Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.