labeled "gluten-free," and, according to them, are considered safe for people with gluten-intolerance or celiac disease. There are several organizations that offer gluten-free certification for companies who follow their guidelines and batch test their products. Check out the link below for more information on gluten-free certification and labeling.

• Gluten-Free Food Certification Program by the Gluten Intolerance Group

 

 

Gluten-Free Shopping

Shopping will likely take much longer for you than it used to. Don't rush. It is important to read all ingredients carefully. If you are in a hurry, you run the risk of overlooking a key ingredient that might contain gluten. I find it helpful to plan my meals in advance. There is nothing worse than coming home from work hungry and realizing that you have nothing to eat (and it isn't like you can go to the first drive-thru you find). So planning my meals on the weekend and doing my shopping in advance, cuts my stress level down considerably and keeps me from going hungry. Check your products against your gluten-free guidebooks, and contact the manufacturer if you are unsure about something. The following links will help you take the guess work out of shopping for gluten-free products:

• Safe Gluten-Free Food List (Safe Ingredients)

• Unsafe Gluten-Free Food List (Unsafe Ingredients)

• The Gluten-Free Mall

• Gluten-Free Food & Drug Lists: Downloads/Software Programs

As mentioned, there are also many products that are naturally gluten-free that are not labeled "gluten-free," and there are some very helpful books that can help you find these foods when you are shopping:

• Self Help Books (Gluten-Free & Celiac Disease)

 

 

A Gluten-Free Kitchen

A gluten-free kitchen is very important. If you can have an entirely gluten-free kitchen, that is ideal, but it may not be an option for many households. Therefore it is especially important to keep your house clean and free of gluten contaminates. It is also important to dedicate special kitchen supplies for gluten-free cooking. I bought a new cutting board that is dedicated only to gluten-free cooking. You may also want to have separate kitchen utensils such as sponges, toasters (a dedicated gluten-free toaster is highly recommended), sifters, bread machines, etc. This is especially important if you use utensils that are made of wood, plastic, or other porous materials that could harbor gluten and possibly contaminate your gluten-free food. If possible use an electric dishwasher to clean your dishes.

 

If everyone in your household is going gluten-free it is important to clean out and empty all of the gluten products from your kitchen. If you share a kitchen with gluten eating family members, it is a good idea to store their food products separately from your gluten-free products, and to clean off all surfaces before you prepare your gluten-free food. Dedicating gluten-free cupboards and refrigerator shelves is a great way to start.

 

Here are some important links that will help you cook gluten-free meals with ease:

• Gluten-Free Cooking

• Gluten-Free Recipes

• Gluten-Free Cookbooks

 

Kitchen Checklist - Possible Sources of Contamination:

• Bread-machine

• Toaster

• Sponges & cleaning pads

• All kitchen supplies & utensils

• Colanders

• Cutting boards

• Door handles

• Soaps

For more information on maintaining a safe kitchen environment, click the link below:

• What You Need If You Can't Have A Gluten-Free Kitchen

 

A Gluten-Free Bathroom

Believe it or not, your bathroom is another place where you might be getting sick from gluten contamination, and not even know it. There are many products in your bathroom to watch out for as many body products contain wheat and/or hidden gluten ingredients. Most celiacs can use body products without a negative reaction, though some people experience rashes and other unsavory reactions from gluten body products. However, if you are using face or body products that contain gluten, it is very important not to ingest them. I find it difficult to avoid getting shampoo or makeup near my mouth, so I don't take any chances. I use gluten-free soap, shampoo, conditioner, face-cleaner, toner, make-up, toothpaste; basically nothing goes onto my body that contains gluten. Using gluten-free body products allows me the freedom to worry less about accidental contamination, and gives me more time to enjoy my life. Many gluten-free body products are not labeled gluten-free, so it is important to read ingredient labels carefully and check with the manufacturer if necessary.

• Gluten-Free Personal Care: Gluten-Free Lotions Gluten-Free Soaps

Bathroom Checklist:

• Toothpaste

• Shampoo/conditioner

• Make-up

• Lip-stick, lip-liner, lip-gloss, cosmetics, etc.

• Lotion

• Sunscreen

 

Gluten-Free Medications (Prescriptions and Supplements)

Most people with celiac disease or gluten-intolerance also suffer from malabsorption and sometimes malnutrition. Your doctor may prescribe pain, anti-inflammatory, digestive or other medications or supplements to help assist with your recovery. It is very important to note that some medications and supplements can contain gluten. Do not assume that just because your doctor knows you have celiac disease or gluten intolerance that the medications or supplements they may prescribe for you are gluten-free. Be your own advocate and read the ingredients and contact your pharmacist and/or the manufacturer and find out if your prescriptions, vitamins and supplements are gluten-free.

• Gluten-Free Vitamins & Supplements

• Gluten-Free Medications List

Additional Concerns

Children with Celiac Disease

Raising children with celiac disease or gluten-intolerance is no easy feat. Your kids will have to deal with immense peer pressure and there will be a great deal of temptation for them to eat gluten-containing foods. Talk to the staff at their school and help them to understand your child's special needs. The more support you have, the better off your child will be. There are many support groups that advocate for children with celiac disease, and it is important to get involved and learn everything you can to help support your child.

