Support Group

I went to my first Celiac Disease support group meeting. I was thankful that my mom was in town to watch the kids and my husband could go with me.

I wasn't sure what to expect except that it was scheduled for a hour and a half and most people would be bringing a gluten free dish to try. I didn't bring anything as it was my first meeting and I really didn't have anything to make.

I signed in and met a couple of people there that had some info. They also had a table with some gluten free cookbooks to leaf through. I found this all to be helpful. I wasn't expecting there to be a speaker, but there was. She talked almost the whole time with pauses for questions. She talked about a paleolithic diet. One modeled after the early hunter-gatherers. She wasn't suggesting replacing the gluten filled foods with the gluten free ones. She talked about a complete change in diet. One that includes meats, fish, fruits, nuts and vegetables. Beans, grains and potatoes were not allowed. Dairy from cows was also on the no eat list. I wasn't sure what to make of her speech, but I could see that she was passionate about it and she was feeling good. She has made a business from her discovery, and I think she helps people change the way they live. I have decided to seek her help and will be awaiting her call this week.

I have been discouraged lately with my diet as I have not seen immediate results. Yes, I've lost some weight and had a brief few days of energy, but now I'm lethargic and depressed again. I have also had my few days of stomach pains like I did before my diagnosis. I do admit that the pain didn't seem quite as severe, but still there none the less. I am planning on writing an entry explaining my history in the near future.

I am hoping to be able to continue to go to this support group in the future as they have many resources. They all are in the same boat as me and have been there longer than me. I am hopeful to find answers to my questions and lead a long and healthy life from here on out.

Replacing

I have been reading that I shouldn't be removing foods but replacing them. In the beginning it was about getting it out. I am still in the beginning stages, but I am moving on to the replacing stage as well.

Last night I had a corn based spaghetti that I admit was pretty good. I hardly noticed a difference especially since it had red sauce all over it. This morning I tried the hot cereal blend with applesauce. I was leery of this as it just reminded me of chicken feed, but after cooking and adding the applesauce, it tasted a lot like the oatmeal that I usually make.

I am very excited to find gluten free alternatives to my wheat filled counterparts. I do wish they didn't cost so much and am still looking to make some of my own breads and things, but that will come a little later.

Lunch Out-Wendy's

I went out to lunch for the first time since my diagnosis today with my best friend. She suggested just running to McDonald's, but I was leery of what to order there. I've heard mixed reviews on their fries and didn't really know what to order there. I had just read that Wendy's, however, has a bowl of chili that is gluten free.

We packed up the kids and headed to Wendy's. I bought the kids their usual chicken nuggets, cheese burger and fries while I got the chili. After I divided up the food I kept thinking how I had gluten all over my hands. I wiped them on a paper towel, but honestly don't think that really got it all off. Luckily, my lunch was to be eaten with a spoon. I also had a coke.

After lunch my stomach started hurting, but I really don't know if it was the gluten on my hands that got into my system, the full stomach or maybe even the carbonation from the coke that set it off. I went home and looked up gluten in coca-cola and found that the maker states that in the U.S., it is gluten free. I guess I'll be on the look out and try to see how it works out for me next time.

First Trip to the Health Food Store

I'm trying to stock my pantry with items and foods that are safe for me to eat. I am also trying to take the approach that cookies weren't good for me in my gluten eating days, so maybe I should try to cut them out completely.

I have been trying to find recipes and products that sound good and don't take a lot of money to buy or make. I would like to buy ingredients that are in a lot of different recipes and will be a staple for me. I found a website that lists some items to have handy in my gluten free pantry. The item that caught my attention was nutty flax. It is supposed to be like the cereal Grape Nuts. You can eat it alone with milk or mix it with yogurt. So, today I set out for the health food store to try to find it.

In my first trip to Hy-Vee grocery store, I was shocked at the cost of all this gluten free stuff. An 8 oz box of spaghetti was over $3 and a bag (48 oz.) of all purpose gluten free flour was over $10. Thankfully, at the local health food store, I found the same products somewhat cheaper. They also had a wider selection that included pre-made frozen foods. The items were still expensive compared to the gluten filled ones, but I decided to give a few products a try.

I bought a box of spaghetti (still 8 oz.) for less than $3 and a bag of "mighty tasty hot cereal" that looks more like chicken feed. I am excited to try them both and have decided that if the cereal doesn't taste too good I'll just add some applesauce. Unfortunately, the nutty flax was out of stock, but they told me it would be in on Thursday. I guess I'll just have to visit this new-to-me store again and maybe find something else to try.

