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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.

Feeling Discouraged
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11 posts in this topic

My 2 yr old dd has been gluten-free for 9 days now and is still having the same ole diarrhea. I am certain she hasn't gotten anything with gluten with it. It is just discouraging, with the diet being so difficult (we are doing no dairy as well) and still not seeing improvement. On top of that, she is not eating as much as she used to. She even started refusing her vitamins. Yesterday the only thing she really ate was some fruit at lunch and then some french fries at dinner and then 2 gluten free waffles with gluten free/dairy free margarine for a snack.

How long did it take your kids to get better? I have heard stories that little ones have had improvement in days.

Mel

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Fruit and oily french fries will only exaserbate diarrhea. The gluten-free waffles are a good start, but she really needs rice. She also needs time, since the damage to her intestines could have been severe. The BRAT diet is what I have always used for diarrhea: bananas, rice, applesauce, and gluten-free toast with no toppings. It sounds bland and boring, but it might help.

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Hi Mel, I know how frustrating it is to have to limit the diet so drastically and not see the improvement. I too had heard stories of improvement in days, and when I didn't see it, I was very frustrated! It took about 2 weeks to see any real improment in my 4-1/2 yr old, but then it was amazing! The diarrhea slowed down, though it continued fairly regularly until about 6 weeks gluten-free. She did start getting a bigger appetite then she had had in her life though! She also started acting healthier, she wanted to play more, and felt better. I know it is hard, but keep it up and you will see results. Also keep an eye out for anything that could be causing cross contamination just to be safe!

Michelle

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I just remembered, we also upped the pediasure Ashlee was drinking so that we knew she was getting what she needed until the appetite returned. I'm sure it helped her, and it was a big relief to us since she was still not eating much!

Michelle

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Hi. Don't be too discouraged yet. My little girl will be two in ten days and was diagnosed about two months ago. It took a good three weeks before her diarhea started to improve. Also, she gained about a pound the first month, but because she was feeling so much better and was so much more active, she lost a half pound afterwards. The point is, my VERY limited experience with celiac has taught me that this is not a straight path to recovery and it does take time. :rolleyes:

Take care and good luck,

Maya

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I join with the others in their encouragement.

Also, I'm sure you've double checked everything - but just in case, and since it can be so very easy to forget to check the one thing you use the most routinely - did you make sure the vitamins are gluten free? I was really shocked the first time we had a gluten accident with our son due to a regular medication we had used previously and didn't even think of checking (and, gluten wasn't even mentioned on the list of ingredients. It was only when we called the manufacturer to be sure it *couldn't* be that product that had caused such an incredibly severe reaction that we were told it did in fact contain a small amount of gluten - not enough to be required to be written on the label, I guess, but that's another topic!). As the body starts to get used to being gluten free - if this has been the problem, of course - then often smaller and smaller amounts can have an effect.

The other thing to verify would be the fries, if they're store bought ...

Best,

Kaylee

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Thanks for the replies.. I'm glad to hear that other kids have taken a while longer to recover. I have been very very *very* careful about cross-contamination. Her vitamins say "gluten free" on the bottle, so I'm fairly certain they are safe. I am going to work on feeding her more rice and waffles and bananas and applesauce.. I have decided to cut out most of the juice for now too. The french fries were from mcdonalds (i know i know.. this is the first time we had eaten out except for once to outback and then she refused everything we gave her.. i was so excited to actually go out to eat and get gluten-free food but of course she wouldn't even try a bite!).. i talked to the manager at mcd's she said their fries have a dedicated fryer, and I went inside and watched them make them. i don't think they fries are the problem only because that is the first time she has had them since going gluten-free. all of the things i have given her, i have either called the company or looked online to make sure they are gluten free, and we are eating for little variety right now anyway (lots of fresh meat, fruits, some veggies, eggs, rice, gluten-free organic cereal, gluten-free rice milk, and some gluten-free cookies for dessert occasionally). my pots are stainless steel and i clean them very well, and have been using only silverware for cooking instead of my wooden spoons, which i am sure are contaminated. i have been putting foil on the pans for the oven, b/c I'm not sure if they are safe. i even quit usinga shampoo that i love b/c it has wheat in it! i don't know what else I could be doing, besides cutting out the juice (she only has 1 cup of OJ in the morning and occasionally a glass of juicy juice in the afternoon), and try to feed her bulky foods. her poops are not really watery, just frequent, loose, sometimes greasy, sometimes mucusy. she has had some stomach cramps here and there. i guess i should just give it more time. we are travelling 1200 miles away in june to visit family for a month, and i was hoping her bowel movements would be improved by that time, but it is only a couple of weeks away. she seems to have plenty of energy, and seems very happy. i don't think she has gained any weight yet. we will take her for a weight check at the end of the month.

thanks! :)

Mel

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Mel, I noticed you are giving her Orange juice. I had to cut oranges and orange juice from Ashlee's diet, they seemed to agrevate her stomach. Until the villi were repaired, I figured the acid is probably pretty hard on her little tummy. If she really needs fruit juice, I would try white grape juice or something.

good luck on the trip!

Michelle

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Michelle,

We ran out of OJ yesterday, so she didn't have her normal morning glass.. well this morning my husband said her poop was formed! (of course I missed it, because he was letting me sleep in).. I am going to keep the OJ outof her diet for a while and see if that helps. I'm normally not a big fan of fruit juice, and always water it down, etc. but I have just been so focused on feeding her extra calories before now, and fruit juice was an easy way to get it in her. I know that white grape juice is supposed to be the easiest on the tummy, so I might give her a little of that sometimes.

I know I shouldn't get too excited yet about the formed poop, but it is a little encouraging!

Mel

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Hey, be encouraged, Mel! Every little step in the right direction is progress, and she took a huge one!

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Hey, Ashlee calling out "Regular Poopies" is still music to my ears! She did have some formed, then more diarrhea and back and forth like that. Then I noticed she was having more and more formed stools. I thought it was strange how it changed back and forth like that. Good luck! It is so encouraging to see results!

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