• Raising our Celiac Kids (R.O.C.K) Support Group

Pets

Your pets present another source of potential contamination, especially if you have pets like mine that love to smother you with unexpected kisses, sometimes on the mouth. What your pet eats can affect you too. Handling your pet's food, cleaning your pet's dishes and having young celiac children in a house where they may eat dog or cat food are all legitimate concerns. I decided to switch my pets to gluten-free pet food. Most pet food is not labeled gluten-free, so it is important to read ingredients carefully. I found grain-free, all natural pet food to be a great alternative to gluten-containing pet foods, that way I don't have to worry about accidental contamination or getting kisses from my pets--and it's healthier for them too! It is also important to check all other pet products that you come into contact with for hidden gluten ingredients, like shampoos and soaps. It is of course always important to talk to your veterinarian before making any dietary changes for your pet.

 

Other Food Sensitivities

Most people who begin a gluten-free diet experience almost immediate relief from their symptoms. However, many people experience gluten-like reactions to other foods, and often suspect that their food was contaminated by gluten. As it turns out, many people who experience such reactions may in fact have additional food sensitivities. Some of the most common food sensitivities include, dairy/casein, soy, corn, sugar, nuts, shell-fish and processed or fatty foods. While many people report that they are able to add these foods back into their diet after they have established a gluten-free diet for many months, and after their intestines have had time to heal, it is up to you and your doctor or nutritionist to determine which foods may be causing you trouble. The 'elimination diet' is often recommended for determining what additional food sensitivities you may have. Ask your doctor if the elimination diet is right for you.

• Elimination Diet

Food Diary

It is important to keep a food diary, especially when first initiating a gluten-free diet. Making notes of the foods you eat and the reactions you have to the foods you eat, and how you feel that day, can give you more insight as to which foods are hurting you and which foods your body can easily digest.

 

Final Thoughts

Be Picky

Having a gluten intolerance means taking pride in your body, but not being too proud to say, "no, thank you." Don't worry about appearing too picky to others, you simply can't take care of yourself and worry what others think of you at the same time. You have the right to eat what you want; if something doesn't look, smell or taste right to you, or if you just don't feel right about eating something, don't eat it! It is better to come across as too finicky, than to spend the night in the bathroom or worse yet, the emergency room. Everyone has a different level of gluten sensitivity and you will have to find out through trial and error what works best for you.

 

Be Prepared

As a former Boy-Scout, my high-school teacher used to always say, "Be prepared". I cannot emphasize enough the importance of this statement. It is important to be prepared and think ahead. Keep gluten-free snacks on hand at all times, because you never know when you are going to get hungry somewhere that doesn't offer gluten-free food. Keep shelf-stable snacks in your car, office, purse, and anywhere you spend time. It is better to have gluten-free snacks on hand, then to get hungry and make a bad decision to eat something you might later regret.

• Gluten-Free Snacks

 

Gluten-Free Quick-Check:

• Read all labels carefully

• Call the manufacturer whenever necessary

• Avoid cross-contamination at all times

• Keep your hands clean

• Check personal-care products for hidden gluten

• Check all vitamins, supplements and RX prescriptions for hidden gluten

• Make sure your pets are gluten-free

• Maintain a food diary

• Get involved-join a support group

• Rule of thumb-if you think it's possibly contaminated, don't take any chances. It's better to go hungry than to suffer later.

• Above all, trust your body

Additional Resources:

• Gluten-Free Forum

• Celiac Disease Support Groups

• Gluten-Free Newsletters & Magazines

 

 

As always, Open Original Shared Link welcomes your comments (see below).

Just copied and pasted from celiac.com

I think those emails helped her to understand this is real and this is a real lifestyle change for me and hopefully them at home. I don't care if they eat glutened foods but I do hope we can keep the kitchen as gluten-free as possible.

Mom bought some good food to try out. We have 2 bread mixes to try and a basic baking flour. I'm not sure if we'll use it very often mainly because it's expensive but also because it may not taste very good.

I just ate a sandwich with gluten-free corn tortillas. It wasn't altogether bad. It was chewier than I expected. After the first 2 bites it was pretty good. It reminded me of yummy mexican food Plus I had pepper jack cheese on it so that was good, too.

Well I'm having intestine issues right now. It's been probably about 1/2 hour since eating that sandwich. Everything was brand new, supposedly gluten-free. My guess is my intestines are not happy right now so everything I eat is causing problems. Plus I was glutened by a prescribed medication today, a few hours ago. I had to take a generic Phenergan and it totally took away the nausea, bloating, intestine burning, etc. I think I took that around 7:30 or 8pm. I can't remember as I didn't write it down.

Well, I had taken my Gabapentin at the same time I took Excedrin for my headache. So I’m not really sure if it was the Gabapentin or the Excedrin that caused the problems. Tomorrow I will take the Gabapentin without any thing else and well after I last ate or took anything. Hopefully I can narrow it down and see which medication caused it.

I did look up both medications but couldn’t find an answer for Excedrin Extra Strength tablets. I went to drugs.com and looked up my specific Gabapentin profile and it doesn’t list any obvious gluten, BUT it does list corn starch and I think I’ve read that corn starch is usually contaminated with gluten if not specifically considered “gluten-free.”

All I know is that reaction I had was BIG. There was no question I was glutened.

I’m feeling less stressed trying to become completely gluten-free. I already checked and my toothpaste is gluten-free. though I am not sure about Listerine yet. I haven’t checked that out - so I haven’t used it.