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Old 06-07-2011, 05:25 PM   #1
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Question Is Celiac dormant until triggered?

My daughter was 11 when diagnosed with celiac disease (blood test and biopsy of small intestine)after experiencing stomach aches at night before bed. She stayed on the diet religiously for one whole year with no let up of the stomache aches. We have since found the culprit of the stomache aches is separation anxiety when it is bedtime. She has been off the diet for about a year now with absolutely no symptoms when ingesting gluten. I have had every vitamin and mineral level checked that I possibly can and it all comes back perfect. She is gaining weight and growing and is definitely NOT malnourished. I read recently (Mayo clinic study)that " Many times, for reasons that are unclear, the disease emerges after some form of trauma - an infection, physical injury, stress of pregnancy, severe stress or surgery". Is it possible that the celiac is showing up in her blood tests because it is there but she doesn't have any ill effects from it because it isn't triggered yet? It id extremely frustrating trying to keep a 12 year old from eating gluten when she can't see or feel why she can't have it!

 
Old 06-13-2011, 08:38 PM   #2
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Re: Is Celiac dormant until triggered?

This is really tricky. All doctors and dietitians would recommend a gluten free diet for someone with Celiac Disease. My dietitian said 'even if you don't feel sick from eating gluten it's still doing damage'. If her biopsy showed damage, then damage is occurring. Some people have no symptoms and still have damage.

My uncle (who is a urologist and has Celiac Disease) said 'if you don't feel a lot better, you're not under weight and you have no deficiencies then you can make the call'. That was his advice to my Mum and I (we both have CD).

I have read that those with Celiac Disease who are not on a gluten free diet run the risk of other health problems, such as other autoimmune diseases, osteoporosis and bowel cancer. But like I said to my dietitian, I could get hit by a bus and die tomorrow! (touch wood) and she agreed, it's a personal call.

For me, I had low B12 and foliate, normal weight and had the odd stomach ache and bowel movement before going gluten free/being diagnosed. Because of my deficiencies, that was enough to keep me on a gluten free diet. I also feel like I have more energy and probably eat healthier too.

But if I was in your daughter's shoes, I don't know what I would do. It's tricky. I guess you need to weigh up the risk of eating gluten and possibly having these future health problems, or going on a gluten free diet when you're not seeing any benefits.

Maybe she needs to have another biopsy? If she's been eating gluten for the past year the biopsy will give you an accurate measure of damage.

Good luck.

 
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Old 06-14-2011, 07:56 PM   #3
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Re: Is Celiac dormant until triggered?

Thanks so much for your reply! I guess I've come to the conclusion that I don;t want to fight with her anymore over what she's eating?!? I will continue to keep up on her bloodwork and all her vitamin / mineral levels that I can. She was on the diet for a whole year, following the hopital's celiac info to a T and there was not the least bit of change in her at all. Until she has symptoms that motivate her to start eating gluten free she will continue to fight me on it. By then she may be older and more mature to make a calculated decision on her own to start the diet. She was diagnosed at age 10 and its a tough age! If she was younger, I could have just incorporated it into her diet and she would have never known the difference and grew up eating gluten free. If she were older (closer to 20) she would (hopefully) be mature enough and concerned enough of her well being to know that she has to do what's best for her. One good thing has become of this though. My daughter did a public speaking essay on Celiac and she was so nervous she almost didn't do it in front of the audience (she was just going to do it in front of the judges), but changed her mind at the last second and ended up doing it in front of everyone. A parent came up to me afterwards asking me more about the celiac b/c her daughter was getting violently ill for days after eating some things and couldn't figure out what was causing it. After hearing my daughters speech she took her off gluten. I ran into her at our daughters basketball game 8 days later and she told me that her daughter had done a complete 180. she had gained 4 lbs (this girl was 12 and looked like she was 8 or 9) and felt the best she had in a long time. I ran into her 3 mos later and found out she tested negative for celiac (thru bloodwork but never had biopsy) but she was still on the diet. The mom put half cup of yogurt in an 8 cup smoothie and the daughter almost instantly became so ill it lasted for 3 days. There was wheat protein in the yogurt. The mom says that her and her daughter pray for my daughter and I when they say their prayers at night b/c she believes my daughter saved her life. And to think she almost didn't do her speech in front of everyone!

 
Old 06-14-2011, 11:44 PM   #4
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Re: Is Celiac dormant until triggered?

Wow, well done to your daughter =] she should be proud of herself!

You're right, I was diagnosed at 17 (I'm now 21). I wished I'd been diagnosed when I was 3-4 years old, that way I wouldn't know any different. It's so hard when you know what cheeseburgers/donuts/etc taste like, but you can't have them! A lady I use to work with, her daughter was diagnosed at 18 months so she's never had any of those yummy foods.

When I was first diagnosed I still ate gluten for 6 months, but I started to have symptoms so I decided I better do the right thing and eat gluten free. I feel a lot better for it.

It's going to be difficult if your daughter doesn't want to eat gluten free. I guess you need to let her know the risks and then let her decide.

Good luck =]

 
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