We have largely been looking forward to today’s appointment with the gastroenterologist. After three months of a strict gluten-free diet, we were anticipating an appointment where we would tell the doctor that it didn’t work, nothing changed, and could she please start eating normal food again. I was dutifully preparing to tell him all the idiosyncrasies and hiccups we experienced, like how the antibiotics she took in early July when we thought the bone was starting to become infected gave her horrible diarrhea—something that doesn’t really happen anymore since most antibiotics aren’t very effective for her. (Her reaction to the antibiotics made me realize that the arm probably was never infected, especially because when she took another course of them later that month for the decidedly infected finger, she had no diarrhea at all.) I printed out the genetic research study’s findings for him so that he could see that gastrointestinal motility dysfunction is reported with this condition. I had it all rehearsed and ready to go.
You know what they say, though, about the best laid plans…
The first part of the appointment went according to plan. I told the doctor about Gracie’s new diagnosis and how the GF diet didn’t change anything for her. His response stopped me in my tracks: “Well, let’s schedule a repeat scope as soon as possible so we can see if she does have celiac. Can you do it this week?”
I didn’t even get a chance to offer my rebuttal because I was so stunned. She has to go under anesthesia AGAIN? Again so soon after the last time? He didn’t tell me he was going to re-scope her after the GF trial; what he told me was we would try the diet and if it worked, it would prove that she had celiac disease. I thought that was enough. I feel betrayed.
The doctor said that if the changes are still present on Grace’s small intestine, we will know for sure that she does not have celiac disease. If they are gone, it is his assumption that the gluten-free diet cured the intestinal lesions.
It took me a few hours to realize why this situation troubled me, other than that I hate having to tell my child no, she cannot have cupcakes at the birthday party, or garlic bread, or french toast, or any number of other delicious foods because they contain gluten and are not a part of her diet. No, the situation troubles me because all along I’ve been working under the assumption that the horrendous diarrhea Grace experienced last August and September was due to some sort of infection (after a solid six weeks of extreme diarrhea, it suddenly disappeared the day after she was admitted to the hospital and started on IV antibiotics).
If it was an infection that caused those initial changes in Grace’s intestine, there is a good chance that the infection has fully healed in these last eleven months. If the infection is fully healed, Grace’s intestine will no longer have the scarring that led to the celiac diagnosis. If she does not have the scarring (and don’t get me wrong, I sincerely hope it has healed), then she is stuck on this awful diet forever. For the rest of her life.
When I initially discussed with this doctor that I did not believe celiac was the cause of her month-and-a-half of diarrhea last fall—because we did not change her diet at all during or after that time period, and the only thing that changed was her antibiotic use, and the diarrhea stopped abruptly when she started the antibiotics—the doctor seemed to agree with me. He said that the number one cause of the intestinal scarring is celiac disease, but numbers two through five were types of infections. At that time, he recommended continuing with a regular diet and following up in six months. After six uneventful months, he told us that the only way to rule out celiac disease would be to try a gluten-free diet. (Nothing about a scope!) He gave me the choice: try a gluten-free diet and see him again in three months, or continue status quo and see him in six months. How I wish I’d have chosen the second option! If I had known that he wanted to anesthetize her again, I probably would not have opted to try the GF thing.
Grace is having her scope under anesthesia next Tuesday at 2 p.m. Because of the anesthesia, she will have to be NPO (nothing to eat and only clears to drink) the entire morning—she will not get to eat breakfast or lunch or snacks. She is sure to be cranky and emotional, which will probably not help my general feeling of unease about the whole thing. And, obnoxiously, even though I told the doctor specifically that early mornings work better and Wednesday would be a better day (because I’m already set to work from home that day), the scope is scheduled for Tuesday in the afternoon. Thanks, doc. It’s not as if I thought my schedule was more important than every doctor’s, but a little courtesy would be nice.
Today was a hard day. It stinks to get unexpected bad news. It stinks to spend half the day driving to and from the doctor’s office on the other side of town (why won’t he see patients in the Denver office anymore?!) only to have devastating news delivered at the distant appointment. It really, really stinks to still have to devote six more hours to work in the day while trying to process bad news. (If I took a sick day every time we got bad news, though, I’d never get anything done.)
There’s not a lot of hope for a good outcome in this case—either Grace will have to remain on the GF diet indefinitely or she still has scarring on her intestine. It’s a lose-lose situation. However, if anyone wants to send good thoughts for an outcome I can’t anticipate that is a best case scenario, I’d appreciate it.
I have celiac and so does my mom. I just want to say there are well proven studies that say the intestines can take over a year to heal. So even if Gracie does have celiac, her intestines will still be scarred. And over the years we’ve found some good substitutes for gluten filled foods. Cheerios are no gluten free as are Chex. Bisquick has a gluten free version. Enjoy Life Foods makes the best cookies as well as boxed mixes. Ronzoni makes gluten free pasta that tastes just like normal. I love Snyder’s of Hanover’s Gluten free preztel sticks- you can’t tell the difference. And for bread and bagels, Schar is the best.
K, that is interesting–I specifically asked the doctor about something I’d read that said that many celiacs never heal, and he said that was very rare and not at all normal. Thanks for the GF food suggestions. We have found a few really delicious substitutes and I’m learning to bake with GF flour (I just made some awesome GF cupcakes the other day after I had to tell my girl she couldn’t have one of the cupcakes at a friend’s b-day party). It’s not the end of the world to be GF but Gracie deals with so much other stuff… I wish I could make this little part of her life more normal.
Ugh. Hugs, my dear friend.
Hey have they ever discussed the blood test that can be done to identify celiac? Seems less invasive and potentially more accurate, but mostly Iâm just curious â not qualified to be throwing out blind suggestions from left field over here. 😉
They already did the blood test—it was negative. The doc explained that the scope is more accurate for young children b/c they may not have the antibodies built up yet.
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