Diagnosis and Testing

I, (Michelle) went to meet my GI on Friday for a consult. We needed to discuss what steps I would be taking in determining whether I have Celiac's or not. After having to switch my primary care physician because he was dragging his feet with setting up some simple blood work, and meeting my new doctor, and having her send me to the GI to get evaluated for said blood work...let's just say I'm questioning my faith in how much these guys know about the disease.

The GI didn't understand why my general physician wouldn't just order up the blood work, while the general physician was leary about ordering up lab work that she wasn't sure of. Why can't these guys get on the same page. If it's easy enough for me to research and find out all of this info. why aren't they getting it??

So, anyway, my GI decided to start with the antibody test and go from there. Again it gets a little tricky...he hasn't diagnosed a lot of patients with Celiac's because he figures the general physicians are seeing it more. Plus, once your diagnosed he doesn't feel that it's a GI problem anymore since it's just diet controlled. Hun?? Why won't anyone take responsibility for diagnosing and treating this easily controlled disease?? Maybe it's because they just don't know enough yet, maybe it's because once there's a diagnosis they can't prescribe a pill to cure you?? Who knows.

Needless to say I'm very frustrated. Plus, he told me that if my blood work comes back positive for Celiac's he wants to do an endoscopy to confirm the results...okay??? However, if it comes back negative then he has complete faith in the test and we don't need to do anything else. ??????? Is anyone else wondering what he means by this?? So, he doesn't have faith in the test if it's positive only negative. Funny thing, I've read in several articles that the blood work is never a definitive diagnosis and there have been plenty of people who have false lab results both ways.

I meet him again next Thursday to get my results. Depending on where it goes, I may be going for another opinion. From what I understand, having chatted with several diagnosed Celiac's, it sometimes takes several trips to the doctor until you find one who really knows what he's doing.

Pray that our doctors are one of those.

Trader Joe's

We went there on Friday the 17th.

Nice store a BIG selection of foods for people with Celiac's Disease. We found a bunch of stuff including bottled green tea for Michelle and my new favorite grapefruit soda (go figure).

Anyway highly recommed it, even though it's a bit crunchy, that is a fact I have come to accept seeing as we have to shop at these stores.

Ethan seems to be doing better as well, he is eating more which makes up happy.

The transition to gluten free seems to have been pretty smooth actually, with the one draw back of a higher grocery bill, but on the flip side we will all be eating better! Organic food when we can, and the less gluten in our diet seems to be better for all of us. So far so good.

later
.mike

The Difference

Well, it's been 2 weeks, 2 days since Ethan has gone gluten free. Not without it's mistakes...thanks a lot McDonald's!!! (for those of you who aren't aware, their french fries as of Monday of last week were considered by most to be gluten free, until Wednesday when McDonalds released a statement saying their fries do include wheat and milk!!)

So, after his gluten fries on Monday, he had some issues on Tuesday and Wednesday that we didn't realize were due to the fries...until we looked back.

However, on Friday for the very first time I was able to sit with him to do an art project. For those of you who know Ethan...he just doesn't sit still. Most of the time we just wrote it off as toddler behavior, but then I noticed that some of his little friends, at the same age were able to sit and focus for longer periods of time...not my guy. Well, it's changing. We sat down together and actually painted a foam airplane! That's right folks, I said paint. Plus, while it was drying, he helped me make some delicious gluten free choc. truffle brownies. He actually wanted to sit there and help. He broke some eggs, mixed the batter, helped to poor etc. I've never been able to get him to do these things before. It's very exciting.

Now, beleive me, he is still very much an excitable, powerful, independant toddler. But, it's so nice to see him doing some of the same things his little friends can do, and enjoy it.

It's amazing to us, what a difference it has made just changing his diet. Although he hasn't gained much weight yet, he's stablilzed at 24.5 lbs and not losing anymore. It's hard to believe that more general pedi. practitioners aren't catching this sooner. It would save a lot of parents and thier children days of wondering why their children won't eat, or act the way they do. I guess we can't write it all off as toddler behavior. Goes to show that today, as parents, we need to be more proactive in our children's health.

-michelle

Endoscopy Part 3

I met with my doctor today and finally got the referral to see a Gastroenterologist! My doc said that because Ethan is positive that the GI may just skip all of the blood work and go right to the Endoscopy. . .which is fine with me. That's a few less sticks in the arm and a definitive diagnosis much sooner. The blood tests are only good if your looking for the disease and don't have any confirmed diagnosis' in the family. It's all so confusing. One doctor will tell you one thing and the next will completely change it. They need to get a consensus and agree on one way and be done with it already! :)

-michelle

Hannaford's Living Well Tours

WOW!
It was awesome. Marilyn Mills is a R.D. that works at the Elliot and is available for tours at the Hannaford on John Devine every Thursday. She did a superb job. Again, she was able to confirm that what we were already buying was great and then showed us a few other ways to help complete Ethan's diet. It was a real eye-opener in reference to Ethan's diet, but just diet in general. She was able to help us figure out how to read the labels a little better, and tell us the things we really should be concerned about vs. what's really okay. I highly recommend her to anybody who obviously has diet restrictions, but also to anyone who wants to really know how to eat better, what's worth the money, and how to read all of those confusing labels.

transition to gluten free

The transition seems to be going well.

