No Longer Gluten-free

When The Mayor had a birthday back in June, I allowed him and the Princess to go off of their gluten free diets.  We to this occasionally to see what happens.  Since we don't have a diagnosis of genetic celiac disease, the hope has always been that they would grow out of it.  I was allergic to wheat as a kid, but I started being able to tolerate it about the time I started kindergarten.  So, we had reason to hope that things would go the same way for him, and then, both of them. 


But the age of 5 came and went with no change in The Mayor.  Last spring when we tried it, he said that he felt fine, but I could tell that he was bloated, his eyes looked puffy, and, well, his bathroom habits changed.  If this seems like too much information, I'm sorry, but I am writing it to help others who might be struggling with the same thing.  It started to look like he was not going to be OK, so back on the diet they went.  it was even more obvious with The Princess, who wasn't using the bathroom alone yet.

Back to this year.  A few weeks after they went on a regular  (but vegetarian), diet, The Princess was obviously uncomfortable again so we took away her gluten.  I reported all this to the NP we see for their physicals and told her that I was ready to pursue testing with an endoscopy of necessary to find out for sure that they were, or were not, going to be gluten free forever.  As it turns out, you have to see a pediatric GI specialist to get an endoscopy, and they don't have those at our local hospitals, so I took them to Dr. Betzhold.  The office was kind enough to get them back to back starter appointments.

They ran bloodwork on The Mayor that day, because he had been eating a normal diet.  The plan was that if it showed any immune response to that diet, the decision might be made to do the endoscopy.  If he had a very strong reaction, an endoscopy wouldn't be necessary, and if he had no reaction, he would be cleared.  No endoscopy, no celiac, no diet.  to be specific, this bloodwork was for immunology, not genetic evidence.  he had genetic workup done when he was about 4 years old, but it showed he carried one gene and not the other, which is inconclusive.  That was why I thought we needed an endoscopy for a definitive diagnosis. 
We don't need one though, because they called a week after the initial appointment to say that his labs showed no response to the gluten.  He feels fine, so he is fine!  We can chalk up his earlier problems to am immature digestive tract.  They want to do labs again in six months to confirm.

The Princess couldn't be tested that day because she had been on a gluten-free diet.   Dr. Betzhold advised her to eat a (gluten) cookie a day for six weeks, and then come back for a blood test, rather than eat a full regular diet and feel very sick.  She has been very careful to make sure she gets her cookie every day!  Unfortunately, I can tell she's been eating cookies because she clearly doesn't feel well.  I don't know if her current spate of the crankies is related to it, but the um...other evidence, is present.  She'll get her bloodwork in late September.

I'm glad to have one less child on a special diet.  There are a great many gluten-free products on the market, and they taste pretty good, a huge improvement over the late 1970's options according to my mother.   I remember crumbly rice flour cakes laced with coconut to moisten them.  I'm still not a fan of coconut...  But these miracle foods are expensive, and most vegetarian meat substitutes contain gluten, which limits the options.  And boy can that boy put it away!  So, I'm happy for him and for me!  For a long time we had this issue on our prayer cards, so I want to thank everyone who was faithful in praying for The Mayor's tummy to heal!  Please, keep it up for the Princess!

Actual Surgery- Mandibular Cyst

The Girl had her surgery two weeks ago.  It took three days before she was willing to let me take her picture with chipmunk cheek, which formed the next morning.  She also got a nice purpley-green bruise, which has just about faded away now.

The surgery was very quick and uneventful.  We left the house at 5:31 a.m. (yipes!) had a tough snowy drive down there, and were on our way home by 8:15.  I was able to stay long enough to see them put the laughing gas mask on her (think big blue clown nose with tubes) and the cannula in her arm, and then I had to leave.  I don't think the procedure took more than 20 minutes, though.  When I came back in, they had moved her to a curtained recovery chair. She was seeing double, as they had said she would, and was pretty panicky.  She just kept asking over and over again whether it was over already, and had they put the stitches in, and were they going to do anything else, and were the stitches already in, and was there anything else, and how was it over so fast...I had to try hard not to laugh.  She also had a gob of gauze in her mouth and didn't know it, making her really hard to understand.  When I finally convinced her to stop talking to me and rest, she went back to sleep for 15 minutes.When she awoke again, I knew she felt better because her eyes were clear.
Then the doctor came in to tell us what he found, which was...nothing!  No cyst.  Only an air pocket and a little clear fluid.  There was nothing to send to pathology for testing.  The tooth came out whole, so the surgery was uncomplicated, and he just scraped the bone to encourage bone regrowth, and stitched her up.
I am not sure how I feel about this.  On the one hand, I wish he could have aspirated the area first and found out that it was air, and then perhaps we could have saved the tooth.  It's hard to reconcile myself to putting her through all that, when there was nothing there, but apparently we couldn't have known that.  It makes me wonder what the CT Scan report said, but I looked at those scans myself, and something was there.  So, is it a healing?  Maybe.  Basically the doctor treated it as if it were the worst possible type of cyst, and it wasn't that.  I am thankful because she won't have to have the follow-up x-rays as often as he originally said.  We will get one in 6 months, and go from there. 

