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Before Dx Did You Have More C Or D

mindyandy420

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mindyandy420 Apprentice
mindyandy420
Posted

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
ravenwoodglass
Posted

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
mindyandy420
Posted
  • Author

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
OptimisticMom42
Posted

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
jerseyangel
Posted

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
mindyandy420
Posted
  • Author

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
ravenwoodglass
Posted
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
leadmeastray88
Posted

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
Roda
Posted

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
ang1e0251
Posted

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
nasalady
Posted

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

foodiegurl Collaborator
foodiegurl
Posted

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
mindyandy420
Posted
  • Author

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
unsure
Posted

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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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