Ethan is sitting here in my office at work watching a John Deere video (go figure) and he has eaten Pirate Booty, Veggie Booty and is now devouring his tings. No complaints.

He also saw a cake in our kitchen (dad needed to get his morning coffee fix - joshua likes to keep us up at night) and asked if he could have a piece and I told him that it contains gluten and finished the sentence "and gluten makes me feel icky". Seems to be fine with it.

We are going to Trades Joes in Tyngsboro this afternoon, hopefully find so more for him to eat.

later
.mike

endoscopy part 2

Well I just talked to my GI doctor and seeing as Ethan has celiacs and I have had all of the blood work done, which has come back negative, I need to get an edoscopy as well.

I am still waiting for the date.

At least this will settle the question once and for all.

I'll let you know the result.

later
.mike

Nutritionists vs. Registered Dietician's

For those of you who don't know, there is a big difference between the two. Fortunately we had the latter one today and she was very nice. I asked her what the difference was and she told me that anyone can call themselves a nutritionist, but to be a R.D. you need a bachelor's degree, internship and have to take a state test. I guess it's not to easy to break into the field.

Anyhow, after meeting with our R.D. today Mike and I have come to the conclusion that so far we're doing alright. Mike said that she seemed surprised at how much we already know. Having said that, we certainly don't mean to toot our own horns, but to thank all of the friends and family who have so generously lent us their advice, suggestions, and general info. We felt pretty prepared going into the diagnosis thanks to everyone, and are now convinced that so far we have a pretty good grasp on where we are going.

Most of what she told us I already had photocopied and placed into my trusty binder that I now carry with me...everywhere. It was nice to have everything reiterated. It felt good to know that we weren't going overboard on how to treat this disease. Sometimes I've felt like I'm being to anal, (and for those of you who know me...well you know me) in making sure that we don't have cross-contamination, as well as being picky about the ingredient list and whether or not a product truly is gluten free. However, having several issues with foods herself, she reassured me that what I am doing is absolutely the right way. In the beginning she recommends that you completely go gluten free, no ifs ands or buts. She has a son too, and told me that knowing what she knows now about how foods are processed and changed, and reprocessed and improved, that when it comes to your kids, you can't be too anal. Phew!

On Thursday I will be meeting up with another R.D. who works through Hannaford. She does tours of the store for anyone with any kind of medical condition, even if your just interested in eating better. From what I understand they will be expanding their Natural Foods section due to the amount of products that are being purchased and suggested for future consumption.

We are truly blessed that Ethan's diagnosis was now for several reasons. The first being that the damage done is nothing compared to those of us who have gone 30+ years without a diagnosis. The second is that due to the medical and general public becoming more aware of this condition, the amount of info, foods, support and education is growing in leaps and bounds. Ethan is fortunate that in the future he won't have to learn a healthy lifestyle. He will already be living it through his diet.

Happy Valentine's Day!
-michelle

Pizza Sadness

Well, we've attempted gluten free pizza twice now.

The first time was with a ready made rice crust that had absolutely no taste and felt like dirt in your mouth only drier, (if you can imagine a desert!) The second time was this evening with something called Polenta. It's basically precooked corn meal. The recipe called for the polenta, crushed tomatoes, spinach, and cheese. Sounds okay right??...not quite. First of all, I followed the recipe exactly and it came out quite dry and crumbly, not exactly bubbly and brown as the recipe said it would after only 20 minutes in the oven. Second I had to cook it for twice as long as the recipe called for because it was way to thick for the pie pan it recommends you place it in. Needless to say, the presentation of said pizza was much better than the taste...ick!

However, I'm not going to give up on the polenta. I've since found several recipes that look more promising. Besides pizza is just too important as a childhood staple to give up on so easily. I will find a simple, easy, inexpensive solution to a yummy, cheesy, tasty pizza. It was one of my son's favorite meals to devour, and I want him to be able to still devour it to his heart, (and digestive tracts) content!

It's back to the cutting board...

2nd Banana

Well it seems that Ethan pulled a fast one on Michelle.

When I get ready to go to work in the morning Michelle and Joshua are usually still asleep and I like to let them sleep as long as possible, seeing as we do not get a full nights sleep. Anyway after getting ready Ethan is usually up, so to let Michelle and Joshua get some rest I take Ethan downstairs and give him some Gorilla Munch or whatever for a snack until Michelle can give him breakfast.

Well this morning it was a banana. So I gave him one put on his John Deere video part 2. He asks for them by number now. We have part 1, 2 and 3 and he knows which one he wants. Anyway he is all set and I head to work.

I get a call from Michelle telling me he ate a bowl of cereal and is now eating a banana. I talked to Ethan on speaker phone and asked him if he finished the banana I gave him. At which Michelle said "You already had a banana?" and he runs off laughing "yeah!"

