Newly Diagnosed 16Yr Old

[Katie H]

Hello

I'm 16 years old and I was diagnosed with Celiac Disease about 2 months ago now. My symptoms started about 3-4 years ago but I just assumed I was lactose intolerant. So, I took lactaid pills whenever I had any dairy. It seemed like the pills helped, but I still was uncomfortable. I think my symptoms have just gotten worse (or I've just gotten tired of being in pain all the time) so I decided I should see a doctor. And sure enough, the Celiac Disease blood tests were positive. I'm getting a lactose intolerance test in a few months after I get some time to heal. Pretty sure I didn't have any other malnutrition problems. I'm a healthy weight (pretty much perfectly average, BMI of 21). My Mom has basically become obsessed with making sure my foods are safe, which is making it much easier to avoid gluten. But of course, I've still made several mistakes and have accidentally eaten stuff with gluten in it. I'm still learning and researching almost everything I eat. I've even been good and changed toothpastes since the one I was using could possibly have gluten in it. Other than going gluten free, I haven't really changed anything else about my diet- I still have dairy with lactaid pills, corn, soy, beans, fruit, and vegetables.

I've still been very uncomfortable though. I don't feel all that different from going gluten free. Maybe I just feel less depressed, that's all. I haven't really had a good #2 for probably over a year now. Because of this, I went to see another doctor who put me on a mild (gluten free) laxative to get things moving better. She said I was just constipated and I needed to get on a more normal schedule of going to the bathroom. She also said that I would be pretty uncomfortable for a while on the medication, but the pharmacist said I shouldn't feel bad at all so I didn't really know who to believe. The laxative does seem to help me go at least, but I still have terrible gas pains sometimes. Basically all it's helped with is allowing me to go when I feel that I need to. But yet, I feel better after I go only for a little while and then the pain starts again. I just always feel like I have to go plus I have a gassy stomach and it's pretty noisy and gurgly all the time. During school it's just the worst since I can't always be in the bathroom (it's also rather embarrassing so sometimes I just hold it all day). Sitting down in class seems to make the cramps and gurgles worse. The pain is mostly in the lower part of my abdomen, but just the whole general center of my abdomen feels like there's so much pressure on it. Occasionally I have diarrhea or loose stool (like this morning), but usually my bowel movements are relatively normal. I've cut back on the laxatives since she said to when I felt like things were moving better. I have to stay on them for 3 months.

I don't really know what my symptoms were from Celiac Disease since I never really had much time to be completely gluten free. I feel anxious sometimes when I'm home, like I can't relax. I also don't sleep nearly as much as my friends do. I don't know if this is a symptom, but they can all sleep for 8-10 hours. I can only ever sleep for 8 and then I wake up. Usually, I have to force myself to stay in bed but I just feel like there are so many things I'd rather be doing so I get up. I haven't really slept well for years now and I have terrible dark circles under my eyes.

Maybe I'm just super sensitive to gluten? I can't go to Dunkin' Donuts even for a simple coffee without feeling sick. Every time we go to a restaurant I always feel sort of nauseous and have diarrhea the next day, even though I'm very careful to order gluten free things. I just realized something too- I wear a retainer sometimes at night since I used to have braces. Maybe I don't clean it well enough from when I used to eat gluten foods? I probably wear it 3-4 times a week.

So what I'm wondering is if it's the laxative that's making me feel sick sometimes or if it's some other food I'm eating. My issues vary so much- for example, the other day my stomach hurt alot during the day (midmorning-lunchtime is when it usually starts, even before I eat) and I didn't go to the bathroom all day. Around 3, I went home and went to the bathroom. I felt much better then. But then at nighttime, the gurgliness came back and and gas pains.

Help!

[dilettantesteph]

My 16 year old daughter was just diagnosed. I am super sensitive and it took me several years to figure it all out. I thought that the super sensitivity had developed gradually. My daughter seems to be super sensitive right from the start. Maybe I was too, but I didn't know enough about it to be able to avoid the things I needed to avoid so I was just sick a lot. There is also an adjustment and healing period so it is hard to tell what is going on. My daughter does feel much better if she eats a diet of just meat and produce. What about cc in the kitchen? Is there a separate area for gluten free foods? We needed a gluten free household. I hope you feel better soon.

[Katie H]

My 16 year old daughter was just diagnosed. I am super sensitive and it took me several years to figure it all out. I thought that the super sensitivity had developed gradually. My daughter seems to be super sensitive right from the start. Maybe I was too, but I didn't know enough about it to be able to avoid the things I needed to avoid so I was just sick a lot. There is also an adjustment and healing period so it is hard to tell what is going on. My daughter does feel much better if she eats a diet of just meat and produce. What about cc in the kitchen? Is there a separate area for gluten free foods? We needed a gluten free household. I hope you feel better soon.

