Pediatric Celiac

As a preventative measure we took Matthew to a pediatric Gastroenterologist this morning. We wanted to determine whether he was a carrier for Celiac. We learned much about the development of the human immune system and history of Celiac. Most importantly we gained a game plan to make future decisions for what is best for Matthew's health.

I went in to the appointment with a set of preconceived idea of what was necessary to diagnose. There is a line of what I am willing to subject our 4 month old son in order to answer that question. The blood test I was hoping for only measures the antibodies if gluten is present in the system. So, unfortunately we still will have to introduce gluten at some point to know. The biopsy is the litmus test for the disease. I am not comfortable subjecting my infant/ toddler to anesthesia or that invasive of a procedure. Should he have positive blood work or present symptoms, that's enough for me to eliminate gluten from his diet. Symptoms in toddlers are varied but typically present as failure to thrive (inability to grow or gain weight), diarrhea, constipation, abdominal pain, irritability and/ or vomiting. Blood work can be done at the well baby checks up for 12, 18 and 24 months of age. He does have a higher risk factor than the usual 1:223 to 1:1000 incidents due to family history. If you're curious, this article had much of the information we discussed at our appointment.

Our current game plan: We will wait until 6 months of age to introduce solids. I will continue to express milk to some degree as long as my supply lasts or 12 months, which ever comes last. As far as when we will introduce gluten in general, I anticipate that occurring after 12 months of age. We will monitor for symptoms and have a Celiac blood panel at the suggested intervals. We'll pray for God to lead us to what is the best decision for Matthew's health and development.

Here Matthew is while we practiced rolling over:

Pizza!!

I posted my May pics below, but this deserves it's own post. Boston's Restaurant is now offering several gluten free varieties of pizza on their menu :-)

They offer it in their individual size pizza . The size great for me as this is all that made it in to the take home box. It was hot, gooey warm cheese and great thin crust :-) They had about 13 different mixes of gf toppings to chose from. I chose the venetian, aka meat lover's.

The pizza can share a little space with this Chicken Alfredo recipe I found since they are both Italian foods. I grew up with a mom who did the kind of spaghetti sauce that had to simmer for two days so these are my comfort foods. My local grocery store now carries the penne pasta and I found the sauce recipe with my magic bullet recipe book that I received for Christmas. My dear sweet husband said it was comparable to his favorite Penne Rustica at Macaroni Grill. Love you sweetheart !!

Gluten Free Demos

I received this from a GF group I belong to and had to pass it on to anyone interested in the area:

Wanted to let you know that Market Street United Foods Grocery in Plano, Tx will be having GLTEN FREE DEMOs this Thursday, 10am - 6 pm throughout the store. Our address is 1929 Preston Rd, Plano, Tx 75093

Celiac + hungry pregnant woman = I'm there :-)

First Mother's Day

I looked back at my entry for this time last year and see differences and similarities with yesterday. In some ways the feelings were still there about our wait. I still honored the precious women in my life whom I love very much and are responsible for who I am. In other ways, this year was surreal. I was so glad to make church on this day for the first time in 3 years. I was so very thankful to be able to stand up when our preacher blessed the mothers. To receive prayer and acknowledgment for the heart I've had for so long is everything I thought it would be.

I was very touched and cried through most of the sermon on Hannah, twice. We went to both services after being asked to update this from a year and a half ago. They replayed just a minute or two of the video. In person we revealed then that the struggle we mentioned was infertility. Of course 90+ women from the church found that out at the retreat a few weeks ago. I'm so very incredibly grateful for the ending to our story. I cried both times listening to the sermon. Billy and our friend "R" did most of the speaking this time. "R" was the friend who came up to him two weeks before we found out we were pregnant to tell us God put it on his heart that we'd be having a child soon. The sermon was done so respectfully and beautifully. The major point was that when women of faith encounter trouble, these women pray and that God blesses these women. I know not every woman receives the same blessing or the desired one. God does bless though. It's really the best sermon I've heard on infertility. A sweet woman from church pulled me aside during greeting time because she had felt the desire to pray over our pregnancy for the last few weeks. I cried again. They passed out a very sweet book at church to the mom's. I felt overwhelmed standing up with all my different other emotions present :

My mom, me, bonus dad, sister and brother. They were teasing me about something so we are all mid laugh.


My bonus mom and all the current grand children.

I just love my sister's kids, so here's a shameless other shot of them:
(Ashley, Kyle, Joan & Mark)

Cards from loved ones.... This first card so perfectly said how I felt. I cried again.

Yeah, cried.....


Thoughtful beautiful gifts, i.e more tears:

Half of a heart that says lil sis. Leah has the big sis half.

Sweet summer maternity blouse:
These willow tree figures are so beautiful.

