The GI DR Thinks My Baby May Have Cystic Fibrosis or Celiac

Well let me tell you there are far worse things to have than Celiac Disease. It is an inherited autoimmune disease that has no cure or meds. The only 'cure' is a life long adherence to a gluten free diet. And you have one big plus in that your child is young and therefore you can start her eating gluten free and she will not know the difference.

Use to gluten free food was hard to find and tasted awful. Now it is far easier, some still tastes awful, but MUCH of it is wonderful.

There are plenty of websites dealing with celiac disease and you can most likely find a local support group. Check with your public library as they may even have books about celiac disease in children along with cookbooks to peak through.

If this is celiac disease, she will not outgrow it. But once gluten (found in wheat, rye, oats & barley(malt)) are removed she will blossom.

Let us know what you find out ok?

1 mom found this helpful

Have they tested her for either? My son just had both tests done for the same reason. The celiac test is just blood work and the cystic fibrosis test is not fun but isn't painful or invasive. You should ask to have both tests done just to rule them out and have peace of mind.

J. D

L.--Hi, Sorry things are a bit rough for you and your family right now. I just wanted to pass on some info to you... "Taste of Home Healthy Cooking" has some gluten free recipes (as well as others based on other health issues), that you may be able to look up and try--go to tasteofhome.com/healthycooking -- If it is celiac she may be able to get the nutrients she is needing from these meals and if not it won't have done any harm.....
Please let us know how she is doing.
Peace

Hi L., it's very nice to meet you. At first I thought you meant colic until I realized your baby girl is 15 mo. old. I'm sorry that I can't help much here as I've never heard of it. If I may suggest a couple of things though, please get her some flintstone vitamins for starters to help in nutrition. And second, try going to ask.com and typing in your question, you may can find the answer to your question there. I have found that ask.com can provide info on almost anything, I hope this helps you in someway and gain some knowledge of your daughters condition. May the lord watch over your baby girl L. and keep her in his ever loving care. God bless you & your little one. Hugs!
Carol

How is he going to test for this? CF will require a sweat test, not a blood test. Not sure about Celiac. Does she have lots of colds, or had other breathing issues? From personal experience, CF does not have the sole issue of failure to thrive. CF is easier to deal with than when our family dealt with it, but there are several forms. Keep us posted.

I have Celiac disease and have for about 2 years. It is getting easier all the time to find gluten free foods. A lot of Kroger brand foods are gluten free and more things are labeling gluten free on the packages. It really it a matter of learning to read labels and know what you can and cannot have. There is a gruop in Lexington called Gluten Free Lexington which is a great support group and resource. They have a website, glutenfreelex.org Your doctor should be able to do a blood test on your daughter and also an endoscopy is a very easy, non-invasive procedure to biposy and get a definitive answer. Most restaurants are becoming more aware of gluten. Carinos and Bella Notte both have gluetn free pasta, Outback has a gluten free menu as well as PF Chang's. Wendy's lists all allergens online and in the restaurants, O'Charley's has a gluten free menu online also. I would also google Celiac disease and read more about it. It really is easy to manage. Good luck and if you have more questions, e-mail me at ____@____.com

K. H.

First of all, you need to know for sure what it is exactly. Your doctor needs to be certain before she tells you. When she says "may be either or" your ears need to go up and you need to ask lots of questions. The GI doctor thought my little 4week old (at the time) had a serious condition, they actually did surgery to correct it, and come to find out, when they got in there to his stomach through an instrument through 3 different holes in his stomach, everything was normal on that end. My 4 week old baby boy already went through his 1st surgery and was in the hospital for 5 days. The final diagnosis was severe gastric reflux. He is now 1 year old, and his problems are controlled very well with 2 different medications for his stomach (which he is finally starting to outgrow thanks to table food). So, the only advice I can give you is this, ask questions, make sure exactly what it is BEFORE they start to treat anything, and if all else fails, get a second opinion. Nothing needs to stand in the way of your baby's health.

Have they done a salt test? My son was DX with CF adn it was all done off a Sweat salt test on his arm. No pain nnd somewhat quick.
We were told he had this and I refused to believe it after all teh reading I did. Now there was a baby there at the same time taking the same test and yep our boys had the same name. I felt so bad as I made them redo the test and I was right my son was not teh child with CF it was the other Nick. NOw this family was told they had a healthy baby now they had to be told of a mix up in the lab..
If it is CF you will have support and there is great docs at Duke. You will get through it and life will be a little different but treasure every second.

From your brief description, it seems there are other possibilities than just CF or Celiac. I have several friends whose children have Celiac disease, and well it can be tedious managing a gluten-free diet, it's not impossible - and shouldn't affect her overall health. CF is more serious, but I'm wondering if they also tested for diabetes? Both Celiac and Diabetes are simple blood tests, so I think they would have done both. My daughter has had type 1 since she was almost 3 yrs. and the first signs were frequent thirst, frequent urination and weight loss. I know how scary it can be to be told you baby is "failing to thrive" because my daughter was not gaining weight well when she was an infant too. I assume they did the endoscopy to check for irritable bowel syndrome. I also have a friend with a child with this condition - usually there are more obvious symptoms than just low weight gain, though.
By the way, if it is type 1 diabetes, let me know. I'd love to help you.
S.

L., I have Celiac and its alot to deal with to start with, but it gets easier. Celiac disease is when your body doesn't process Gluten. Gluten is found in wheat, barley, oats. Corn and potatoes are fine. Your intestines contain a feather like material called villa and this is what catches the nutrients and all the good stuff out of your processed food. I'm still not sure why it does it, but celiac causes the villa to lay down and not work. This causes all the nutrients and so forth to go out with the bad. The symptoms are cronic diherrea, headaches, stomach bloating, moodiness and some others. These were my main symptoms. Since I found out that I have this about 2 years ago, I have reversed most of my symptoms. I find now that if I eat something that has the gluten in it, I either go straight to the bathroom or have an instant headache.
THe diet I eat consists of meat, potatoes, corn, vegatables and fruits. I stay away from processed food and try to eat fresh stuff. Some man made materials such as toothpaste and cosmetics and so forth are made with wheat products so you have to be careful. My doctor says its all or nothing. That even if you eat a small amount its still going to effect you. It may not be immediate, but it'll hit you. You can try this website www.celiac.com, it has alot of good information on it. Its definately not a death sentence, you just have to eat better and pay attention to what goes in her mouth. It cuts down on choices, which may be a good thing. J. H