One Week Gluten Free And Seeking Answers

[lbstudymom]

This is my first post so I may go off topic. Please bear with me. I am the mother of 4 children, 2 boys and 2 girls. My 19 yo son is dx with ADHD, but I know its more than that and the doctors have never agreed. My 16yo son is dx with Autism, but his symptoms are not completely typical. He also is very thin and just recently seems to have stopped wetting the bed. My 15 yo daughter is the one trying the gluten free diet and hence got me interested in the subject. She has been having bowel movement accidents every once in a while for the past few years. I thought she was just being lazy or waiting too long to get to the restroom. I talked to the doctor about it, who said it was probably nothing and said she just needed to plan ahead better. I recently found out that the accidents are more frequent than I knew and now she is telling me that these accident would be preceded by severe stomach cramps. Tonight she said that her BMs are always diarrhea. She started on the gluten free diet a week ago and says that already her stomach feels better. She started the diet after my sister found out that she has Celiacs. My sister subsequently heard about my daughters issues and begged me to have her tested. That test came back today as negative. My daughter says she is staying gluten free anyway. Finally, my youngest daughter is constantly saying her stomach and head hurt, pretty much on a daily basis. My family says she is faking it to get out of going to school. She is also sensitive to sound and light. Finally, she has a very vivid imagination to where people think she is strange.

So, here are my questions:

1. Can my daughter be feeling better after only one week of the diet? She has been very strict about it.

2. Could all of these other issues be summed up to gluten intolerance?

3. Is it common for pediatricians to be uninformed about the Celiac test and false negatives? Ours had never heard that it could be false negative, and now that my daughter is gluten free is it worth testing again anyway?

These are the questions I could think of but any information is appreciated. Thank you in advance.

[Rowena]

I can only answer your first two questions with a complete knowledge

1. Yes it is possible to notice a difference in a week. I noticed a difference within a few days. Of course, this isnt to say that your body is completely normal again by a week later. It does take some time to heal. But once you stop eatin what is makin ye sick, then the body can focus on expellin all the bad stuff.

2. Celiac/gluten intolerance can affect just about everythin, and there are a wide range of symptoms. People get these symptoms in varyin degrees. I will just tell you that I have had skin problems, digestive problems, irregular periods, poor health, miserable cramps, and a whole lot more that have cleared up because I started eatin gluten free. I tested negative for celiac disease, but after tryin the diet, and everythin clearin up, I talked to my doctor. She officially stated I am gluten intolerant. But forewarnin, gluten intolerance is generally somethin people discover on their own because the tests for celiac disease test mostly for an allergy (or damage to your villia or however its spelled) It does not necessarily show up in the tests. (As for the cramps and headaches, I had those in hs, at first it was chalked up to endometriosis, then reflux, but I have a feelin gluten may have been involved as well)

3. I would say get a second opinion from another doctor. And if the other doctor says the same thin, I would say, go with what helps your kids most. Sometimes ye just gotta do things on yer own... If it means start your other kids on a gluten free diet, then do it. I say a gluten-free diet cant hurt none more than what they already have to live with.

[Dixiebell]

About your child with headaches and stomach aches, my son started out with those symptoms as well and it progressively got worse.

Ask for the DGP test. It is supposed to be more sensitive.

We tested negative but we feel better and our symptoms are gone. My sons GI told us that the tests were not 100%, but that it was something to start with. It may be that your daughter just does't have enough damage to show up on the tests.

"Finally, my youngest daughter is constantly saying her stomach and head hurt, pretty much on a daily basis. My family says he is faking it to get out of going to school."

My Husband and family said the same thing, but I knew better. Go with your mommy instincts.

[srall]

I just posted this morning on the Parents with Kids board that I'm now doing the gluten challenge on my daughter. She is so desperate for relief she is completely willing to give up her usual favorites of pizza, mac and cheese and hamburgers. We'll see how this really goes, but as her mother I cannot see her in such compromised health anymore.

As for getting to the bathroom in time and planning ahead: Here's a little TMI for you. (This issue does come up a lot on this board so I don't feel too bad)

One of my big wake up calls about the state of my health was because of this incident. I was out shopping one day and my stomach started rumbling and gurgling. The store I was in didn't have a public bathroom, and considering what was about to happen I just wanted to go home and use my own bathroom. I was 5 minutes away from home. In my car on the way home it became very apparent that I was likely not going to make it home. It seemed I was hitting every light...slow cars in front of me. And as I was sitting there in traffic I actually had to give myself permission to just let it go in my car and then just clean up the mess when I got home. Well, thankfully I made it home in time, but I couldn't believe I had so little control over my body that I had told myself I could just go in the car.

Your daughter is feeling better and I guarantee she's going to continue to improve. Once she's feeling normal after feeling like crap for so long, she'll probably get even more strict with her diet. For years doctors told me migraines were normal, my horrible nausea during pregnancy was all in my head, my fatigue was because I was working too hard. Gluten free opened up a whole new world for me. We are now taking the house gluten free and I'm so happy.

[GFinDC]

Worth testing again is an good question. But I don't know the answer, only the individual can decide. There is not a lot of benefit to being diagnosed in the US. There may be more research studies willing to use her as a guinea pig in trials, but that is not a great reason to get diagnosed IMHO. In England I think they have a tax break for buying glutenfree foods, but there is a much lower benefit tax wise here. It may not be the best thing for her as far as getting health insurance later, not sure on that though. The best test in reality is if she gets sick from eating gluten. If she does you really don't need to know anything else. Staying on the gluten free diet just makes sense in that case. Some people do want the diagnosis to fortify their will to stay on the diet. I think it is much easier in that regard if you are someone who has significant bad reactions to gluten. She should be aware that for some people their reactions to gluten intensify after going gluten-free. The yet more sensitive to it and notice or actually have more intense reactions.

[lbstudymom]

Thank you everyone for your help. That is pretty much what I have heard about the testing part. I am just glad my daughter feels better. I am seriously thinking about putting the whole family on the diet. My youngest asked me to wait until after Christmas...she doesn't want to miss out. But her symptoms arent as embarrassing as my oldest's.

[Marz]

This is a bit of a controversial area - many people believe that Autism can be greatly improved on a gluten-free, casein-free diet (Gluten-free Casein-free). If your children with Autism/ADHD don't feel better gluten-free, or they initially improve and then go back again, try casein free as well. It's a strict diet, but if their lives improve it will really be worth it.

I say controversial, because the medical "research" hasn't found a direct link, but there's a growing group of parents that have seen a significant improvement. Obviously their opinion is seen as biased

In my opinion, some people's autism/ADHD is made worse with gluten in their diet, I don't think it *causes* autism, it just helps to be off gluten. And I think in some cases gluten isn't the culprit. In your case, with family history and all your children having problems, I'd *definitely* suspect it!

Many people on this forum have had neurological issues clear up after going gluten free, including eating disorders, bipolar, depression etc.

[lbstudymom]

Thanks Marz... I am trying to convince the kids' dad to try it but he doesnt live with us. He is bipolar and schizophrenic so I wonder about that too. My daughter is convinced she is cured and I'm sure she will continue. I am going to at least start buying brown rice pasta, spaghetti, and bisquik for everyone because there is no big taste difference, and it will be cheaper and easier that way. The casein free will be a huge challenge because my son LOVES milk, and everything with milk in it. One step at a time and we'll see what happens. Thanks again for the advice.