My daughter is 15 months old and we've been seeing a GI DR b/c she has a 'failure to thrive'. We are going for an endoscopy and biopsy soon, in addition they will be taking 'gastric fluid' to test for CF. I wanted to know from some one who knows about having either... what is it like? How do you deal with this?
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?
Hi Lori, 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 Lori and keep her in his ever loving care. God bless you & your little one. Hugs!
Carol
He thinks it's either Cystic Fibrosis or Celiac Disease?? Those seem like two very different conditions. Neither has a cure, but Celiac Disease would definitely be the less cause for concern. She'd just need to go on a lifelong gluten free diet. It's a lot more common than it seems. We thought my husband had it for a while (he doesn't), and we went on the gluten free diet just in case. Yes, it was a pain, but it is doable. Certain grocery stores have lists and sections dedicated to gluten free products.
If he thinks it's CF, then it seems like they could easily determine that through blood testing. It seems like they'd want to get a handle on that ASAP if it's the case.
Good luck and God bless!!
My daughter was labeled "failure to thrive" at 15 months old also. She went through those same tests then was sent to an endocrinologist. Her tests were normal but we still dont know why she's so small. She has been to a speech therapist and a pyscologist who actually said that at 19 months my baby was aneorexic (whatever). I dont know much about the diseases but I hope your baby is OK. I just wanted to come on here and let you know that just because she's small there might not be anything "wrong" with her even if your drs. think there is . My daughter is 31/2 now and only 22lbs and 34 inches and I've come to the conclusion that she is just small and have stopped seeing the specialists. I decided not to put her through any more testing and drs it was just to hard on both of us and stresses her out. Good luck with your daughter and I hope for the best for her.
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.
Dear Lori,
I was moved by the "failure to thrive" issue to suggest that you might come against this thing from a spiritual standpoint. Has anyone in your family "rejected" or spoken words of rejection over this child? Was anyone expecting a boy and didn't want you to have a girl? Were any words of cursing spoken during the pregnancy while she was in your womb to receive those words? "Death and life are in the power of the tongue: and they that love it shall eat the fruit thereof.
Proverbs 18:21 says and Jesus taught in Matthew 17:20-21 when the disciples failed in their effort to get a young boy healed and asked Jesus why..."And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you. 21 Howbeit this kind goeth not out but by prayer and fasting." Now if the words were yours, just pray and cast those words down to the ground and command that they die right there and bear no more fruit! Do the same thing if they were from someone else and speak LIFE into that girl, command her to "THRIVE" in the name of Jesus! Come against anything that could be "stealing, killing or destroying" her because that is the work of the devil. Then speak LIFE and that life more abundantly, because that is the work of the Holy Spirit in the name of Jesus! I think you will see a dramatic change in her in the weeks following and as you speak life in her body, command all her digestive processes to "line up with the word of God and function as Adam and Eve's bodies functioned in the Garden of Eden". You see, Jesus was the second Adam that restored to us all that was lost when Adam and Eve sinned in the garden, so we have a right to expect that all our bodily functions line up with the WORD, Jesus was called the Word also, and the Bible says God exalts His word above His name! Jesus took stripes upon His back for our healing and bruising for our internal healing too! Meaning that our emotional and physical well-being is so important to God that He allowed His Son to be whipped, beat, cut, stabbed and died for US! I don't care what anyone thinks about my bible believing, scripture quoting advice, I have experienced the healing POWER of God and so have hundreds maybe thousands of other people I have prayed for over the years and I'm here to tell you that I believe your daughter does not have to suffer any longer with this affliction. Word curses can be very powerful and they get more powerful when they are received in faith by those they were spoken over! Please do not be offended in this, I'm trying to teach you and whosoever has "ears to hear" what the Spirit is saying here that many times our "mountains" come from the words that have passed through lips and the only way to remove that mountain is to SPEAK to it! Look at that verse where Jesus said we would have whatoever we SAITH, not prayeth! So many times we pray one thing and then spend the following 23 hours, SAYING contrary things to what we just asked God for! I appreciate Doctors because they can tell us what they think is wrong but they are "practicing" after all. There is a song that goes, "Who's report do you believe? We shall believe the report of the Lord! His report says I am healed, His report says I am filled, His report says I am free, His report says VICTORY!" Now the world sees all this as foolishness, because they don't understand the ways of God. I am praying that you will benefit from this word to you from the Spirit of God. You may feel free to call me if you like for the prayer of agreement anytime. One sends a thousand to flight but two can send ten thousand to flight! Do all you can do in the natural to provide good nutrition, Vemma liquid vitamins are the best in my book but take authority over the "mountains of words" that can harm a little one so early in life! God Bless.
P.S. Remember that with God, nothing is incurable! Jesus was the cure, period! ;-)
Lori--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
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.
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 [email protected]
Kim Hill
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.
Jen D
Hi Lori! I don't have personal experience with either of these diseases, but I had a good friend in high school who had Cystic Fibrosis. All through his teen years he had to go into the hospital once or twice a year (for a few days at a time) to have his lungs steamed or something, just to clear them out. He always felt great after this procedure had been done. His physical activities were limited to an extent, but he was still able to roller blade, ride bikes, etc. It gradually got worse as he got older and he ended up having a double lung transplant about 6 years ago and now he's in great health! I'm not telling you this to scare you. You asked for info, so I'm just telling you what I know. I pray your sweet baby doesn't have CF!
I believe a gluten free diet is a good idea anyway. I give my son gluten free pasta and others things. They're easy to find in the health food section at the grocery store.
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.
shannon
Lori, 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. Jennifer H
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.