So make that a bowl of cereal and 2 bananas! I guess his appetite is comming back!

later
.mike

Eating or not

Seems that my wife will post new info about the boy before telling me - go figure. Thanks.

Anyway my 2 cents, last night at dinner he did not really want to eat, getting me a bit frustrated, come to find out he grazed all afternoon so no big deal he got food. It just seems tough to figure out if it is normal 3 year old "no no no" or if he does not feel good. Just something we will have to wade through in the comming months. But we have seen him eat more which makes both of us feel loads better.


later
.mike

TV and Snacks

In the beginning, when Mike and I talked about TV and our children, we had decided to limit it to 1-2 hours a day. That worked for awhile...until Joshua came. It seems that sometimes the only way to keep an active toddler such as my son, quiet and occupied is to let him watch the big box in our house. In my defense he usually watches PBS Kids or one of his many John Deere, Veggie Tales, Baby Einstein, or selected Disney videos.

Well, thanks to that big box, I was able to get my son to eat not one but two cereal bowls full of Fruit Bits, Tings, Veggie Booty, and Animal Cookies...all gluten free. Now, these are the same snacks he constantly says no to when directly asked if he'd like them as a snack. This time I didn't ask or offer anything, just placed them on a TV tray in front of him as he watched Sesame Street. For once the zoned out behavior of a toddler in front of the stupid box has worked in the favor of the parent...HE ATE IT ALL!!

Hopefully, a few more times of that and these snacks will become a more regular staple that he may even ask for (ha ha ha, silly mommy) on his own! Time and persistance will tell!
-michelle

Success...well kinda!

It's amazing how excited the parents of a toddler can get when they see their child trying something new...like eating!:) We have a winner...Annie's Gluten Free Rice Pasta and Cheddar (aka: macaroni and cheese) was a big hit. I don't remember the last time my little guy ate that much of his mac and cheese. And then he tried a new kind of bar. It's an apple pie bar that has everything good in it, raisins, dates, apples etc. and he not only tried it but inhaled it and then asked for another one. At $2 a pop, I'm glad that he likes it, but phew it's a pricey snack!!

We've noticed his appetite change a little bit today. He's been grazing most of the day, and he actually ate some Veggie Booty and his Tings. Hopefully he'll continue to get hungrier and a little more daring so that he'll start eating some of these new foods.

We'll see how dinner goes tonight...

Relief...Fear

Well, my husband tells me that this will be a good way for us to jot our thoughts down as we progress through our day to day routines. We have some friends who do a blog for their daughter who has Williams Syndrome, and have found it's a great way to communicate what's happening with their family to everyone they've come in contact with; both family and friends.

As most of you know Ethan our 3 yr.old little boy, was diagnosed on Friday Feb. 3rd with Celiac Sprue Disease, also known as Celiac's Disease. It's becoming more commonly diagnosed because the docs are becoming more aware of how it can present itself in their patients. It's occurence as of now is 1 in every 133 persons in the US. Many people have it and aren't even aware as they can be asymptomatic for a long time. But the damage is still being done to their bodies.

We are VERY fortunate that Ethan was diagnosed now at only 3 yrs. old. The damage done to his intestines is reversible, and he won't have any long lasting symptoms once his diet is completely changed. However, left untreated many irreversible symptoms could have occured ruining his digestive system.

We thank God that a close friend of ours didn't give up on us when trying to suggest the possiblity of him having Celiac's. Without her persisitance I wouldn't have called the pediatrician to set up the tests. We haven't told Cheryl this yet, but we consider her friendship a blessing. She has been dealing with Celiac's for quite some time now, and thanks to all of the information she has given us for the past several months we were prepared to deal with the news of his diagnosis more so than most. In fact the GI doc was more surprised that we took the diagnosis all in stride!

We have set up an appointment to meet with a nutrionist on Feb. 14...Happy Valentine's Day!! At least the gluten-free dark choc. we've tried is VERY tasty...and I would know as I am a chocoholic. In the meantime, research on line, books we've already purchased and the info that Cheryl has already given us is proving to be educational as well as overwhelming. You know the more you learn the more anxious you can become, and as the mom of a 3-yr old, you always worry about how your child is when they are out of your sight. Well, now I get to add one more worry to that list...whether or not he'll get any gluten in his system.

Not only do we need to educate ourselves to help prevent any contamination with gluten in his food, but we also have to educate those who will be in contact with him; both relatives and friends, so they can understand how to feed him, as well as how important it is that he not come into contact with anyone else's snacks. Easier said than done as anyone with a toddler knows. They eat stuf off the floor whether it's food or not...yuck!!

So, we will try to keep this blog updated as often as the infant allows me computer time! :) In the meantime for any of you who would like to learn more please check out the website www.celiac.org for more info.

-Michelle

First Post

Well here it is. Our first post as the name implies.

This is our story of how we found out our son has Celiacs disease and the day to day thoughts, challenges and triumps we encounter.

Although we have just found for sure that Ethan has Celiacs, we were prepares for it and have started making the transition from the moment we arrived home with the prognosis.

There will be more later as Michelle and I put our thoughts down.

.mike