Almost 4 year old with symptoms even after being on a gluten free diet

[AKDad]

I'll try to keep this short. My daughter has always been in the lower percentile on weight since she was about 1 years old. She was born a healthy size but the first week we had her, we had to return to the hospital and have her stay under some UV lights because of Jaundice.

She's always been a picky eater, and she always wants to drink something instead of eat. I started to take notice of her stool. Even as a baby her stool was always a light color, almost off-white or pale yellow. It was runny that way, or even perfectly formed it was pale and yellow. My wife didn't really see anything to be concerned about. When she turned three and she continued to be lower on the weight chart, and her stool consistently was this weird pale color, I basically convinced my wife to get a blood test done. Also, our child's behavior was incredibly bad. She had mood swings, tantrums, uncontrollable crying for no reason. It was hell. After the test, she tested TTG IGA over 100, which was almost a confirmation of Celiac. Relief, we finally figured out the issue. We quickly switched her to a gluten free diet and she started to see minimal improvements, then sometimes she would have a normal stool (brown, healthy) and she seemed better, but then as if for no reason she would go right back to having weird mood and her stool went back to being yellow and pale.

She's almost 4 years old now and she's been "Gluten free" since October of 2017. She's had maybe a week of improvement but she continues to have symptoms of pale stool, gas, irritability, poor sleep, attitude, tantrums, bad behavior etc. She never once complains that her tummy hurts, but she still doesn't like to eat. We monitor what food we give her, but I'm starting to worry that there is something else going on. She doesn't have jaundice, it's very clear that she doesn't. Her eyes are bright white and her skin is normal, her urine is clear to yellow. She has tons of energy and is happy for the most part, but she is prone to wild mood swings and is very defiant. She is also very smart and learns very quickly, but something is gnawing at the back of my head that something is very wrong with her and I can't sleep well at night.

Basically I just want to know if there are any other people out there that suffer with this or have a child with this that see this kind of "relapse" in symptoms even after going gluten free. We even eliminated dairy in fear that it was also causing issues and she continues to have problems. We make her food every day and avoid cross contamination and it doesn't seem to make a difference.

 

Maybe it's the products we're feeding her? The gluten free bread or Vans waffles? Maple syrup? Peanut butter?

[tessa25]

You could get a Nima sensor and go nuts testing the food she typically eats. It's possible she's getting cross contamination even though you think you're being super careful. Or maybe she's getting gluten at a friends house. If your house isn't 100% gluten-free there could still be a problem there that you that you missed. It's  got to be hard to know if you're being careful without instant feedback.

 

Good luck and welcome to the forum.

[Maddiecl]

Hello, I am so sorry to hear that your daughter is feeling unwell.  I'm new the Celiac diagnosis myself, I was diagnosed in November of 2017 at the age of 24.  I know I'm quite a bit older then your daughter but I can relate to many of her symptoms and the "rollercoaster" of a healing process she has had.  I too am not feeling as well as I hoped I would at 5.5 months gluten-free.  I also experience days and weeks of feeling fairly good and having fairly normal BM's and then go back to being sick for no apparent reason.   Last week I had a repeat Endoscopy and Colonoscopy to put my mind at ease since I had met my deductible.  Everything came back normal and my villi looked a lot better but not healed.  I was reassured that after all of the tests I have had there was nothing going on with my GI track other than lingering symptoms of the celiac disease and I needed to be patient with the healing process.  It is incredibly hard to be patient when the healing process is this slow and painful.  I just wanted to tell you this story so you know this process really can be long and miserable and maybe (hopefully) that is the only reason your daughter is still so unwell. The fact that she is now having SOME brown healthy looking BM's now is a good sign!

[AKDad]

Thanks for the replies. We are taking her into her 4 year appointment soon and having the blood test done again and having a full blood panel to check lived, pancreas etc just to be sure. I hope all it is, is just the fact that she's getting cross contamination and not something worse. I'm a huge worry wart.

 

I'll update when I can.

[ravenwoodglass]

Welcome to the board. Healing can be a slow process and hopefully that is all that is going on.  Do be sure to read the 'Newbie 101' thread at the top of the Coping page. It has a lot of good info to make sure you are doing all you can to keep her safe. Are you giving her gluten free oats? If you are using products with them stop for now. Wait until she is symptom free before reintroducing them. Some celiacs react to oats the same as they do to gluten. It is also a good idea to hold off on foods with soy as that is another item we can have issues with for a while.

I hope she recovers soon but it can take some time. Make sure the rest of the family gets tested for celiac as well. It is not uncommon for other family members to need the diet even if they don't seem to have obvious symptoms.

[gluten-free Survivor]

Hi,

It sounds to me that your daughter may have other food allergies or there is cross contamination occurring somehow not matter how careful you are.

Cross contamination can occur in the field that the crops are planted and not necessarily the processing facilities. For that reason,  I  have opted to go grain free.

Lactose Intolerance is also a symptom of Celiac disease so removing dairy products from her diet was a great thing. Also be very careful of those Gluten-free process foods since they contain ingredients that does not go well with everyone who has Celiac disease.

Corn can also cause problems and make sure you use grass fed beef and cage free eggs!

A food allergy test is a great idea because it would tell of other foods that may be causing the immune system to react negativity.The good news is that she is young and her recovery will be shorter than someone who 

P.S You show have her vitamins level checked for deficiencies as well! 

[Ennis-TX]

I would say go over the basics with teh 101 thread maybe you missed something, there is a huge learning curve with this disease. Is the toaster 100% gluten free? Is the House gluten free? Did someone spread peanut butter on gluten bread then dip the knife back in the jar?
https://www.celiac.com/forums/topic/91878-newbie-info-101/
We do suggest a whole foods only diet, honestly most gluten free foods...are starchy/sugar nightmares of compromise to simulate gluten products. I personally have to go with grain free and starch free versions for a other disease that developed as a complication. This leads my gluten-free products to be healthier and less processed... check ingredients and try to keep processed gluten-free foods as treats not staples. Whole foods are best....OH I know when I do not feel well...I prefer blended meals...I really just prefer nut based porridge (Sweet with extracts and stevia, or savory like congee, High in fats and good way to put on weight) and mushy microwaved omelettes with nut milk, blended steamed veggies soaked gluten-free nut based breads, and nut flours/butters....Just seems to sit better then solids.