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A Few Questions From A New Celiac

Aeva

By Aeva
in Coping with Celiac Disease

Recommended Posts

Aeva Rookie
Aeva
Posted

I've had GI issues for 13 years (currently being 18), diarrhea being my main complaint (several times a week). I'd tried the gluten-free diet for about 9 months several years ago, but gave up due to no actual diagnosis, and no improvement in my symptoms. About two months ago, I got my results back, which was normal apart from:

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Vitamin D deficiency (which I previously was aware of and is proving stubborn to correct)

Since being diagnosed, I have been strict about what I eat. However, I am still getting a lot of, as my boyfriend calls it, "bubble-guts", as well as abdominal pain. Since my digestive system has never been "normal", I'm not sure if things are having a hard time regulating (i.e. I'm constipated due to lack of fiber, which I have been trying to rectify), if it's just my body still healing, or if there's something else going on. What do you guys think?

Also, how do I tell how sensitive I am at this point? For example, I know some people can get 'glutened' from kissing somebody that's eaten it, or using beauty products containing it. How can I be sure either way, especially since I'm still having symptoms of...something or other?

I know I have more questions, just can't think of them at the moment. I'd be so grateful if anybody can give me some words of wisdom on either of these issues, as well as any generally helpful tips.

Thanks!

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hknowlto Newbie
hknowlto
Posted

I've had GI issues for 13 years (currently being 18), diarrhea being my main complaint (several times a week). I'd tried the gluten-free diet for about 9 months several years ago, but gave up due to no actual diagnosis, and no improvement in my symptoms. About two months ago, I got my results back, which was normal apart from:

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Vitamin D deficiency (which I previously was aware of and is proving stubborn to correct)

Since being diagnosed, I have been strict about what I eat. However, I am still getting a lot of, as my boyfriend calls it, "bubble-guts", as well as abdominal pain. Since my digestive system has never been "normal", I'm not sure if things are having a hard time regulating (i.e. I'm constipated due to lack of fiber, which I have been trying to rectify), if it's just my body still healing, or if there's something else going on. What do you guys think?

Also, how do I tell how sensitive I am at this point? For example, I know some people can get 'glutened' from kissing somebody that's eaten it, or using beauty products containing it. How can I be sure either way, especially since I'm still having symptoms of...something or other?

I know I have more questions, just can't think of them at the moment. I'd be so grateful if anybody can give me some words of wisdom on either of these issues, as well as any generally helpful tips.

Thanks!

I am surprised you haven't gotten any replies. I have been gluten free for about 18 months. It has been a remarkable change----don't give up on the diet.

hknowlto Newbie
hknowlto
Posted

I've had GI issues for 13 years (currently being 18), diarrhea being my main complaint (several times a week). I'd tried the gluten-free diet for about 9 months several years ago, but gave up due to no actual diagnosis, and no improvement in my symptoms. About two months ago, I got my results back, which was normal apart from:

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Vitamin D deficiency (which I previously was aware of and is proving stubborn to correct)

Since being diagnosed, I have been strict about what I eat. However, I am still getting a lot of, as my boyfriend calls it, "bubble-guts", as well as abdominal pain. Since my digestive system has never been "normal", I'm not sure if things are having a hard time regulating (i.e. I'm constipated due to lack of fiber, which I have been trying to rectify), if it's just my body still healing, or if there's something else going on. What do you guys think?

Also, how do I tell how sensitive I am at this point? For example, I know some people can get 'glutened' from kissing somebody that's eaten it, or using beauty products containing it. How can I be sure either way, especially since I'm still having symptoms of...something or other?

I know I have more questions, just can't think of them at the moment. I'd be so grateful if anybody can give me some words of wisdom on either of these issues, as well as any generally helpful tips.

Thanks!

I have been gluten free for 18 months and have noticed a remarkable change. You may need a longer time to heal so don't give up the diet. My major symptoms were gastrointestional along with a lot of anxiety. For fiber I use metamucil regularly.

Sarah1122 Newbie
Sarah1122
Posted

I have been gluten free for 4 months now but still deal with many of the same issues you mentioned - the "Bubble Gut" bloating and other GI issues (

Skylark Collaborator
Skylark
Posted

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Vitamin D deficiency (which I previously was aware of and is proving stubborn to correct)

How did you get no actual diagnosis? Deamidated gliadin antibodies are pretty specific for celiac.