Thank you Dawn for taking this sweet picture of the givers :-) It was sweet explaining the gift to Rachel.
My most recent food find at the Super W. I didn't even know they made honey nut and definitely not Gluten free! I usually skip the cookie/ cracker/ cereal/ bread aisles unless Billy wants something from there on occasion.


I have been taking tummy pics, I'll post them soon!

Food

I found the best thing at the grocery store today. I don't have to go to the specialty store and spend $3 more for the same amount of cereal. Corn and Rice Chex are now gluten free!!


I'm hungry most of the time lately, so here's a selection of what I have been snacking on:
I'm trying to portion out the empty calories so these are in the cabinet still from Easter:



This is from the Rocky Mountain Chocolate Factory, yummoo! Ate a bit every day for 3 days...


I've tried a couple different combinations for an acceptable trail mix and here's what I've come up with:



Acceptable dry snacks:




Favorite breakfast has been blueberry muffins:


My favorite dinners lately have been tacos and the following:


Last weekend at the retreat I was guilty of some snacking. There was some great kettle corn and peanut m & m's. Most of what's on this snack table I couldn't eat. I do miss my cheeze it's and oreo's. There is no gluten-free substitute!!


Both meals I had there consisted of salad. I also had fruit and cottage cheese :-) So I do get healthy things in!

Food Embargo?

I use my blog as a way to chart gluten incidents. We believe the offending item was consumed during Friday afternoon's lunch. Saturday at lunch time the feeling hit. The best I can describe it is intense cramps, just a bit higher than if it was girl time. My joints began to ache and I fell asleep for the afternoon. So the rest of Saturday was scrapped as well as Sunday morning. About lunch time Sunday, it eased up, leaving me very sore and tired which is starting to ease up as well. I made it slowly and carefully to small group last night.

The culprit to the best of our knowledge was contaminated mashed potatoes. The wondermous new found mashed potatoes with the yummy half and half and cream cheese. It wasn't the new recipe but the mess up of eating Billy's left overs that he used his butter on. We use separate condiment containers due to when Billy (or any other normal person) butters his gluten filled bread and scrapes in there for some more it brings with it crumbs back in to the container. That's all it takes folks.

I was supposed to clean the house, do laundry and help take care of our niece and nephew for my SIL's birthday. None of that occurred on Saturday. It becomes so hard to make plans when I don't know when this will hit as I hate letting people down. As careful as we try to be, this sometimes is frustrating. I don't want to give full reign to my complaints, but suffice it to say there is a small part of me that feels like going on a food embargo. I am tempted to prohibit freight transportation any where near my intestines.

Celiac 101

I have this resource of information about Celiac I share with those new to the condition. I had Billy reread it before sending out an updated version this week for a friend of a friend and he suggested I post it here, so here goes:

I've had Celiac for two years now and I'm happy to help anyone to adjust to this lifestyle change. This information is based on my experience and opinions over that time. Please ask what ever questions you would like, I will help in any way I can. Food is such an every day part of life and such a social point of interaction as well. I know some of it was frustrating in the beginning just trying to order and buy food.

1. What to avoid: No wheat, rye, barley and oats. Oats is a controversial one. You'll find on some websites stating to avoid it and other's say it's fine. I avoid it Oats unless it says Gluten Free on the packaging. Avoid ingredients such as artificial flavors, malt flavoring, modified food starch, as well as cottonseed oil on the package labels. Modified food starch can be corn or wheat based, so if it doesn't specify I pass. Be careful of soups, sauces, dressings and pre-packaged foods. Gluten is a very common thickener, preservative and binder in foods you would not think would have them. The most common foods to avoid are bread, pasta, as well as flour based tortillas, pastries and deserts. Gluten can also be found in personal care products.

2. Grocery shopping: I'll cover both the economic as well as the great treats that are a little more costly. Wal-Mart is getting very good about stating on the back of their products if it is gluten free (gf). I started out with that approach and then learned how to read ingredient labels so it wasn't so overwhelming as to what look out for in regular foods. Food labels do state the 8 most common food allergies on their labels per the law. You can read about it here: http://www.mayoclinic.com/health/food-allergies/AA00057. I carry around a pocket size dictionary guide from the Canadian Celiac Association that tells the 'Acceptability of Foods and Food Ingredients for the Gluten-Free Diet.' In order to still be able to more fully utilize Wal-mart and other more affordable grocery stores, educate yourself on the food labels. You can still buy quite a bit by knowing what to avoid. Shop mainly on the outside of the store at first with the fresh meat and vegetables. Avoid the cracker, cookie and bread aisles, there's nothing there for you. Some items I can still buy at Wal-mart include Cocoa Pebbles, Ranch brand dressing, Dinte Moore beef stew, a few Progresso soups, a few banquet tv dinners, Frito's, cool ranch Doritoes, and Tostito's brand tortilla chips. Several manufacturer's state which products are gluten free on their websites. Bookmark and check regularly to make sure they haven't changed their recipe.

