Coeliac Center

I know, some of you may think I misspelled Celiac, but in actuality that is the correct spelling. It was us silly Americans who can't stand too many vowels together who decided to drop the "o" and spell it Celiac. Either way, it still the same disease. And come to find out it's been around since the first century!!!

We went to an inaugural meeting down at Newton-Wellesley Hospital on Tuesday night. We were invited because we are one of many parents with children who have recently been diagnosed with Celiac Disease from that practice. MassGeneral Hospital for Children wants to establish a Celiac Center that will meet 3-4 times a year with one or two bigger Greater Boston gatherings. They would like to establish a way for everyone to not only be involved in the latest information, testing, and foods available, but also give us a way to connect with other families who may be struggling in similar areas with their children.

The meeting had a great turnout, standing room only if you were late, and they also provided plenty of gluten-free foods to try and enjoy. It was a wonderful way for us to try some new foods, without having to spend the money and find out we don't like it. They even gave away samples of Pediasure, Boost, cookies, crackers, fruit snacks, etc. to anyone who wanted them.

The testing on this disease seems to be changing so quickly its tough to keep up with. For having it be one of the oldest diseases they certainly don't know a lot about it. In fact it wasn't until World War II when they really started identifying it as a problem. Prego brain here and I don't remember all of the who's and what's of the history books, (not my strong subject in school) but basically during the war, one of the countries over in Europe had been completely cut off from any wheat containing products. In that time, despite some of the hunger, many people started to feel better as they were living on meat, potatoes, and vegies. When the war ended and the supply started coming back in, many of those same people became sick again.

It is still difficult for the medical community to agree on the best way of testing individuals for this disease. We've found even in this short time that most of the medical community still don't even know what Celiac Disease is, never mind know how to test for it. Even the speaker at the meeting we attended agreed that most of us in that room knew more than half the doctors out there. Why? Well, when something affects your child's life the way this disease or any disease for that matter does, wouldn't you research and try to learn all you could about it for your child's sake??? Even the dieticians in the room, said that after the first meeting with parents, generally the parents come back to the next meeting knowing more about the diet than the dietician did. One of them even suggested that maybe they should try the diet for 6 months and see how difficult it is.

We look forward to many more of these meetings, and look forward to a time when all of the research and awareness pays off so that others may be diagnosed and treated before its too late.

For more information and/or a place to make a donation you can visit www.silly-yak.com . We ordered some bracelets and a t-shirt for Ethan because really he is our little Silly Yak!!

Evaluation

Well I took Ethan to his Easter Seals sensory input evaluation. I say I here because Michelle fell down the stairs at home last week and seemed to have pulled somthing in her shoulder, she did not sleep all weekend and the doctor wanted to see her at the same time Ethan's appointment was. Sooo I took Ethan alone. As every mother knows a father bringing a child to something that requires answers of daily routine can be quite...interesting.

So we met Jessica, who by the way is excellent. Ethan was a little hesitant at first but he soon warmed up to her. She had him sit and play with a big ol rubbermaid bucket of beans and he loved that. Then it was on to puzzles and writing. Which he did fine. She would like to see him hold a pen/pencil correctly though. After that we went into the big room which had all sorts of fun things to play with. There was a ball pit, which he could not get enough of, the other toys that he loved was the zip line. I would place him on the line and push him he would hang there until he was over the ball pit, then he would drop. He LOVED it, we must have done that 10 times, at least. Then there was the scooter and ramp which he loved as well. He had a blast.

Jessica put him through a set of tasks and tests to see where he was developmentally. Seems that the little guy is doing ok. She seems to think that he needs a bit of work but nothing serious and nothing long term. Which made us feel better. She will come up with a report in a few weeks and a plan as well. So we shall see.

If you see Michelle please be nice, the meds are making her quite groggy.

Later
.mike

Peaceful

I found this picture in a moment of quiet time that I had to myself. (Ethan upstairs "napping" and Joshua in the other room yelling at his toys in frustration because they, not he, keep moving in the other direction!)

It's amazing how much my big guy has changed in these past few months. With everything he's been through, he's still my little guy. He tells me he "loves me soooo much" and always wants to give me big hugs and kisses with his little pursed sticky-outy lips. When I go in at night to say a little prayer over his head, I whisper "Good-night, I love you, Sweet Dreams, God Bless...and usually he is murmuring each and every word right back at me in his sleep. Sometimes I even get a little hug or a pat with another "I love you soooo much mommy."

It helps to reflect on those times, because during the day my little angel and I butt heads constantly. He can be extremely defiant, stubborn, demanding, and strong willed. All qualities I know will be wonderful in the future if we can just give him the right guidance. Usually by the end of the day, my guidance ends in a "one more time from you and you will go to your room without any toys!"

No matter how our day goes, it's amazing to me that he is able to let it all go at the end of the day and give all he has to give in love to his mommy. It goes to show that as always we have so much to learn from our children. At the end of the day, we still love each other, we still hug and kiss, we say our prayers, God Blesses and Good Nights, and talk about a whole new day to start in the morning. I just love my children.