After the surgery, we had a harrowing ride home in the snow.  I took Todd's little car because mine is no good in the snow, but I still didn't like the ride.  The  roads looked as if they hadn't been plowed, even when I was traveling 1/4 mile behind a snowplow.  The ride took almost 2 hours, including a stop at McDonalds for a smoothie for her (without a straw!) and some breakfast for me.  I was so happy to get home, but the car got stuck in the driveway when I stopped to put up the garage door.  Then, after I rocked it back and forth in the snow to get it into the garage ever so carefully, I heard the hiss of all the air leaving the front tire.  Of all the places to get a flat tire, I think one's own garage is the best!  Last Monday, we canceled the Girl's recheck on the surgery because of another blizzard, and then it snowed last night and this morning!  Now, it has rained all day (sounds like freezing rain now), and will rain all day tomorrow too.  Tomorrow is the new appointment for follow-up.  I hope it is the end of the story.  For our next adventure, we get spacers for orthodontic work on Monday.

Edit 4/7/11- The actual name for the cyst is "traumatic bone cyst," which is really no cyst at all. We'll have a follow-up x-ray in 6 months at the dentist's office.  

Oral Surgery Adventure

We've just returned from seeing an oral surgeon about a cyst in The Girl's jaw.  While we had to wait way too long, considering the office wasn't even busy, I liked the doctor quite a bit. 
Before he came into the room I heard him stop outside the door to look through our papers.  Then I heard him mutter, "Oh, interesting...."

Just what I wanted to hear.  Kinda glad the girl was in the bathroom at that point.  She was trying the old trick that we use at restaurants...if you get up and go to the bathroom, the food will come.  Turns out it works with doctors, too.  When she came back in and found him there, I could tell she wanted to laugh out loud!

The cyst can be seen plainly on her x-ray.  The dentist noticed it on her panoramic x-ray back in September, but we were waiting for insurance to kick in before we went to the surgeon.  The doctor said he sees this once about every 3 years, and that's with 50-60 people going through the office in a day.  Normally they would form after a root canal or from an infection, but she has never had any issue with her teeth.  Back in September the dentist said that it would compress a nerve and could even break her jaw if left untreated.  The doctor today could feel the soft but firm spot on the inside of her gums with his finger, but she can't feel it and has never complained of any pain there.  Nonetheless in order to get the whole thing out, he feels he will likely have to take the tooth, too.  It looks as though the roots are not in the bone, anyway, so it is already probably not viable.  He said, "Good catch, dentist."

Our next step is to get a CT Scan.  I am calling ahead to make sure that the place we will go can actually handle a scan on the "mandible with attention to the roots of tooth #19," because I only want to do this once, and it sounds like an unusual request to me.  After that, we will schedule her procedure, which will be done under laughing gas and anesthesia in the office.  Good times.  After they get it out, it will be sent away for pathology so he can tell us exactly what it was.  (It's not cancer, he assures me.)  She will have to have follow-up x-rays frequently.  The doctor said he knew one patient who had it come back after 28 years!  As for losing the tooth, she is young so her bones will rebuild, and the third molar and wisdom tooth will take the space.  So maybe she will not have to have the wisdom tooth out in the future. 

This kid...always with the strange diagnoses.  She has a geographic tongue, too.  I think she should become a medical professional so she can tell patients, "Yeah, I've had that too..." all the time!  Although she seemed nervous in the office, she didn't burst into tears when we got to the car, so I guess she'll be okay through it all.  A "work in progress" series of blog posts is in the making.