I REALLY Need to Do All of This?

I have been reading that book "The G Free Diet", and today I was really shocked at what lengths I am supposed to keep the gluten away from my food. I am supposed to have separate butter and spreads that may be double dipped into, thus leaving crumbs of gluten bread. I should also get some new stirring spoons, colander, and baking sheets for my gluten free foods.

I flipped ahead and read that I am also supposed to make sure my lipstick/chapstick is gluten free as well as my hairspray and maybe even my body lotion and shampoo! I guess I understand the lipstick thing since I could lick my lips and ingest gluten, but I don't get the lotion and stuff. I guess I don't feel that my Celiac Disease is as sensitive as Elisabeth's. I wish there was a test to tell me how sensitive I was. Going to these extremes seems silly to me and to the people I have told.

She also told stories of testing her disease by eating gluten and seeing how she reacted. I have felt this way too, but I know it is damaging to my body and don't really want to take the risk. I am just in limbo right now trying to figure this out. I am looking forward to the day that this is old nature and "no big deal".

First Grocery Store Visit

Yesterday was the real first time at the grocery store. Yeah, I did go and find cereal, but I didn't really have anything for lunch, dinner or snacks.

I read a couple of recipes on the back of the rice box that I thought my family would like. So, I decided to pick up the items to make them. I read labels hoping I knew what I was looking for and secretly hoped everything I wanted would just say "gluten free". I'm not sure everything I got was OK for me to eat, but I tried hard. I stupidly thought french fries and salsa were fine since they were just made out of vegetables, but I found out I was wrong. Both were processed in areas that contain wheat.

I am excited to try these new recipes for my family. They are somewhat picky eaters, but I make a point for us all to sit down to dinner together. I don't want to be the one that has to have something different, especially at dinner.

Fueling the Body

I have really been learning that food is a fuel for the body. I think growing up, food is what makes the hunger go away. I never really learned about it as a fuel. I learned about the food groups and balanced meals. I knew what wasn't really good for you as in candy and such. But I never really thought of it as a fuel. Yes, I had heard of it described that way, but it never clicked in my brain.

As I have started my gluten free diet journey, I have been trying to initially cut out what I knew contained gluten and just fill my belly with food that was healthy. I know I have not consumed enough calories, but I have tried to keep the gluten out. In doing this, I think I have been starving myself somewhat. I have felt hungry at bedtime, and breakfast and lunch don't fill me up for long. By the time dinner rolls around, I am feeling faint, lethargic and somewhat tingly in my extremities. Thankfully, chicken and beef are gluten free and I have been thinking of ways to make them tasty without gluten-filled seasonings or sauces. Then I have some energy, but am definitely ready for bed. I am hoping that this fatigue is going to go away soon and think some of it may be related to the stress I have been feeling over this issue.

Well, I had a lot of hope going into my doctor's appointment today. Unfortunately, I think it was a waste of my time and money. Really, do I need to go to an office, with my kids, just to be told what the GI nurse told me over the phone?

I asked him if he knew about a support group closer to home, and he didn't. I asked him if he knew what I should do about testing my kids, and he said I should only worry about it if they had symptoms (this seems to contradict what I've been reading). He told me I would be an expert on this disease in a short time. I also couldn't believe he didn't have any hand-outs for me or even a list of resources to look into. I told him I had heard the leader of the support group near me was a lab tech in his office-this was news to him!

I left crying at my frustration again. My kids were great (well, not in the office); they asked if I was alright and gave me hugs!

I decided to check out a local grocery store I knew had information on the support group and sold gluten free items. I really don't know how I'm going to afford this, but I don't have the option not to. Even if I make my own pasta and breads, I have to buy the special flour. A 2 1/2 pound bag was over $10 and and 8 oz. box of pasta was over $3! I am going to look into some recipes and see what I need to have in my pantry.

Cereal is Found!

Joy. Excitement. Full. A few words to describe my feeling right now.

Last night I received a phone call from my area Celiac support group leader. What a relief to find her! She has been living gluten free for 30 years and knows what I am going through. It was great to hear all that she had to say.

She gave me some web sites to look into and is going to send me a packet of information. But right now I am most pleased that I am able to purchase regular General Mills Corn and Rice Chex! They also have some with flavors and all are Gluten Free!!!

