While I could call this Jessica hurts her back and has trouble recovering from her allergic reaction, I'd like to share our visit with the GI doctor that we met yesterday. Since my back was not feeling well I may be less charitable than usual, but the visit was pretty much a waste of time from our point of view. The medical assistant asked us the most questions. I liked her even though she kept calling the girls Princess. She spoke frankly about embarrassing topics like bowel movements and stained underwear, telling my daughter that these types of conversations were normal around the hospital. They weighed Jill, took her height and then went into a small room where she asked more questions about her health history. Some of the questions were standard, and I'm sure these are normal questions they ask everyone, but it has been twelve years since Jill was a baby and I have no idea when she pulled herself to standing, or rolled over for the first time without checking my records.

When the doctor arrived he sat down and asked us why we were there. We explained that Jill's pediatrician had recommended a visit after bloodwork indicated that she had celiac disease. He consulted paperwork in front of him and nodded before explaining that he would like to have her scoped. In order for an official diagnosis to be handed down three things need to happen. The patient must positive labs, the patient needs to respond to the gluten free diet, and the patient needs to be scoped in order to confirm that intestinal villi show signs of the disease. That was his position and he liked it, repeating it at intervals in different ways so we would understand that without the endoscopy there would forever be a cloud hanging over her as to whether or not she was a celiac despite his statement that with family history, you're at an increased risk if a first degree relative has autoimmune conditions, and the labs. Supposedly the third step is a safety net of sorts in case patients were unsure if their symptoms had improved or their labs were falsely positive.

Most of the time he spoke to my husband and he didn't glance at any of the paperwork we had completed, preferring to ask us questions himself. I didn't have a real problem with that at first, but I was under the impression that he hadn't done any research on Jill before he walked into the room and that really annoyed me as the hospital had repeatedly called us to make sure that we were going to be at our appointment and were going to arrive early to complete said paperwork. He said that sometimes people need to hear that they have a condition after a test like an endoscopy to change their behavior, and there was the possibility that Jill who wants to be eating what everyone else does will suddenly adhere to a strict gluten free diet after the scoping, if it came back positive. When I explained to her that the scope was an invasive procedure he waved that away by explaining that she would be out the entire time and not feel a thing when she woke up.

We spoke to his nurse who reiterated everything the doctor had just said. We could take a class that would teach us how to live the gluten free life, but unfortunately it is only offered during the week at one o'clock so we would have to pull Jill out of school again to have her attend this class. Jill was crying during the appointment and on the way home we said that she had a choice to make. She can take the gluten challenge, and possibly get scoped if we decide to go ahead with that, or she can continue the way she's been eating. We did warn her that if she takes the challenge she will need to keep eating gluten for the entire month so this scope will be accurate. She wanted some time to think about it so we said that she could have until the end of today. I was pretty sure she would pick to have it in her life again which is what she told me after school. My husband and I are hoping that once she starts eating it regularly her symptoms will return, she will feel awful, and others will see what I observed back when we first suspected that it was an issue for her.

Naturally I'm apprehensive about this, but I think she needs a hard reality check and maybe it will be like some people who need to get mad drunk on a certain type of alcohol before they avoid tequila or whatever their poison of choice was. I don't think it will take long before she starts noticing that she doesn't feel well and this challenge means she eats as much gluten as she possibly can and has something with it at every meal so it will be pretty brutal for her and for us. I don't want her to get sick or have her nose start bleeding again. We will obviously intervene if things get really bad, but I am not looking forward to this next month. I already feel like garbage. This means gluten is back in my house when I can't have it, and I can't afford to ingest any accidentally since I know what happens when I have it, but if this is what it takes to get her to realize that this is damaging her health and making her feel like crap, then I guess that's what we're going to let her do. She's thirteen and we can't constantly monitor every bite of food she has.

We went to an Indian restaurant last night and I was really proud of my youngest daughter when she said she would rather just stay on the gluten free diet without taking the challenge. That kind of resolve is admirable in an eleven year old and we told her that the decision was hers to make either way. When I asked what the difference was between gluten and treats she said that treats were sugary snacks we wouldn't normally have and gluten could be a piece of toast or a muffin. Both girls have shared specific problems they've encountered when they eat gluten. Jill's hands and feet itch. Jane says that her stomach doesn't feel good and I'm actually more interested in finding out whether she has celiac disease than confirming that Jill does as her test came back negative so we don't know if that was her being more compliant than Jill, or actually not having the disease. I explained that things were not going to change at home regardless of what the test said, and I wish I would have thought to ask the doctor what he would say if the scope came back negative as when we were in the room he said that his personal opinion was that Jill did have the disease.

