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What Should I Do


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#1 scaredparent

 
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Posted 05 October 2004 - 08:26 PM

I am afraid. I am reading about how tricky it is to diagnois this disease. Is there an age that it might be undiagnoseable? My son is 15 mo old and they did the blood work to day and on Nov 3 we are doing an endoscopy and a colnoscapy and a dumping study. Is it better to wait or go ahead with the test. When my son was born he weighed 8lbs7oz and he is now only 19lbs15ozs. I am very confused adn don't know what to do. I have 5 children how do you cook with out putting the rest of the children and yourselves on the diet? He got sick at 3 mo old when I started him on baby cereal. I see alot of your children just like my son. Heelp I am despart for answers?
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#2 jenr69

 
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Posted 07 October 2004 - 11:15 AM

Hello. Try not to be afraid. I know it is scary. My 19 month old doesn’t quite weight 21 lbs yet. I have a 3 year old son as well. Just this week we got the results of the biopsy from the endo and it confirmed what we already believed. We’ve been excepecting this confirmation since early Sept. Her bloodwork came back positive and my Dad was diagnosed with Celiac’s about 3 years ago.

First, it is scary to see our kids not doing well and not growing! But, you are on the right track – get the tests done. The earlier the diagnosis is made the better. Then you can take action. If Celiac’s is the cause of the problems, your baby will get better. He’ll get bigger. He can grow and thrive by living a gluten free life.

Second, it will be a learning process for everyone – I believe that the whole household should not go gluten free simply to make it “easier.” You’ll be able to learn ways to adapt recipes, find common non-gluten ingredients and serve those. For example, Bush’s baked beans are gluten free. So, if you like baked beans and want to buy the pre-mae ones, just get Bush’s. Sure, the pastas, breads, crackers, etc., will be harder, but its DOABLE! There are so many resources out there to help you begin to cope and learn how to cook gluten free! Tonight in my house we are having spaghetti and meatballs. The Newman’s Own sauce is gluten-free, the meatballs are gluten-free (homemade), and I’ll just boil up two pots of pasta noodles (and drain in separate colanders, of course). My daughter is not yet a big bread eater, so I’m not worried about her wanting one of the rolls with dinner – if so, I’ll pop out a gluten-free piece of bread. The challenge, in my opinion, is organization and planning ahead. Its gonna take our house a while to adapt, but I know we can do it.

Third, I think this initial stage is the worse – not knowing, worrying, watching our little kids go through the tests. Its hard. Most people don’t understand the stress on the whole family. But try to stay positive. Good luck! Hang in there! Hugs to you!

Edited to add: It may be "tricky" to diagnose, but you are on the right track, because he is showing symptoms and I assume his blood work came back positive. The small intestine biopsy (done with the endo) should tell you if its Celiac's - if he's having symptoms then damage has been done, so you should get an answer. And, its very good to get an early diagnosis!
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#3 celiac3270

 
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Posted 07 October 2004 - 01:00 PM

I'm not sure about doing an endo at 15 months......not sure it's bad, either, but just questioning how old one should be before undergoing slightly more invasive testing. I know I've seen posts about how young is too young for the endo; try a search.

I'm almost 14 and I have a nine-year-old brother (almost 10). I'm the only one in my family who has celiac according to bloodwork, though I think my mom has it cause she gets bloated after eating large amounts of gluten and my brother might cause he is REALLY skinny like I was....he weighs the same that I did at his age. Anyway, if you have five children, four of which aren't celiac and yourself...mabye a husband.....then it would be quite expensive to go on a gluten-free diet. People will tell you that you just need to avoid the special products, but that leaves you with Lays potato chips, a select few other mainstream brands, and then the basics (fruit, veggies, meat, etc.). While this is okay for adults, it isn't very child-friendly....anyway, I you don't need to put your entire family on the gluten-free diet. You do, however, need to be very careful about keeping all the foods and cooking things separated and making sure everyone in your family knows how serious this.

You'll need separate pots, pans, a toaster, and cooking things (spatula, whisk, etc.). You may not need all this right away, but you will eventually. Make sure that if you use one fork to stir some gluten-noodles, you do not use that same fork to stir something else or to feed your little one. If a knife goes into a jar of jelly or peanut butter or cuts butter, then touches a glutened food and double-dips, it has just contaminated the food. You'll read this all over, but it's important to be really scrupulous about this. Read around and you'll find some posts on cross contamination. I remember quite a few, but don't recall where they are on the board....a quick search should take care of that.

-celiac3270



P.S. Oh, I forgot to mention, keep a postive attitude....you'll get used to coping with the diet and however long it takes, eventually it will all fall into place. If it takes you a year to learn the diet and eliminate all the hidden sources of gluten from your child's diet, it's okay. You're lucky to have caught it this early, so if it takes awhile to work out all the specifics of the diet or if you mess up a few times, don't panic. :D
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#4 tarnalberry

 
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Posted 07 October 2004 - 01:46 PM

lol... I'm one of those people who'd say you can just stick to naturally gluten-free foods. I guess my kids (years in the future) are going to be shocked when they get to school and see food come in packages. ;-)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 ryebaby0

 
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Posted 09 October 2004 - 12:31 PM

This is the worst part of diagnosis -- the waiting, the panic, the grieving, the worry. Consider yourself lucky that your doctors thought of celiac as a problem. It is also easier to manage a child's food allergy if they are very young. But a healthy life is precious, and worth the effort.

My advice is to go slow, don't read too much (it just gets so overwhelming to try and figure everything out and raise a bunch of kids) and do whatever works for you. For some people, that's "whole food" cooking. For some, it's everybody goes gluten-free (but that is very expensive if you are using prepared foods). Some people very successfully have a "split" household. For most of us, it's some combination of those depending on the day of the week and how much else we have to do.

My son has been gluten-free for 1 year, November. My husband is probably celiac disease as well, and it took us this long to think of half the family being gluten-free as a real problem. It's just part of the routine now. You're going to feel overwhelmed for a while, but it will get better. Take it day by day, activity by activity. You can do this!

Joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton




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