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Glutened And No Symptoms

CeliacMom2008

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CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Our son has been gluten free since Dec. He was accidently glutened back in Apr/May by some popcorn salt and ended up with D about 4 days later, smelly gas, fatigue, irritability. All what we expected. Four weeks later his TTG levels were amazingly at 2.8 even with the glutening. Not exactly what we expected, but we were happy.

Fast forward to last weekend. We went out of town for a night and stayed at a hotel that is known for its ability to feed Celiacs. We had an wonderful dinner and great breakfast. At lunch they served our son a regular sandwich instead of a gluten-free version. He only had 1-2 bites before we figured it out. So we expected dramatic illness all week. All that happened though was 20 minutes of stomach cramps 4 days later (that could've been attributed to anything - he'd been swimming all afternoon and was hungry). He also had 1 extra bowel movement on two different days, but both were "normal" looking and pain free.

So what's up?? He's done wonderfully on the gluten-free diet. He's grown, he's not tired all the time and has much higher energy levels, he's not moody like before. We're total believers in gluten-free. But why didn't he get sick? And what the heck do I tell him if he starts to question like we are? So far he's just been thankful not to be sick. He was scared and very upset when it happened. He definitely remembers the severe D with the popcorn salt and the pain and loose stools from pre-diagnosis. But if his dad and I are questioning it, surely he will too eventually. I prayed he wouldn't get too sick, but now I am so confused as to why he didn't get sick at all...

Has this happened to anyone else. He was diagnosed by blood work (TTG of 100) and biopsy and his TTG was 2.8 in May after 6 months of very diligent work at being gluten-free. So I really think he has Celiac, but we are still very confused.

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Jestgar Rising Star
Jestgar
Posted

Many people find that after they've been gluten-free for a while they have varying responses to gluten. Sometimes it's a huge response, sometimes delayed for a week, sometimes small.

I would take this as a sign that you are doing a great job keeping him gluten-free, and you were fortunate enough to escape this one incident.

krisb Contributor
krisb
Posted

My 8 year old doesn't always react either and he starts questioning. He was never diagnosed by a biopsy but he is so healthy on gluten free. Once we all got glutened on accident and he was the only one without a belly ache right away. Your son was actually diagnosed by a biopsy so I would take that as a major confirmation.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted
  • Author
My 8 year old doesn't always react either

Well isn't that odd! I just assumed Celiacs would react the same way every time, except maybe with varying degrees of severity depending on how much gluten they actually got. Just when I think I've figured this disease out!

krisb Contributor
krisb
Posted

I have a friend who said her son didn't have any symptoms either when he cheated and she was worried he would cheat more because of it.

irish daveyboy Community Regular
irish daveyboy
Posted
Our son has been gluten free since Dec. He was accidently glutened back in Apr/May by some popcorn salt and ended up with D about 4 days later, smelly gas, fatigue, irritability.

Hi,

I'm fascinated that your son was 'Glutened' by Popcorn Salt (not that I eat a lot of popcorn).

I have to admit I've never heard of it before, is it common in the USA/Canada ???

.

Is there a particular type of salt used on popcorn? (ie. one that might use flour to prevent 'clumping')

.

I would have thought that plain salted popcorn was a safe bet! apparently not so.

.

I have heard about flavoured hot butter's and caramel, but never salt ??

has popcorn salt ever effected anyone else?

.

Best Regards,

David

krisb Contributor
krisb
Posted

Once I bought a popcorn salt that was flavored and it had gluten. It had a bunch of other garbage in it too so I don't buy stuff like that anyway. I'd rather melt my own butter and flavor it myself. You do find gluten in the wierdest places.

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CeliacMom2008 Enthusiast
CeliacMom2008
Posted
  • Author

It was a white cheddar flavored topping. I don't remember the name and the bottle is long since thrown away! It was purchased pre-diagnosis and he and a friend found it. He thought to ask, unfortunately it was after eating some. I checked their website and only two of their many flavors contained gluten - cheddar and jalapeno. The rest were fine. And their website was very helpful. It clearly stated that the product contained gluten. We just didn't get to check in time.

It was such a small amount, but he was so sick from it. That's why we were sure the sandwich bites were going to be just awful. It's been a week and half and aside from some mild intestinal issues, the one cramping episode, and a sore on the end of his tongue he's been fine. Not moody, not tired, not stuck in the bathroom.

Kibbie Contributor
Kibbie
Posted

My 3 year old has next to no reaction unless she eats a lot of gluten.... it took an entire bowl of regular macaroni and cheese for her to have a full blown reaction. We have been on the diet for nearly 2 years now.

My sister fed her some cereal that was full of gluten (2nd ingredient was wheat) she noticed after the 4th spoonful and we never saw a reaction at all... no gas, no stomach ache nothing. I count that as getting lucky that's all.... remember just because its not making him feel sick doesn't mean its not doing damage!