For starters, it may just take longer than two months. It sounds like you have been sick for a while, which means there is a lot of damage. As Sarah mentioned, a lot of celiacs do better off dairy. Some are lactose intolerant, while others are sensitive to casein.

You tell how sensitive you are as your doctor monitors your antibodies. If the anti-gliadin IgA goes to normal you're probably doing OK with your diet. As you heal, you will likely get clearer signals about gluten from your body too.

Aeva Rookie
Aeva
Posted
  • Author

How did you get no actual diagnosis? Deamidated gliadin antibodies are pretty specific for celiac.

When I went on the gluten-free diet several years ago, I hadn't had an actual diagnosis. We were still pretty much doing trial and error (oh, the joys of colonoscopies, endoscopies, barium x-rays and the like) at that point. I had a ton of blood tests actually done by my specialist gynocologist for other issues, although she'd also suspected Celiac was the cause of my tummy troubles. After the tests came back, I went back on the diet.

Thanks everybody for the support! Makes you feel so much less alone in all of this!

T.H. Community Regular
T.H.
Posted

Are you still consuming dairy? Many celiacs are lactose intolerant until they've healed up, since the same area of the villi that is damaged is the one that digests lactose. It would definitely cause abdominal pain and gas issues. Might be worth a try. :-)

As for how to tell how sensitive you are? It's really nearly impossible to tell unless you are symptoms free, or your symptoms are very obvious, very quickly. Might be best to assume 'really sensitive' in the early stages, and then test out how strict you have to be once you are feeling all better.

Oh, but for the beauty products - like lipstick - having gluten and getting you? To my knowledge, that'll get pretty much every celiac. You don't have to be very sensitive for that to gluten you, I believe ( I could be wrong, but that's the impression I got).

I've had GI issues for 13 years (currently being 18), diarrhea being my main complaint (several times a week). I'd tried the gluten-free diet for about 9 months several years ago, but gave up due to no actual diagnosis, and no improvement in my symptoms. About two months ago, I got my results back, which was normal apart from:

Deamidated Gliadin Abs, IgG: 51.1

DQ8: positive

Vitamin D deficiency (which I previously was aware of and is proving stubborn to correct)

Since being diagnosed, I have been strict about what I eat. However, I am still getting a lot of, as my boyfriend calls it, "bubble-guts", as well as abdominal pain. Since my digestive system has never been "normal", I'm not sure if things are having a hard time regulating (i.e. I'm constipated due to lack of fiber, which I have been trying to rectify), if it's just my body still healing, or if there's something else going on. What do you guys think?

Also, how do I tell how sensitive I am at this point? For example, I know some people can get 'glutened' from kissing somebody that's eaten it, or using beauty products containing it. How can I be sure either way, especially since I'm still having symptoms of...something or other?

I know I have more questions, just can't think of them at the moment. I'd be so grateful if anybody can give me some words of wisdom on either of these issues, as well as any generally helpful tips.

Thanks!

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Aeva Rookie
Aeva
Posted
  • Author

Are you still consuming dairy? Many celiacs are lactose intolerant until they've healed up, since the same area of the villi that is damaged is the one that digests lactose. It would definitely cause abdominal pain and gas issues. Might be worth a try. :-)

As for how to tell how sensitive you are? It's really nearly impossible to tell unless you are symptoms free, or your symptoms are very obvious, very quickly. Might be best to assume 'really sensitive' in the early stages, and then test out how strict you have to be once you are feeling all better.

Oh, but for the beauty products - like lipstick - having gluten and getting you? To my knowledge, that'll get pretty much every celiac. You don't have to be very sensitive for that to gluten you, I believe ( I could be wrong, but that's the impression I got).

I am still consuming dairy, but it's pretty much limited to a little bit of milk in my coffee in the morning, and only butter on rare occasion. Ice cream every month or so.

In regard to the beauty products, I rarely use anything but eyeliner (Maybelline) and mascara (Covergirl), both of which I have confirmed as being gluten-free!

  • 2 weeks later...
Aeva Rookie
Aeva
Posted
  • Author

And I've had the lactose intolerance test, with a negative result.

Skylark Collaborator
Skylark
Posted

And I've had the lactose intolerance test, with a negative result.

Casein can be a problem as well as lactose. The next thing to try eliminating is soy, as it's hard to digest with celiac damage.

lucia Enthusiast
lucia
Posted

In conclusion, this is a long hard road - and 2 months in is really not enough time to heal, especially if you have had these issues for so many years. So hang in there; as hard as it can be, just move forward one day at a time. It is so worth it! You WILL feel better

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