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Before Dx Did You Have More C Or D


mindyandy420

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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?


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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.


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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!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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