I went out this morning (even before I took a shower) and went to the grocery store. I bought all the kinds I could have that looked good to me. I think I told you how much I like my cereal. I have just felt like I have been starving myself the last couple of days. It feels so good to get a good breakfast to start my day. I also think this is the most positive I have felt in a while.

Later today, I have another doctor's appointment. I am looking forward to this (even though I have to tote my kids with me) and getting some more information. I especially want to focus on where I go from here and what to do about testing my kids.

Crying. I've been doing a lot of crying lately. Most of it is out of frustration, but a little is feeling sorry for myself. I feel like I'm going at this alone and it's a harder journey than I thought it was going to be.

Last night I went to bed feeling starved. I know I probably didn't eat very well yesterday, but I was just trying to eat what I thought I could. I made tacos for dinner. I read all the labels, but honestly, I'm not sure what could be hidden that I don't know about. I think I was safe, but I'm really not sure. I did eat a lot since I didn't eat much else for lunch and breakfast. Unfortunately, I think the rice crispies I ate wasn't safe since I later learned that malt flavoring contains gluten and it was in the cereal.

Today, I only had some yogurt and juice for breakfast. I took my kids to the zoo and packed a lunch, but I only had some cheese, chips (they may have had something I can't have) and grapes. I'm not sure yet what we are going to have for dinner. Probably left over tacos for me.

The crying for me today started when I returned from the zoo. I had a message from the pediatrician's office. When I returned the call the nurse said I could have my kids tested but she wasn't sure if my insurance would cover it. I would need to contact my company and ask. I called the insurance company and explained what I was looking for and she said she needed a letter explaining why they would need this test. OK, so I called back the pediatrician and explained what I needed. She said since there is no history with the kids, I would need to have my Dr. explain it to the insurance company. Anyway, I just became so frustrated by the whole thing that I cried, again.

I just want to get healthy and want to make sure my kids are healthy. I know the insurance just wants to make sure I'm not making a false claim, but I feel like a circus act, jumping through all the hoops.

On the bright side, I have a meeting with my family doctor tomorrow to discuss my results and my GI doctor sent some information in the mail that I just received. Also, the book I have been looking for is at Target and my husband is going to pick it up for me on his way home from work.

Frustration.

I think this a feeling I'm going to be having a lot in the future.

My husband let me know that I was going to have to call the health insurance company to see about getting with a dietitian. The email he forwarded on to me from his work listed covered diseases such as diabetes, coronary heart disease, severe obstructive pulmonary disease. Celiac disease was not covered. I have to get my doctor to write a letter of predetermination to see if I can qualify for the service.

I was hoping this would be an easy transition, but I think I was wrong. I have really been thinking and reading about what all is involved in being gluten free and it is like a mountain in front of me. But I am ready for the climb and know I will be so much better when I reach the summit.

Hard day #1 for me so far. I wasn't able to eat breakfast with the kids and now think I ate a cereal that wasn't safe for my disease. Initially, this is going to be harder than I thought. Lunch wasn't much easier. We eat a lot of sandwiches here and for now they too are out. So it was a hot dog with no bun, yogurt, and celery with peanut butter. Not much of a lunch and to be honest, not sure it was "safe" either.

I have been a little frustrated trying to figure this out. So far I have been on my own. I am trying to find a support group in my area, but ended up calling a number I found on the web that was a lady that is no longer involved with the group. She raised a child with celiac's.

Next, I'm going to call the insurance company to see if I qualify for a session with a dietitian. I'm also still waiting on the pediatrician's office to call me back on getting my kids tested.

I really wish the library had more books, so I wouldn't have to be put on a waiting list for everything I want to read. I have been given some suggestions on what to get, but it is so overwhelming. Hopefully, I can find just one great book and feel like I've learned something.

I had some trouble falling asleep last night. I lay in bed realizing what foods I was now not going to be able to eat. Most of it was food I get when I dine out: fried anything, Italian is one of my favorites and the breads you get at the restaurants, donuts. I love cereal and may have 2 bowls a day since I sometimes have it as a snack.

I love pasta and breads. I know there is a way to make these things, but for now I am going to think about how this is going to be a healthier way of living. At the same time, I know that grains are a big part of the food pyramid and I need to find a substitute to maintain health.

I have been relieved to find many resources on the Internet and a Facebook friend has come forward to tell me that she, too, has Celiac's. I have a lot of learning to do and look forward to finding the answers.

Today I found out that I have Celiac Disease.

I have a lot to learn about this and how it is going to change my life and those that are close to me. I am definitely ready for this journey as I am assured that it will help me feel better and be healthier for the rest of my life.