So Confused

[Worried mommy]

My DD is 8 and had an endoscope and blood work done 4 months ago that came back negative. Dr said to try gluten-free for a month and see what happens. Well she has been on it for 4 months and is much better no more diarrhea, stomach pains and even her eczema is better.  We were at a birthday party last weekend am they served pizza and cupcakes. My daughter knew she couldn't have any of the food served there and packed her own snacks like she usually does. Well after seeing all her friends eating that stuff she whispers to me can I have some. i explained to her that it is her body and she would be the one in pain if she had a reaction and she was willing to go for it. up until that day she has not had anything with gluten and I honestly always wondered what would happen if she did eat it so I know what kind of reaction she would have after being gluten-free for 4 months (not that I wanted my DD to have a reaction I needed her to learn that if you eat something with gluten you will get a reaction). As she ate 2 pieces of pizza and half a cupcake I was preparing myself for a long night and possible no school the next day. 

 

Hours passed and even days NOTHING happened. I don't know what to think or what to say. She has had a few things hear and there I wont let her dive into the Gluten full blast because I am afraid of what will happen.

 

Has this ever happen to anyone out there. I am having a hard time understanding if she just has a gluten sensitivity or intolerance or none at all. Any input would be greatly appreciated. 

[stanleymonkey]

The first few times my daughter accidentally had gluten she had no visible reaction, but that doesn't mean damage isn't being done inside. Now even a tiny bit renders her useless for a week. Unfortunately celiac testing in kids is not always reliable, my daughters bloodwork was negative but she is so I'll from gluten that the GI said it could kill her. Celiac or not, gluten makes her I'll, we won't let her have intentionally. We explained that it hurts inside, and if she can feel it that means it has done lots of damage.

You are going to have to be strong when she wants some gluten. We were lucky both our kids were taken off gluten when they were very young so they don't know any different.

It might be helpful to have some gluten free cupcakes etc in the freezer to defrost and take to parties. We ask people what they plan on serving and try and get something very similar. It will get easier, food is only a tiny part of life, and she'll adjust, just stand firm on the no gluten rule. it may seem mean at first, but in the long run she'll get used to it, and it will be just be part of life.

So many people on here have been there, and I'm sure can offer more strategies to help you and your daughter

[JoshKelly]

I went off my gluten free diet for a month to get an endoscope and I didn't start experiencing symptoms until the last 5 days of that month. I know it would be great to let your daughter eat gluten but I wouldn't take 1 or even a few days as a sign of her not having celiac disease

[Takala]

Well she has been on it for 4 months and is much better no more diarrhea, stomach pains and even her eczema is better.

 

So, keep up the good work and send her next time with her own gluten-free personal pizza and cupcake.  A lot of people make these in batches, or at least keep pizza crusts in the pantry supply, and freeze them for when needed. 

 

Individuals vary on how may hits they need before they become sick from eating gluten. Even diagnosed celiacs will sometimes be able to cheat and think that because they didn't get really sick, nothing much was going on.  Wrong. Even though I'm "only" gluten intolerant,  I have gotten a lot more sensitive over time, and really don't want to cause any more damage at this point, I'm screwed up enough.  Just my eating out now sometimes at a place which is very good about gluten free, will give me subtle symptoms sometimes over the next 48 hours, I will be just a little bit "off."  This is my body reacting to cross contamination that others won't notice,  and it will, over time, set off a big auto immune flare if I am not careful.  If I had only known when I was younger, I could have had a much different sort of adult life. 

[mushroom]

"If I had only known when I was younger, I could have had a much different sort of adult life." 

 

The celiac's version of the lament, If I had known I was gonna live this long, I would have taken better care of myself.

[Worried mommy]

Another thing is she has lost 5  pounds since starting gluten-free. Don't know what to think about that, I just don't want to her loose any more.  When I mentioned it to her per he made a comment that he should go gluten-free to loose weight. I don't know if I should worry about it or just see if she looses any more. Since on gluten-free she eats less then what she used to before. 

[stanleymonkey]

It might take her a while to get used to the different textures and tastes. Gluten can be a bit like an opiate, so the food she is getting is not what her body wants hence the low appetite. Our eldest hardly ate for a while, now I can't keep her full! If you are really worried about her weight here are some suggestions our dietician gave us.

Switch back to whole milk, not skim for a month or so

Fry things

Add butter and cheese and dips wherever possible.

Avocados

Tahini

Smoothies made with ice cream

Also when first going gluten free some people get constipated. Maybe she is a little backed up, that definitely kills an appetite.

[nikky]

Not everyone with coeliac will get a noticeable reaction when they eat gluten, but the damage is still done inside, at first i had no reaction, I was diagnosed after recurring aneamia. At the time I also had a negative scope, but now if i eat the slightest trace I feel as though i have a severe flu and my lips and tongue swell up. Reactions can get more severe with each dose of gluten, so its important to keep her off it, she'll thank you for it when she's older and understands more. 

 

One reason she may eat less is that when she was eating gluten, her body may have been struggling to absorb what it needed which triggered her to feel more hungry and therefore eat more but now that shes not eating the gluten, her body can begin to heal which will allow her to absorb what she needs more easily. The first few months I was gluten free my weight dropped substantially but over time my appetite picked up and I put the weight back on,

 

If she keeps loosing weight it might be helpful to look into other intolerances, especially dairy, many people with coeliac disease find lactose hard to digest during the first few months/ year due to the damage in the intestine. Over time the majority find they can slowly re-introduce the lactose once they've healed.