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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

From Failure To Thrive To Thriving?
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11 posts in this topic

Can anyone give me any success stories in going from failure to thrive to thriving with your little ones? I've been reading over a lot of the posts here, and I'm trying to figure out time tables, how concerned to be, etc.

I'm asking because my 18-month-old daughter underwent a blood test for Celiac a week ago (we're awaiting the results still) after her weight dropped down to 17 lbs, 4 oz. She had been hovering around the 3rd percentile for weight for months, but she dropped off the charts after a stomach flu wiped her out.

So many of her symptoms match those of celiac disease. We've had her off gluten for a little over a week, and she has shown definite improvement (regular, looser bowel movements, better mood, less waking & screaming in the night...), so I feel fairly certain that she has Celiac.

But I'm really concerned about her weight and her development. She has started to eat a little more now that she's gluten-free, but she's certainly not eating enough to gain back all that she has lost.

So that's why I'm wondering if anyone can give me any success stories. I know it takes a while for her intestines to heal and for her to start eating well, but what kind of timeline are we talking about? If your child was underweight, how long did it take until he/she was really thriving?

Also, how worried should I be that she will have long-term problems with physical and mental development? I try not to get overly worried about this, but I also know that these first few years are crucial in terms of the development of her brain, muscles, bones, nervous system, etc.

Any advice anyone can give is greatly appreciated.

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Hi, maybe I can help some, but I am also curious to read the responses you get! My daughter went gluten-free on March 17th, and though we could see some improvement, her appetite was still low for the first couple weeks. Then, just last week her appetite started taking off! She eats more now then she ever has before. She will eat a bit, then 20 minutes later, want to eat again. She basically eats continually throughout the day. My scale isn't perfect, but I think she has gained most of the 3 pounds she lost before being diagnosed. We noticed growth issues with her long before the abdominal problems, but looking back, some abdominal signs were there then too. I don't know how long it will be before she is back to normal growth wise (or really, what her normal growth curve is for that matter!) but I feel much better that she is putting weight back on. We have had her on supplemental drinks, and I think that really helps as well. Hang in there, I know how scary it is when your baby is that skinny, but it will come back on! Just a side note, but if you do a biopsy to confirm the blood test, she will need to be consuming gluten. We did a blood test, but they scheduled the biopsy right away, so we only had to wait a few days after the blood results and then went gluten free the day of the biopsy.

Take care,

Michelle

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My son from 2 months to 1 yr - was not growing, gaining weight, etc. As soon as he started eating foods - everything reversed. He just turned 3 a couple weeks ago and went in for his well baby check. He is in the 75% for weight and height. I am going to a celiac specialist tomorrow and going to see if they will test my son for Celiac. He has every sign of it. When he was tested at 3 months old the blood test was negative. however, i don't think he had enough gluten in his system to test positive. again - he has every symptom of celiac disease. I'll keep you posted. But yes - he went from being 9 mos. old and still in 3 mo. old clothes to now 3 yrs old and thriving well. Good luck.

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My son was diagnosed when he was almost 2 1/2. He had lost weight about 3lbs over 2 months and weighed 26lbs. We saw improvement in his overall demeanor in a week & things just kept getting better. He has been gluten-free for about 18 months and now weighs 47lbs. He's in the 95th percentile for his weight & 75th for his height. It was amazing to see how well he did with the gluten-free diet. I know it's hard but it takes a little time. After about 6 months on the gluten-free diet he started having normal bowel movements!! It was so exciting!! He went from not having enough energy to climb up the stairs to running and playing just like all of the other kids! I'm so thankful he responded so well to the gluten-free diet.

Good Luck!

Tracey

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I can't give you a personal success story because my children don't have celiac disease, but I can tell you that in nearly three years of reading about celiac disease on the Internet, I've NEVER seen a story of child who has celiac disease who didn't respond to the diet. It doesn't happen the second you go gluten-free, but she'll be growing soon. Once she does start to gain remember that some kids don't gain but so much -- not everybody's at the 50th percentile. My own daughter was always kind of tall for her age but she was always in the 5th percentile for weight. Even now she's 5'7" and weighs just 108.

richard

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Tracy, thanks for the encouraging post! Those of us who are still pretty new can use all the encouragement we can get! My daughter has been gluten-free for 6 weeks, and although she is gaining weight and is so much healthier (energy, skin, etc.) she is still having some diarrhea (though not near as much). I noticed you said it took 6 months for your son. Did you notice differences slowly, or did it just change around then? I am concerned since she will go a few days, or even almost a week fine, and then get diarrhea again. I want to make sure it is just her body healing, and not hidden gluten!

