How Do I Do This?

[RainyZ]

I posted some time ago about my DD and my thinking she had Celiacs. Well, I took her off gluten and she almost immediately showed improvement. Diapers less frequent and stool not so mushy, etc. Her cheeks looked fuller and she seemed much happier. She began gaining weight at almost double normal rates. I don't know why I let other people push me into believing it was all in my head and she didn't have gluten issues.

By other people, I mean my husband and my dd's pediatrician. When he asked how she gained a pound in one month (she was about 14 months, I think and hadn't gained weight in months) and I told him I took her off gluten he said, "I don't think that is it." Like a moron, I told my husband what he said and then he just wouldn't support the diet. So I gave up. Now, a couple months later I take her to the pediatrican because she couldn't get over a cold and instead of gaining half a pound like she should have at this age, she lost half a pound (not due to the illness).

So her pediatrician says to me, "How much does she eat?" and I whip out the trusty food diary I've been keeping since she went off the gluten free diet and show him the calories, etc. He had recommended 1200 a day. He asked about diapers and then said to me, "Is this is how much she is eating and she has that many diapers, we may be looking at a malabsorption issue. I would like to refer you to some GI people. I think she has Celiacs." My jaw hit the floow. He actually said it as if we had never had any discussion about this before! I reminded him how I had taken her off of it before and she was gaining weight and he asked me what happened that I let her have it again? I felt so stupid saying, "You told me that it couldn't be Celiacs because she was so young." He did say, "If I had seen this food diary before, I would have tended to agree with you then." I kept telling him how much she was eating. That same visit he told me it couldn't be Celiacs, he told me to stop breastfeeding and I listened.... I know I need to stop beating myself up over this, but I can't help it. I KNEW what it was and just kept on giving her the bad foods anyway. It is not that we eat much gluten. My son loves pasta and that is where she would get most of it.

So then I tell my husband who really doesn't want to hear it and he seems more excepting now. The first time, he constantly complained about not being able to go to the restaurant he wanted or why did he have to dirty so many utensils to prepare food. This weekend we went out for his birthday and he sent her steamed asparagus back because they put bread crumbs on top of it even after we said just steamed with butter and lemon. He even asked the waiter to make sure it was new asparagus versus washing it off the one they served. I wasn't at the table at the time and about fainted when he told me he took care of it. It was nice to see him making an effort.

I am going gluten free along with my daughter and I've asked my son and husband to be gluten free around the baby. At 18 months, she doesn't understand why she can't have something. I have many gluten free alternatives for her, but she wants exactly what my son or husband have. Both my ds and dh did not care for the gluten free alternatives, which is fine. I put gluten stuff in their lunches and my dh can have anything at work.

I am so mad at myself for caving. How could I let that poor little girl suffer because of other people's opinions???

Does anyone have any suggestions on how to tell people? Not the general public, but people who need to know? My neighbor was telling me that her daughter is friends with a little girl who has Celiacs and also has issues with tomatoes, citric acid and lactose. She tells me "I just give her Rice Krispies." She sounded so proud of herself that I didn't tell her they are not gluten free.... I whimped out again.

My big concerns are special occassions and people thinking she can have "just one bite" - like my husband.... and I am sure the rest of his family....

I am just so upset... sorry for the rant.

[aikiducky]

  RainyZ said:

She sounded so proud of herself that I didn't tell her they are not gluten free.... I whimped out again.

In the future, when you almost wimp out again... think about this post and how upset you were with yourself afterwards for not standing up to the doctor. You won't wimp out of awkward situations so easily if you remember that.

In social situations, you just need to open your mouth and explain, and explain, and explain. It gets easier after a while, because you develop a standard story that you can explain to people, and after a while family and friends get used to the idea.

Pauliina

[dandelionmom]

I've found that you have to learn to be tough and even a little assertive when it comes to our kids with this disease. People just seem to love giving kids gluten. Think of a quick simple phrase that you just have ready for situations that might make you wimp out. Something like, "Thank you but no. She gets too sick and a cookie isn't worth it."

It also helps to supply people close to you with safe treats. That way they can still treat her to yummy things without concern.