just had my daughter tested for celiac disease

therealpoepoe · Joined: 13 Aug 2008 Posts: 2

Hello all. I just had a blood test done for my daughter to check for celiac disease. I have had all kinds of issues and have seen many doctors to try to help her.
She has been diagnosed with M.D. but the specialist can't figure out what kind because it's nothing she's ever seen before. I told them that she was advancing well, even hitting her milestones early up untill she started eating table food, then she just stopped and her weight gained slowed back down again. However the specialist insisted that M.D. has nothing to do with your diet. She has resorted to sending her to other specialists to see if the muscular dystrophy is a side effect of something else.
Potty training was horrible because she was constipated for two years. The doctor told me it couldn't be the milk, but when the ocupational theripist told me that it could possibly be milk, I removed milk and the constipation stopped.
when we fist gave her baby cereal, she became constipated and I had to switch to rice.
I recently read that low muscle tone, muscle wasting, low appitite and irrigualr bowl movements are some of the many possible symptoms of celiac disease, and immediately called the doctor to have her tested. The doctor said the this disease is very rare so doubts that this is what my daughter has. but to me this would explain so much. (after reading about adult onset of celiac, my husband thinks he may have this as well, but will probably not be tested unless my daughters test comes back positive)
We will not have the results for a week or two, and I am thinking about removing gluten from her diet now and monitoring her weight, bowel movements, and muscle tone (like timed running) to see if it has any effect on her. I feel pretty stongly that this is what she has and I feel guilty every time I feed her something I know has gluten in it. but after reading up on this, A LOT more things than I thought have gluten in them. This will be a difficult transition for an already picky eater. Sorry for the novel, I'm just impatient for her results!

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1469 Location: GF Kitchen

Welcome to the group!

I am sorry that your young daughter is having such a difficult time with her health.

There are many people on here that can answer your ?s better than I can, so I will defer to them. Start out with the Boot Camp thread that all has posted. It will answer many of your ?s.

I do know that many people want to have the 'golden seal' of diagnosis. If you are in that category, then your DD will need to have a biopsy (actually then need to take about 10-15 places to examine for CD). It is very important that your DD still consume gluten until after that test if you want the written diagnosis.

If you feel that it is not good to wait in your DD's case, then by all means, start with the GF diet.

You might actually find that your picky eater isn't so picky when food is no longer making her feel sick.

Milk, gluten, corn, eggs, or some other food can make you have either the big D or constipation issues. Some people even respond with neurological issues to those foods.

I have fibro in addition to the CD, so I am not sure which has made my muscles so weak, but I definitely have wasting/waining issues with my arms and hands.

I hope that you find a way to help your DD get to feeling better. From the sound of your post, she already has a huge advantage......her mom! You don't take the dr. answer as gospel and you think outside of the box. While we as parents can also have false hope, you are continueing to search for ways to help your DD have a better life. My hat is off to you with respect!
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ostrich · Joined: 30 Mar 2006 Posts: 4140 Location: Nebraska

Hey Poe! Welcome! I'm sorry you two are going through all this. Hopefully we can help.

First of all, how old is your daughter? You should be aware that CD testing for kids under 2 can be inaccurate. Since the blood work is already in, and I'm assuming you don't want more testing done, then you can try to put her on a GF diet and see what happens. If you're still breastfeeding her then you'll need to go on the diet too.

Here's the Boot Camp thread MrsP was talking about. It has alot of good info. Good luck! Smile

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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

therealpoepoe · Joined: 13 Aug 2008 Posts: 2

My daughter is 5 years old. We have been trying for years to figure out what is wrong. She has already had a muscle biopsy for the M.D., and I would rather not subject her to another biopsy unless it's necessary. I learned a while ago not to take the doctors word as gospel. They have been wrong more than once. I intend to follow the doctors orders, but if I think something is wrong (like celiac, or her milk issue) I will demand tests be done despite what the doctor thinks. The blood test combined with my own carefully recorded observations should be enough for a definitive answer as far as I'm concerned. If she starts gaining weight and muscle on a gf diet, then I see no reason to haul her off to yet another doctor, for another test. Poor girl is developing a phobia of doctors, always wondering what their going to do to her next. My grocery store sells GF bread and such so I guess I need to go shopping today. Thanks for the boot camp link and the warm welcome.

ostrich · Joined: 30 Mar 2006 Posts: 4140 Location: Nebraska

Just FYI, some of us discover other intolerances that get hidden while one is still on a NGF diet. So your daughter might have a problem with gluten and lactose (for example). In other words, don't expect the GF diet to be a wonder cure. It might be, or you might have more digging to do.

The decision to get further tests is a personal one. Some of us on here were tested, some not. You might want to check out this thread on testing.

If you do decide to keep her GF but don't like spending money on pre-made goodies, please check out our Recipes section. If you're in doubt on a recipe, look for the Tried and True (TNT) graphic.

And make sure you let us know if you have any more questions. Smile

_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

aklap · Joined: 02 Oct 2004 Posts: 8506 Location: WI, USA