NewGFMom Contributor
NewGFMom
Posted

We had the same thing. My son and his sister found a year plus bag of goldfish crackers in the car (from pre-diagnosis). He's so used to being able to eat anything he finds because the house is gluten-free that they started eating them and giggling. I turned around and realized what was happening.. AACCKKK!!

But NOTHING happened. Usually he reacts just from biting his nails at a party with gluten, but three whole crackers and NADA.

I have no idea why. But I guess it just happens sometimes.

We're still a bit baffled.

Green Eyes Rookie
Green Eyes
Posted

These are the questions I've been asking!!! I went gluten free after diagnosis 4 weeks ago. Before diagnosis I had no noteable symptoms that I could attribute to celiac (they were there, but they could have been attributed to something else also). I have been gluten free for 4 weeks with only one reaction. I have watched my diet and I am pretty sure I haven't gotten anything I'm not suppose to have. BUT what if I'm just not reacting? Although I have taken all the precautions and check labels, etc. I worry that I'm not reacting.

Is there something I can do to confirm that? Do I need to take a blood test every so often? Do I just continue what I'm doing and stop worrying?

Jennifer

Kibbie Contributor
Kibbie
Posted
These are the questions I've been asking!!! I went gluten free after diagnosis 4 weeks ago. Before diagnosis I had no noteable symptoms that I could attribute to celiac (they were there, but they could have been attributed to something else also). I have been gluten free for 4 weeks with only one reaction. I have watched my diet and I am pretty sure I haven't gotten anything I'm not suppose to have. BUT what if I'm just not reacting? Although I have taken all the precautions and check labels, etc. I worry that I'm not reacting.

Is there something I can do to confirm that? Do I need to take a blood test every so often? Do I just continue what I'm doing and stop worrying?

Jennifer

My daughters TTG's were checked 3 months after going on the diet and now she gets check each year.... if she is getting gluten from somewhere it will show up there.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted
  • Author

Green Eyes, my son had to have a blood test a few months after we started the diet. And they told us to expect annual blood tests.

You know, now that some time has passed, I'm more settled about the whole thing. He definitely had "changes" in his bowels that week. I had prayed like crazy that he wouldn't get too sick. He was so pathetic sobbing in my arms in the restaurant and looking at me with those eyes. I kept telling him there was nothing I could do to fix it and it broke my heart. I'm the mom. I'm supposed to always be able to fix it. So I prayed and prayed. It was all I could think of to do when I felt like throwing up every time I thought about it. Then my prayers are answered and I look a gift horse in the mouth! How ungrateful is that?!?!

I was worried that he'd question it, but he hasn't at all. It didn't change him one bit. He's still scared of being glutened and as agreeable to the diet as ever.

So we're moving forward and happily living the gluten-free lifestyle. We just returned from another quick trip out of town. I took ALL of our food for this trip and it was wonderful! I made pizzas and fried rice the night before we left plus we took Amy's mac & cheese, PB&J, LaChoy Chow Mein, cereal, and lots of snacks. It was really nice. And a surprise benefit - we were at a water park and I really loved coming back to the room after being soaked all day and not having to get cleaned up to go out to eat. We just showered while the food heated up and ate in our jammies! It was perfect!

gfp Enthusiast
gfp
Posted
Well isn't that odd! I just assumed Celiacs would react the same way every time, except maybe with varying degrees of severity depending on how much gluten they actually got. Just when I think I've figured this disease out!

I think there is react and REACT .. if you see what I mean.

Last weekend I got some CC, I spent Sunday in bed feeling like I'd been kicked in my guts...

Other times I have been really bad (after an accident) ... and the reaction has been minor..??

The reaction doesn't seem to have any correlation with the amount of gluten... and some symptoms might appear and not others...

Green Eyes Rookie
Green Eyes
Posted

I have just discovered my biggest fear!!! I have been getting gluten from a b-complex vitamin and didn't realize it. Because of test and surgery, I had been off of the vitamins for the bigger portion of the last 4 weeks. When I returned home Wednesday (a week ago) I started back on the vitamins. Yesterday I discovered my blunder. First I want to kick myself for not checking in the first place.

Now I'm trying to figure out if I really have symptoms or if what I feel is from having a hysteromectomy, or even the pain medication. I don't feel sick but my stomach is a little upset. On one hand I want to be grateful for not having a full blown sick attack (whatever that entails) but then on the other hand, I'm still concerned I haven't noticed something.

Don't get me wrong, I have now gotten extra cautious, checked all other meds, go by the gluten ingredient list, etc. I guess I just sit back and wait? This disease can be the most frustrating because there are not blacks and whites. There are a LOT of grays though....

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