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

Before Dx Did You Have More C Or D


mindyandy420

Recommended Posts

mindyandy420 Apprentice

I have more of the issue with D than C. C does happen but more often D. IBS? Painful burning upper left side before BM....not always. I have BM's that can be normal one sitting and D the next. Then the itchy blistery thing on my hands.

Before dx did you have issues with C or D?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

For years I had severe C. To the extent that I usually only had one BM a week. My Mom used to call it 'rabbit poo' and way back then the doctors told her it was normal for me. Then about 15 years before I was finally diagnosed it switched to daily D and then daily and 'wake me up in the middle of the night D'. They told me I had IBS and it wasn't until I was finally diagnosed that my GI doctor told me IBS does not wake a person up at night. Too bad he didn't listen when I say him as it would have saved me years of pain and residual damage.

As to that rash. If you can get to a dermatologist and have them biopsy the area NEXT to the rash, not the rash itself they can tell you whether it might be DH. This is the skin form of celiac and if you have DH you have celiac.

mindyandy420 Apprentice

So sometimes my rash doesnt stay long enough. Like if I were to make an appt. say I cant get in for 2 weeks sometimes my rash is gone by then. What do I do then?

OptimisticMom42 Apprentice

I was constantlypated (constantley constipated) until I had enough damage to keep me from digesting milk and soy. The undigested milk and soy gave me "D". After removing those from my diet it was cement in the intestines until I removed all gluten. Now I'm daily for the first time in my life that I can remember.

jerseyangel Proficient

I always lean to the D side of things. I was sick, but undiagnosed for many years, and for most of them my main symptoms were persistent anemia and nausea with a "nervous stomach where I would sometimes have D, but not always. In the year or so before I was diagnosed, I began to have D frequently (at times urgent), weight loss, tingling and numbness, anxiety, depression, and brain fog.

I'm gluten-free for 4 years now, and always have Immodium with me, although I don't need it nearly as much as I once did. I also take Caltrate with vitamin D twice daily, which can sometimes help with D.

mindyandy420 Apprentice

Lately its been more D for me. In the past....I have what I believe is C. Does C mean not having a BM for like a week or more? That was me. My husband has a BM once a day where I was having one once a week if I was lucky. I didnt really know what C meant. I thought it was where you felt you have to go but cannot.

ravenwoodglass Mentor
So sometimes my rash doesnt stay long enough. Like if I were to make an appt. say I cant get in for 2 weeks sometimes my rash is gone by then. What do I do then?

In some cases if you explain to the derm what is going on and what you suspect is causing it during your first appointment they can arrange for you to be seen quickly when the rash is active.


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



Celiac.com Sponsor (A8-M):



leadmeastray88 Contributor

I definitely had more C.

Even as a child, I'd wake up with excrutiating stomach pains in the middle of the night and sit on the toilet for hours - I wouldn't go for days at a time. My mom told my pediatrician and he told her that I needed to eat more fibre. I know now why that didn't work :rolleyes:

Since going gluten-free I haven't had a problem anymore :) Once to twice a day is about normal for me now.

Roda Rising Star

Definately constipation. My mom told me that I even had severe problems with it as a baby and child. As an adult (I find this funny now) I would eat shredded wheat and triscuts and it would help the constipation.

ang1e0251 Contributor

I had almost constant D. I thought it was because I had my GB out. Well, that contributed but as a further trigger to celiac disease. Now I get C if I eat too many alternate grains. I really feel better when I don't eat any grain.

nasalady Contributor

Definitely D! I'm almost never constipated. Always had D as a child.

foodiegurl Collaborator

I have always had C, but thought it was normal for me. i guess I didn't even know it was C, I just thought it was normal to go 1-2 times per week, as my mom does too.

I would try everything and nothing would work, except exercise...even Colace did nothing.

I do get D when I am super nervous though, but I am guessing that has more to do with anxiety than Celiac. The other day when I went for my endoscopy, I had D 4 times in the hospital because I was so nervous. Even when I had to give my name when I first got there, I had to excuse myself to go potty :(

Right before being diagnosed in Feb, it got so bad, I just wanted to go so badly, like I just wanted to "empty" myself, but couldn't....sorry that sounds icky.

After being gluten-free, it is much better. I am still not always a daily person, but MUCH better!!

mindyandy420 Apprentice

This information is so helpful. I did not know that being C meant going 1 a week. Then I can say I bounce between C & D. Right now I am D. I can definetly say that I was more C before. I was a once a week girl. If I was lucky.

unsure Newbie

BOTH! It is horrible! I just got tested yesterday for celiac disease so hopefully my blood is positive so I wont have to do the endoscopy. Ive already had a colonoscopy, so compared to the prep. this seems much easier. my boyfriend and i laugh because we're only 22 and 23 and he has chrons, so we are in this together!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    2. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      nothing has changed

    3. - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is it gluten?

    4. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    Bea71
    Newest Member
    Bea71
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.