Looks like it's me too!!

For those of you who have been following the blog, you may remember that I mentioned I was going to have some blood work done for the pregnancy and was going to ask about having the DNA test done to check if I have the gene common in most Celiac patients.

It is called the Human Leuokocyte Antigen test and they are looking for two possible haplotypes...DQ2 and DQ8. Those two are the most common genes found in all known Celiac cases. Ethan was tested and he has DQ5 and DQ8 and Joshua was tested and has DQ6 and DQ7. So, knowing that I can't have the scope and knowing that from the research I've done, if you have the gene then at some point you will develop the disease I figured I would at least check to see if I have the gene because my anitbody test had come back negative.

Well, folks consider me now gluten free! I was positive for DQ8. I have to meet with my primary care doctor at the end of the month to discuss the results, but my history with them tells me they will just say that without an endoscopy thay can't confirm or deny Celiac Disease. A couple of their nurses didn't even know what the disease was when I called about it, so I'm not going to put much faith in their knowledge. It's unfortunate when we can find all of this reasearch on line and even read about it in magazines, and hear about on the nightly news, yet the medical field still seems to be in the dark.

For me, I have been so sick with this preganancy so far, and am now on anit-nausea medication because of it. I wasn't really surprised to find that I have the gene, and I wouldn't be surprised if I have the antibody test redone to see it spiked now.

Some of you may wonder why I would want to just go gluten free without a "confirmed" diagnosis. But if you think about it, you can relate it to diabetes. If it runs in your family and you know your chances are pretty good once you hit 40 that you will be diagnosed, wouldn't you try to exercise and watch your diet to prevent this disease?? It's the same thing with Celiac Disease. If you know you run the risk of the damage beginning at some point in your intestines, why wait for the symptoms when going gluten free will not only prevent it from happening at all, but is just a healthier diet to begin with??

Besides, with my son and my husband both gluten free, it's just plain easier at meal time. We will be having this baby's DNA tested ASAP, to find out if it is predisposed to this as well.

I urge and encourage any of you who may have experienced any kind of irritable bowel, problems digesting certain foods, if your overweight and can't seem to lose the weight, underweight and can't seem to gain, or have a litany of other health problems already, get the blood test done. Other than the needle stick, it's pretty easy to do, and worth so much in the end as it is an easy solution in comparison to what the future may hold with meds. and hospital visits.

You can check out the link to the right for more info on the testing or you can leave a comment with contact info, and I'd be happy to send the info your way.

Busy, Busy, Dreadfully Busy...

For those of you who know an old Veggie Tales tune...

Anyway, we have been terribly busy. Our house is officially on the market, and we've been officially diagnosed as insane!! :) Oh my goodness! Some of our friends who have successfully made it through this craziness weren't kidding when they told us it was hard to keep a house clean with children running around. But we figured, hey, why not make it a little harder by adding a few more cherries (pits included) t the pie!

First cherry pit, I'm pregnant, and for those of you who have been in this condition at any point in time but more or less in the heat of the summer months for your first trimester, you know what I'm talking about. Nausea combined with a serious lack of energy or motivation can make it tough to care for my other two children never mind keeping the house in tip top shape in case someone wants to see it.

Second cherry pit, although we are done now, for about a week I had to take stool samples on both of my children. Ethan had 14 samples, and Joshua had 9 samples. They had a 4 hour doctors appt. last Thursday where they were tested for cystic fibrosis, both tested negative, as well as a whole lot of other possiblities. They had blood work, and the doctor who by the way I absolutely love, recommended the stool samples for both boys because she wants to rule out some other possible GI complications. For example: yeast, parasites, or any other inability to digest nutrition properly. Now for those of you who've been following this, you may be wondering why BOTH boys are being tested. Well, although Joshua doesn't have the gene for Celiac Disease, it's possible that he has his own problems with growth that could be related to hypothyroid, or the human growth hormone. He hasn't grown in lenght since he was 6 mos. old, and he's now just about 11 mos. old. So, for those of you keeping track, I have one child Ethan who "grows" in height but not in weight, and my other child Joshua who "grows" in weight but not in height. I put grows in "" because they are still only in the 3%-10% range for their height/weight growth.

I have never been so obsessed with food and the various calorie combinations in my life. All the little games I have to play to get them to consume as many calories as possible, has burnt me out. Not to mention that with my food aversions right now, it's no easy task to make something look yummy when I just want to vomit all over the floor! At least I have a friend who I can talk to who has been going through something similar with her daughter, so she has been able to give me suggestions based on what has worked for her...lifesaver!!! (you know who you are)

So, if my posts get farther apart, it's just because we have been busy. And amongst all of that busyness we hope to enjoy some sort of family time here and there! I am just about 9 weeks, so hopefully only a few more weeks of this ick feeling. Then I'll have a little more energy. (You'd think I'd learn by this time around!)