I need some opinions here please...

First some history....

My husbands sister was diagnosed with celiac in the late 70s. My 12 year old daughter was having stomach problems last year. We went to a pedi gastro. They were basically of no help. We had a celiac panel that had one number slightly above range and an endoscopy which showed an ulcer at the opening to her duodenum but nothing else. After several more weeks of stomach pain we put her on a gluten-free diet
and within 2 weeks her stomach pains went away. After she went gluten-free we had
a few slip ups. Each time she had severe reaction to the gluten (throwing up, diarehea, head aches and stomach pain). She was never formally diagnosed with
celiac

After being gluten-free for the better part of a year, she decided to eat chicken nuggets
at school (when I was not around). These were not heavily crusted but did have some coating on them. She didn't get sick from them. Then last week we goofed and she ate part of a flour taco shell from a taco salad and didn't get a reaction.

She now wants to eat gluten.

I know that you don't always have stomach issues with celiac....and that if she
truly has celiac she should never have gluten again whether she has stomach pain or not.

Question....

Have any of you had stomach (intestinal) pain when you (with a confirmed diagnosis of celiac) slip up and then suddenly no longer have stomach pain when you slip up. I guess what I am wondering is...could she merely have had a gluten allergy that she has out grown or could this still be celiac, however it just doesn't cause stomach pain any longer?

thanks!

It could be either. It could have been somethind else going on at the time, it could be gluten intolerance, it could be celiac. On that alone, you can't tell. It's tricky when you don't have definitive diagnostics AND you don't seem to react to gluten in the diet. I probably would end up trying out gluten for a while (say, two weeks) then withdraw it again to see if there's any difference and if there wasn't, continue the gluten with yearly blood panels, but I am NOT suggesting that YOU do that. I'm leaving no suggestions because it's such a personal decision, and the ramifications for feeding her gluten if she is celiac are serious. (Of course, this exact same situation exists for all undiagnosed, asymptomatic celiacs.) Is it possible that the ulcer was the primary suspect in the symptoms?

Maybe finding a doctor well versed in celiac disease would help, but - on average - I would imagine that most celiacs would err on the side of caution, and those who aren't would err the other way. It's a tough place to be in. I hope you guys can find your answer!

Thanks,

For the first 8-9 months of being gluten free she did have severe reactions when she had a slip. Stomach aches, head aches,,,,really felt crummy for at least 2 days after eating it.

Her aunt (now deceased) used to eat gluten but in small amounts because she didn't have pain from it. I don't think the dr. (or she) realized at the time the other ramifications of eating small amounts.

My biggest fear is that my daughter does have celiac but just isn't reacting the same way that she used to with it and that if she does eat gluten now it's going
to cause big problems later.

I think the best bet is to find a dr. that actually knows something about this disease. That can be hard to do. Most I've talked with seem to continue to think it's rare and know so little about it.

Thanks for your help.

Tiki

Did your daughter hit puberty during the time she was gluten-free? Some people suddenly go asymptomatic when they hit puberty. I've never seen any studies as to whether there's actual damage going on during this time if they're eating gluten. Some can eat gluten for years with no obvious reaction, but many return to their previous celiac pronblems eventually.

richard

Richard has a very good, important, point! I had forgotten her age when responding - but the reduction in symptoms during adolescence is not uncommon, and needs to be considered as well.

Wow, I had never thought of that.

She started having strong symtoms when she was 11. I think it was because she
started intense training for soccer. This was towards the beginning of her adolecense....we're not quite thru it yet. I think she probably had mild symtoms
for years....just nothing bad enough to really worry about.

I've just found it strange that 4 months ago if she got a trace of gluten she was sick for 2 days and now it seems she can eat small amounts with no reaction.

That might be it.....also might explain some of the things with my husband.
I think he has it too. I'm still working on getting him tested. He was quite short in high school. He grew about 6 inches his senior year. Is that something that would
be common with this?? Celiac taking a rest for a few years???

I've read that people with celiac disease and gluten intolerance go through a cycle. For a while we become ever more sensitive to any trace of gluten then it starts to ease up. I'm not positive about the time frame for all, but for me and my kids it seems to be up to 6 months we were ultra sensitive. I'd get a migraine with half an hour after eating a crumb or less; my daughter would be so sick to her stomach she'd be vomiting. Now, at 9 months, I still get a headache, but not for an hour or so and it doesn't seem to become a migraine anymore. I'm so happy! My daughter no longer vomits, but she still has an upset stomach for a couple days.

How long has your daughter been off gluten? She could just be past this stage. The unfortunate thing is, she may be able to eat gluten without the intense reactions anymore, but she is doing damage to herself. My children only had borderline IgG results, but had such intense positive reactions to the diet and since my father also had celiac disease (as do I) that I won't let them even consider eating gluten again. If I can prevent them from having full celiacs, developing other autoimmune diseases, having brain/nerve damage, etc., I will be quite satisfied with our decision even if it is inconvenient (nice understatement, huh? ). Would you wait for a heart attack before controlling your cholestrol? (My father died from complications caused by untreated celiac disease.)

Were you ever tested? I think, considering the age of your daughter (and how stubborn teenagers naturally are...my eldest is 15 ) you might want to get yourself and her tested through Enterolabs. You would be able to see if the both of you have the gene and if you have asymptomatic celiac disease. Maybe by having family support, she would be more agreeable to staying on the diet.

She has been gluten-free since October 2003 with just a few slip ups.
If she would of had a firm diagnosis I wouldn't even consider thinking about
letting her eat gluten. I understand the damage that it can cause even
if she doesn't have symptoms. Basically I diagnosed my daughter
so I guess it had me ( and her) doubting just a little bit.

Celiac runs on my husbands side. His sister had a diagnoses in the 70s.
I think he has it too. He had a lot of the same health history that my daughter
has....threw up a lot as a baby. He had diarehea...she had constipation. He's had
elevated liver count....and has not felt good for about the last 18 years!!!!!
We have a enterolab test sitting at home for him to take. It arrived last week.
Hopefully he will take it soon and we will have some answers on him.

I should probably have her gene tested too.

thanks!