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Feeling Discouraged
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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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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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