Sprouts has the largest selection of gf specific foods. Pamela's, Glutino, EnviroKidz, Mrs. Leepers, Mi-Del, Bob's Red Mill, Ener-G and Larabar's are some of the most common labels in my pantry. Health Valley and Cherrybrook Kitchen have some very tasty gluten free items available. They taste great too! Wal-mart does not carry these brands, Target sometimes does if you ever grocery shop there, as well as I've noticed the Signature Kroger's have a growing section of gf items. The gf substitutes are usually 2 to 3 times the price compared to their mainstream counterpart. It is more expensive to buy gf, it's a smaller market and for example for every cup of all purpose flour, they have to combine about 3 alternative flours, plus gf binders to achieve a similar taste and texture.

3. Cooking: Easy food I do at least once a month at home is chicken stew. Chicken breasts, carrots, celery with Swanson chicken broth ( the bullion cubes have gluten, so those are a no). In the crock pot with seasonings (most dried ones that come in the racks are fine). Crock-pot, add potatoes the last hour, hearty, healthy and cheap. We eat on it for days. You can change normal flour recipes fairly easy by substituting Pamela's Baking Mix. I do much more cooking from home now since I can control what goes in my food and that gives me a huge peace of mind. I make lasagna and just getting rice or corn noodles, everything else is fine. Check your sauce, traditional or Meat Ragu is acceptable. I make my own bread from scratch after trying several both frozen and shelf labels that I only ate due to how much money I had spent to buy them. I have a high sensitivity level to any contamination so my husband (who isn't a celiac) and I use separate condiment containers unless it's a squeeze bottle. This prevents bread crumbs in the butter, peanut butter or jelly containers. When I cook something that contains gluten I do so after I have cooked mine to avoid contamination through the pans.

4. Eating out: A restaurant I can't say enough good things about and is comparable to a Bennigan's price wise is called Delicious 'N Fit or a.k.a Laura's Bistro in Plano. There website is http://www.delicious-n-fit.com/. They cater to people with food intolerance and allergies. You can eat chicken fried steak, gravy, a hamburger, pizza and it's all gf. They also have a small gf store and bakery. Pei wei, PF Changs, Outback Steakhouse, Maggiano's, Carrabba's, Carino's and Chili's all have gluten free menus. Macaroni Grill was very helpful in ordering when I went there for my husband and Chipotle is really easy as long as you skip the flour tortilla. When we started eating out at other places, we'd go earlier than their rush time so we could ask all the questions we wanted until I was comfortable and felt safe to eat there. At nice places, I've had the kitchen manager or chef come out and talk to me if they didn't have a separate menu. Also on the eating out, super simple place is McDonald's for convenience. I know I wasn't a fan as an adult, but I can go in and order a burger without a bun, and their fries are gf.Some fast food places fry breaded items in their oil thus contaminating the fries cooked in the oil. Chik-fil-a you can get a grilled chicken sandwich with no bun and their fries are safe too. Most soup and salad bars or sub shops you can at least have a salad with no croûtons, check the dressings and a baked potatoes.

5. Health Information:. Most people are lactose intolerant for the first six months to a year. This is due to the damage done to the small intestines from the gluten which is where lactose is absorbed. I did lactose free milk and eased up on the cheese and other dairy products until that was healed. I have to say this because I wish someone had told me in the beginning, rice is a very common substitution in this gf life. Between that particular additional starch and not getting in wheat which is high in fiber, it can lead to issues. I sprinkle Benefiber brand fiber on my food either while it's cooking or afterwards about once a day. This diet change is very hard on your system. Adjusting to less fiber can be quite painful if you don't do something. The benefiber is odorless, tasteless and no texture. I also started taking acidophilus once a day as well as the Dan Active probiotics drinks. My doctor agreed they were both a good idea as they help with digestive health. Down the road your doctor will will want to check your vitamin levels to see what your body is absorbing as malnutrition is a common side effect of Celiac.

6. Resources: There is a Dallas chapter of the GIG (Gluten Intolerance Group) that meets downtown Dallas. I went once just for the Introduction session to learn more, too far for me to drive on a regular basis. I am on their mailing list which has been beneficial. Their emails are pretty frequent. Celiac.com had some good information and food you can order online. I keep meaning to sign up for the gf cooking classes at Market Street, I've heard good things about them. I read quite a few gluten free blogs for recipes and information. You can google gluten free blog and find several. I use a cookbook called 'Incredible Edible Gluten-Free Food for Kids'. I chose this book because it contains the most common every day foods

Probiotics

After reading a wonderful article by my sweet friend Dawn on intestinal immune solutions, tonight I began taking some things that I hope will help my body in repairing the damage due to the celiac. I had an especially bad episode Friday night after having what I believed were safe tacos for lunch Thursday afternoon (it takes that long for the food to go through the stomach digestion process , it's the small intestines that suffer the damage) so the timing couldn't have been better. For any other sufferers or those interested I am drinking a Dan Active once a day, the immunity style that includes l casei immunitas also a decent protein and calcium source. Along with that I'm adding to my vitamin regiment an acidophilus, which promotes intestinal health. I thought it would be good to note what I'm doing here to chart hopeful progress/ improvement. Thank you for the insight Dawn!!!