No, we don't have a gluten free counter or anything. We do keep my gluten free food separate from all the other food in the house but it's not like it helps that much since it's all packaged. I probably do need to just be more careful about putting stuff on the counter. That could be my problem. I'm going to try going without soy for a little while and see if I feel any better. Thank you for your reply.

[GFinDC]

Hi Katie,

I agree you should cut out soy. Also cutting out dairy would be a good idea. Celiac damages the villi lining the small intestine. Those villi produce lactase, the enzyme our bodies use to digest lactose sugar in milk. So it is not unusual for celiacs to be lactose intolerant. Until you are healed it would be better to avoid anything that can irritate your gut, including dairy.

Some of us also react to casein, one of the proteins in milk so it is simpler to avoid it completely for a whole.

Another thing is to avoid sugar. Sugar feeds the bacteria in your gut and can cause them to multiply rapidly. That can cause gas and discomfort. SO cutting back or eliminating sugar can help.

You should also take a pro-biotic some times to help get the gut bacteria re-balanced with beneficial strains.

The gluten-free processed foods are ok for an occasional treat, but your diet should mainly be whole foods. Especially when starting out.

Eating out at restaraunts is always risky, even with a gluten-free menu. That doesn't mean you cant' do it, but check on this forum or search the web first to see if the place has a good reputation with celiacs. And then also talk to the manager before going if you can to ask about their gluten free foods.

gluten-free can be a very healthy diet if you go with whole foods.

[Katie H]

Hi Katie,

I agree you should cut out soy. Also cutting out dairy would be a good idea. Celiac damages the villi lining the small intestine. Those villi produce lactase, the enzyme our bodies use to digest lactose sugar in milk. So it is not unusual for celiacs to be lactose intolerant. Until you are healed it would be better to avoid anything that can irritate your gut, including dairy.

Some of us also react to casein, one of the proteins in milk so it is simpler to avoid it completely for a whole.

Another thing is to avoid sugar. Sugar feeds the bacteria in your gut and can cause them to multiply rapidly. That can cause gas and discomfort. SO cutting back or eliminating sugar can help.

You should also take a pro-biotic some times to help get the gut bacteria re-balanced with beneficial strains.

The gluten-free processed foods are ok for an occasional treat, but your diet should mainly be whole foods. Especially when starting out.

Eating out at restaraunts is always risky, even with a gluten-free menu. That doesn't mean you cant' do it, but check on this forum or search the web first to see if the place has a good reputation with celiacs. And then also talk to the manager before going if you can to ask about their gluten free foods.

gluten-free can be a very healthy diet if you go with whole foods.

So no dairy, soy, or sugar. I think I can do it. Have you heard of Kefir? It's a yogurt type drink that I get sometimes and it has probiotics in it. Is that okay to drink? It says it's 99% lactose free. What other probiotic's are there? I also really like yogurt like chobani or stonyfield. Should I give that up for a while? And when you say whole foods that means vegetables, fruits, meat, rice, ect? Does the sugar in fruit count as the sugar you're referring to?

Sorry for the questions. I'm trying to slim down a little bit too so maybe this will be good for me.

[GFinDC]

So no dairy, soy, or sugar. I think I can do it. Have you heard of Kefir? It's a yogurt type drink that I get sometimes and it has probiotics in it. Is that okay to drink? It says it's 99% lactose free. What other probiotic's are there? I also really like yogurt like chobani or stonyfield. Should I give that up for a while? And when you say whole foods that means vegetables, fruits, meat, rice, ect? Does the sugar in fruit count as the sugar you're referring to?

Sorry for the questions. I'm trying to slim down a little bit too so maybe this will be good for me.

Some times people get hungreyier after going gluten-free. Once you are gluten-free your body can start repairng the damage to your intestines and that takes extra fuel and nutrients. You should get some B-12 and B multi vitmains to take, along with some Vitamin D and a cal/mag combo.

Once you are healed up you may find yourself eating less because you are actually absorbing the food and nutrients you need. I used to eat a lot more than I do now. But I don't get hungry as my body isn't telling me to eat eat eat to try and get enough vitamins and minerals. So I now eat less than before going gluten-free. I have been on the gluten-free diet over 3 years now and that change happened in the first 6 - 8 months.

[Katie H]

Some times people get hungreyier after going gluten-free. Once you are gluten-free your body can start repairng the damage to your intestines and that takes extra fuel and nutrients. You should get some B-12 and B multi vitmains to take, along with some Vitamin D and a cal/mag combo.

Once you are healed up you may find yourself eating less because you are actually absorbing the food and nutrients you need. I used to eat a lot more than I do now. But I don't get hungry as my body isn't telling me to eat eat eat to try and get enough vitamins and minerals. So I now eat less than before going gluten-free. I have been on the gluten-free diet over 3 years now and that change happened in the first 6 - 8 months.

Oh that might explain why I feel hungry so often. I just started taking vitamins and taking soy completely out of my diet. I feel great! Soy free for a few days now and my stomach hasn't hurt at all. I haven't felt this good in a very long time. Thank you for your help!