Probably the most disappointing thing about the visit was the lack of hope. There was no talk about Jill's growth and development, no real nutrition information other than the mention that sometimes celiacs are anemic, and no methods of coping for us or for her other than to suggest this class. He rarely spoke to or looked at her when he was speaking, and I felt like he was annoyed that we were against the scope when protocol consists of the dietary changes, the labs, and an endoscopy. The other day I saw a Twitter chat about how upset some conventional doctors were that people flocked to those that they considered quacks. When we were at the gluten free bakery we ran into a woman whose son had food allergies and other health issues. By working with him and tweaking his diet she was able to introduce eggs back into his diet, and that was more of what I expected from a consult at Children's Hospital. I wanted to hear that they were going to assess what her different vitamin and mineral levels were, and get a dietician to work with her so she could see what a healthy, balanced, gluten free diet was. I also expected to hear some words of encouragement that we as parents were doing the right thing by questioning a procedure that was quoted as being between three and five thousand dollars.

A brother-in-law of mine works in a building across the way from Children's Hospital and he said that when they talk to their patients about procedures they are very blunt about what it will entail so there is no confusion about what is going to happen to them. I understand that you're going to treat children differently than adults, but at thirteen and a half we don't need to sugar coat things for Jill and as someone who has been scoped, I can share my experiences with Jill. It was not a fun procedure, I spent thousands of dollars having it done, and came away with no new information or any kind of next step, where do we go from here if I don't feel well? The doctor didn't mention vitamins and the nurse was pretty useless when we talked to her about an elimination diet for the food allergies. I want the healthiest happiest kid I can get and I left Children's Hospital with a sense of having been run through their system. I respect the level of education that these people have, but as far as my daughter goes, I was less than pleased with our consult. I felt like I was a naughty child, or not quite bright enough to understand that if the protocol says to scope, then everyone should get scoped regardless of our concerns.

The good news is that I've taken it upon myself to be an advocate for myself and my children and I'm not going to let that experience stop me from networking and doing my own research. Food can be tasty, nutritious, and even fun while you're eating gluten free. As far as overall health goes, I'm happy that my children are no longer the drugged up babies that we used to have here at home. We no longer make as many trips to as many specialists, the eczema and ear infections are gone, and we have our challenges, but considering that my children used to be on quite a few prescriptions including around the clock nebulizer treatments it makes me glad that they are able to keep up with their classmates in many areas. They are petite and I am concerned about Jill being behind developmentally, but apparently I can't expect to get answers from her GI doctor so I'm either going to find a new one, or I'm going to do more research and see what I can uncover, and maybe that means reaching out to some of the dieticians I know and putting a program together for her. I wish they would have gone through some of the psychological ramifications and talked to us about eating disorders, but they didn't and I'm not going to waste any more time there. So I have a plan and that makes me feel better than I did.

The outlook is not that bleak. She eats a wide variety of foods and she's a very smart person who sometimes doesn't get the grades that her parents feel that she should. She's loving and fun and we wish she would shower more often, but our main concern is that she knows she is loved, cared for, respected, and that her opinions matter. I don't want to raise a child who keeps cheating on her diet, and I do not want an eating disorder to crop up if she doesn't have one already so if giving her gluten for a month will set that issue to rest, then I guess that's what we're going to do for her, because we do love her and no parent wants to see their child deal with the rashes and other issues that accompany a major digestive problem. Hopefully my back issues will get resolved soon, and I'll do my best to keep track of her progress as the gluten challenge continues. We are looking into some exercise programs for her since she isn't in any sports and we no longer have a YMCA membership. We want her to be active and to realize that there is an entire world out there that is hers to explore regardless of what kind of dietary restrictions she may have. I hope this isn't as painful as I believe it will be for her, but then again, some lessons can only be learned the hard way.

Until next time,