Doritos

I was having a snack attack yesterday and went pantry diving. I eyed my husband's unopened bag of cool ranch Doritos and decided to do a rare web hunt search. Snack food has never tasted so good after going almost two years with out it. The regular Doritos have gluten in them so I have stayed away from all flavors. It's the little things in life that can bring a smile. :D Thank you, Frito Lay for posting gluten information on your web site!

A Good Friday

Today, Billy and I slept in and when I awoke he greeted me with breakfast in bed. We went to the police station where they filled out our background check forms (no, we do not have criminal records) and then off to the post office to certify mail a decent size package. From the flow chart they gave us, sounds like the next step is to check on the references we provided for them (all five of them not including the letter our sweet pastor sent out last week on our behalf). Then they perform a home study to see how we live, where the baby would go, etc. I've had a couple of really great conversations with some women about adoption who had alot to share and I'm so blessed they reached out to me. Thank you Jenna, Michelle and Krista! From what I'm hearing from this point it could take anywhere from 12-18 months (estimate) for a baby to be placed with us.

For now, we will work on putting our house on the market. It doesn't feel quite so overwhelming now we've been spending time in the Psalms, it's just helped so much. We went to Home Depot this afternoon to buy a faucet to go with the new sink we bought last week. (We actually got it from Billy's brother who got the wrong color, we loved it, so bought it off him, saved him from having to return it) We have several other fix it projects, toe kick for Billy to replace, headboard for me to finish, etc, etc. Then we are going to ask at least one more realtor what they think about our home. We'll need help finding a new one too. Pretty exciting, we moved around a bit as kids, so one last move and then Billy won't be able to peel me out of this next one.

The day ended with a wonderful dinner that's probably the best one I've made in the two years I've been adjusting to the Celiac. Billy made the awesome gravy and the red sauce is a Homemade Gourmet packet for Buffalo Chicken Wings, Billy thoroughly enjoyed! We baked the chicken with some of my Pamela's Mix and a bit of olive oil, they came out so pretty! I cheated on the biscuits, it's a gluten free mix, Sarah still makes the best ones from scratch :-)





I'm officially tired, night!

Day 7- Coronado Island & Day 8- Home

Our last full day in San Diego had me waking up to a now familiar feeling. My joints ached and the more I moved around the more I hurt and became lethargic. The random notation yesterday of picking up the wrong vinegar had implications. Some vinegars have malt which is a form of gluten in them. That is the only thing I ate differently (sometimes it's hard to pinpoint the culprit after the fact). The sun was shining, it was our last day and I had heard great things about the Hotel del Coronado so I sucked it up the best I could and went. I would walk about 10 feet and have to rest and catch my breathe. It really leaves me in a foggy head feeling for about 24 hours.

We took a ferry over, so I could sit and that helped:


Picked up a souvenir or two from Coronado Island, the shopping side:



Downtown San Diego from the Ferry and then from the Island:




We took the ferry back over to drive over the bridge:




We saw the Hotel Del Coronado:



We left the hotel early afternoon and then I got to sleep :-)

We left for the airport early the next morning, here's the view of San Diego from the airplane:




Goodbye San Diegeans and thank you for a wonderful week!

Magazine Vote

For those who don't know, I have a condition called celiac. It's an auto immune reaction to gluten which is a protein found in wheat, rye, barley and often oats. My immune system attacks my intestines causing flu like symptons for me. (Symptons vary per person). Martha Stewart is having a contest for the next big idea. A magazine for food allergies, sensitivities and intolerances is on the top of her list. Please click on the link below and vote for Alexis to make this happen!

http://blogs1.marthastewart.com/martha/

This would be a big resource for people like me, which is 1 in every 133 people.

Thanks!!

Food

Work has gotten really busy lately. They (always love when people say they in regard to work, makes it easier to blame stuff on people, hehe) have been making alot of organization changes. I'm praying it's just the transition and things will level out after a bit. They are both great guys to work for. The increased workload is definitely effecting my eating. The hypoglycemia means I have to eat about every 3 hours and the gluten & lactose intolerances gives me a much smaller list to chose from to obtain the 27-35 carbs I need at every sitting. I got off work Monday fuzzy headed... stomach starts getting pretty upset when I don't keep my normal schedule. Everyone is pretty nice, some of the lower level management is bit higher maintenance but they are nice just the same.....