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Ate Gluten And....nothing Happened? Totally Confused
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My daughter was diagnosed at 20 mos old. It's a long story but the short version is that she was diagnosed based off a negative blood test, inconclusive biopsy, and a very high risk genetic testing result along with her miraculous results going gluten-free. From the time she was born she had food intolerances to almost everything, horrific diaper rashes, distended belly, constant hunger, was not growing, and was just generally a miserable child. She was only 15 lbs at 2 yrs old (was 16 lbs at 6 mos old) and after being gluten-free for 6 weeks she was 20 lbs. Her acid reflux went away as did the distended belly, the constant hunger, the misery, and all the food intolerances. Then we also found out my hubby has celiacs disease as well.

So anyways long story longer, she's now 5 yrs old and yesterday was the first time since 20 mos old that she received anything more than contamination. We were at Cold Stone Creamery, where we've gone successfully before, and I stupidly let her get the cake batter ice cream. I was positive I had looked it up before and had been surprised it was a safe flavor so I didn't even ask. I really don't know what the heck I was thinking. Anyways they knew she was gluten-free because they know to mix it in a different container and not on the stone. After she had been eating for awhile they came running out and told us that flavor has gluten in it. I looked it up and yeah, it's def gluten with wheat flour.

So far nothing has happened? She ate at least 10 spoonfuls of it. I'm so confused. In the past when I was pretty sure she ate something contaminated she was in the bathroom before we could even leave (I think they took the bun off her patty but did not re-make it like they should have - of course I have no proof).

How could she eat that ice cream and have nothing happen? I know reactions can be delayed but this seems kind of crazy. She's running around & totally happy and fine. No side effects whatsoever.

Thoughts??

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My guess (this is entirely a guess) is that she doesn't have the same damage and irritation in her gut as before so the reaction was not as strong (or noticeable).

Another guess is that the way she reacts has changed over the years and you haven't recognized the reaction for what it is. It could bother her skin, give her mouth sores, a headache, make her a bit tired... any number of things. It is quite common for the reaction to vary in it's presentation; just think of people who did not recognize their celiac symptoms for what they were until the stomach aches started and their symptoms resolved on the gluten-free diet... It's a possibility.

Or she got very lucky! :)

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I know a lady that was diagnosed with Celiacs as a child that stopped showing symptoms when she was about 5. Her family thought she had out grown it somehow and let her eat gluten from that point on. Later when she was 19, she started having intestinal bleeding because her lining was destroyed by the gluten all of those years, even though she did not show signs. I have read that in children the signs might go in remission for years, but reappear in their teens, just like in this woman. Perhaps that is why your daughter did not react. Children seem to be even harder to read with Celiacs and sensitivity....in their test results, their reactions...everything.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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