Michelle

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michele,

It was definitely gradual. He would have a formed stool & we would be so excited and then a couple a days later it would be loose again but it never would the persistant diarrhea he had before he was on a gluten-free diet. Looking at him today it is still amazing to me how sick he was. I know it's hard, but it does get better. Michael's started nursery school this fall & I was so afraid he would be upset when he had a different snack than the others or he would feel sad at birthday parties when he couldnt have what everyone else was having, but he is so amazing. It doesnt even phase him. He just knows that eating gluten makes him sick & doesnt even question it. He amazes me everyday!! If you ever have any questions or just need to vent my email is desarno4@optonline.net.

Good Luck,

Tracey

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My children were never officially diagnosed with failure to thrive, but they are all small for their ages. My daughter was borderline failure to thrive at 12 months, but since her height, weight and head circumference were okay, they just figure she was just a petite girl. We now know it was celiac disease. My children went gluten and diary free in mid-March. I measured them at 1 month gluten-free in mid-April (on my daughters 5th birthday) and now that my son is having a birthday I measured them again. They have all grown over 1/2 inch in a month and a half!! I was so excited. My middle boy who has always been at least an inch below where the other two kids were at his age grew almost 3/4 of an inch! He is so tiny for his age. The kids in his class lovingly call him "the short guy". (If you knew how much they all love him, you would know they are not being mean. :) And what he lacks in height he makes up for in personality!) He is the shortest in his class, but maybe not for long. I am looking forward to the next GI doctor's appt. for them so he can see how much they are all doing on their growth.

God bless,

Mariann

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I've never been extremely underweight to the point where it's dangerous or anything, but I have always been thinner than I would have liked to have been. I also was not diagnosed that early in childhood (at 13 years old I was diagnosed...). However, I do have some encouragement to offer. First off, it is common not to gain any weight when starting the gluten-free diet, but as the villi heal, more and more nutrients will be absorbed, and therefore, more weight will be gained. Second, if symptoms retrogress, don't panic...symptoms will likely, at some point, get worse before they get better. Although it can take months to put on a great amount of weight, it should be easier with a younger person who has had less damage to their intestines. I believe I've had celiac disease for six years w/o knowing (that's how long I had symptoms before being diagnosed). And I've already gone from 5'0" and about 70-73 pounds to 5'1" and 79-80 pounds.....and maintaining. Pre-gluten-free diet I gained 1-2 pounds a year...and here I've gained 7-10 pounds in a four months and a day. I have a ways to go, but 10 pounds is a good start...especially for being a thin person to begin with. :) I realize that my story doesn't really help, but if you hear enough success stories, you'll see that it can be done.

The key is patience....all good things take time....

-celiac3270

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Hi, my name is Heather and my daughter also has celiac disease. She was diagnosed the first week in February this year, and she was about 22 months. Back in December of 03, she began to vomit almost on a regular basis. For three weeks, we took her to the doctor (each week) and we were told that she just had a 'stomach virus'. Mind you, all along from about 9 months I noticed her to have an unusual amount of loose, watery stools, and everyone noticed how skinny she was with the exception of her 'pregnant' looking belly. On January 27th of this year, we decided to take her to the ER as she was not keeping anything down at all. About two hours after the first ER doctor saw her, she became dehydrated and they started her IV. That was the beginning of a month long stay at a Children's Hospital. She went in being 24 lbs (she had lost two the week before), and by week two was down to 17 lbs. Remember, she was two months shy of being two years old!!! That was the biggest nightmare of our lives. She was having recurring intussusceptions in her small intestine. During her second emergency surgery, the doctors did the endoscopic procedure/biopsy of her intestine, and diagnosed her with Celiac. She had to have a PICC line put in her arm to feed her, a blood transfusion, and many more procedures. She started on the gluten free diet on the third week and immediately began to thrive. She went from 20 lbs leaving the hospital all the way up to 28 lbs in less than three weeks at home. She began to fill in her arms and legs which had been so bony and frail looking before. Her belly become soft and squishy rather than hard and very large. Her surgeon even said that the thickness and firmness of her intestine had already increased from the time of the first surgery to that of the third. She is doing so well now, and is actually being a normal two year old now. (including going through the 'terrible twos') I hope what I have told you will help ease your mind. I'm still new at this whole new lifestyle, but my daughter is finally healthy so I am relieved more than anything. Another great thing is that she was sick all the time before she went on the diet, having asthma that required daily breathing treatments, and one ear infection after another. I am happy to report that she has not had a single ear infection, cold, or needed another breathing treatment since we left the hospital, just one week after becoming Gluten Free!!! Good luck!! :D

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I just broke 80 pounds last night! I had been close for the past two weeks, 79.0, 79.4, etc., but I hit 80 for the first time....YAY!!! Next goal is 85, then 90.....hooray! :D:D:D I'm happy, today!

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