Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Still Trying To Piece It Together...


Evie4

Recommended Posts

Evie4 Apprentice

I'm a 16+ IBS sufferer that has responded to a mostly gluten-free diet the last 12 months and have more recently gone 100% gluten-free. I'm not willing to do a gluten challenge but I can't help but look back on what could be possible indications of when I may have shown signs of gluten intolerance--outside of my "IBS" symptoms.

One striking memory is in 2007, my husband and I spent 6 weeks in Spain. I developed cracks in the corners of my mouth that even got the attention of my husband "yeah, what's up with that on your mouth?". He was perplexed. At the time I thought perhaps it had to do with the fact that I wasn't eating very much meat (vitamin B? ), but now I'm wondering if it had to do with the bread I ate daily for breakfast at the buffet, and sandwiches or crackers in the evening. At home, we rarely buy or eat bread and baked goods. So this was a real dietary change for me. Once we got back to the US, it cleared up. I thought I read somewhere about this being a symptom.

I look at my parents, and I wouldn't be suprised that they and at least some of my siblings have problems with gluten. I just submitted samples for a DNA test. I'll keep doing my gluten-free lifestyle no matter the outcome (I understand the limitations of the test), but I can't help be curious and see what's in or not in the genes.

I started sublingual B-12, not noticing too much over the past week, but it seems the past couple nights I haven't awakened numerous times. I felt like I slept more deeply.

This site is a blessing, you guys have given me some direction. I really like my doctor, but she hasn't been any help to me in improving my "IBS". I feel like there is still hope to improve my condition and not feel crappy half my life!

Oh and darn! When I was in Spain, we went to Corte Ingles supermarket that had a big gluten-free section! Wish I knew then what I know now!!! I would've been sampling all kinds of stuff!


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast
I'm a 16+ IBS sufferer that has responded to a mostly gluten-free diet the last 12 months and have more recently gone 100% gluten-free. I'm not willing to do a gluten challenge but I can't help but look back on what could be possible indications of when I may have shown signs of gluten intolerance--outside of my "IBS" symptoms.

One striking memory is in 2007, my husband and I spent 6 weeks in Spain. I developed cracks in the corners of my mouth that even got the attention of my husband "yeah, what's up with that on your mouth?". He was perplexed. At the time I thought perhaps it had to do with the fact that I wasn't eating very much meat (vitamin B? ), but now I'm wondering if it had to do with the bread I ate daily for breakfast at the buffet, and sandwiches or crackers in the evening. At home, we rarely buy or eat bread and baked goods. So this was a real dietary change for me. Once we got back to the US, it cleared up. I thought I read somewhere about this being a symptom.

I look at my parents, and I wouldn't be suprised that they and at least some of my siblings have problems with gluten. I just submitted samples for a DNA test. I'll keep doing my gluten-free lifestyle no matter the outcome (I understand the limitations of the test), but I can't help be curious and see what's in or not in the genes.

I started sublingual B-12, not noticing too much over the past week, but it seems the past couple nights I haven't awakened numerous times. I felt like I slept more deeply.

This site is a blessing, you guys have given me some direction. I really like my doctor, but she hasn't been any help to me in improving my "IBS". I feel like there is still hope to improve my condition and not feel crappy half my life!

Oh and darn! When I was in Spain, we went to Corte Ingles supermarket that had a big gluten-free section! Wish I knew then what I know now!!! I would've been sampling all kinds of stuff!

Cracks at the corner of the mouth are usually B-6 or riboflavin (B-2) deficiencies, whereas as you say, celiacs are more usually short on B-12. But anything's possible.

Evie4 Apprentice
Cracks at the corner of the mouth are usually B-6 or riboflavin (B-2) deficiencies, whereas as you say, celiacs are more usually short on B-12. But anything's possible.

Is it atypical for celiacs/intolerants to have B-6 and B-2 deficiencies? I realize now that I assumed if the intestines (villi) are compromised there could be a problem with vitamin absorption in general.

It may be a stab in the dark, I'm giving the sublingual B-12 a shot because my fatigue and foggy head has gotten progressively worse. It's hard for me to imagine I don't consume enough in the way of nutrients, I'm almost a fanatic about good nutrition. But...I haven't been 100% gluten-free this past year--however now I'm determined to be. I'm so hoping for some positive results...even the smallest ones to help me continue to be hopeful :)

The Fluffy Assassin Enthusiast
Is it atypical for celiacs/intolerants to have B-6 and B-2 deficiencies?

Our symptoms vary wildly; it's hard to say what's atypical when there isn't really a typical. Here's the Mayo Clinic on celiac and malabsorption: Open Original Shared Link

You might want to try adding fiber to your meals. I've just started eating a big plate of steamed vegetables with lunch and dinner, and the mystery trots/ irritable bowel syndrome type symptoms have miraculously vanished. Hypoglycemia is retreating. Hey, who knew that actually digesting your food would be beneficial?:)

Evie4 Apprentice

Unfortunately increased fiber (like supplements) only made things worse for me--really bad. I always eat lots of fresh fruit and vegetables--before I went gluten-free even prunes didn't touch my constipation. So far gluten-free is producing the best results and I have no problem with that any longer.

I'm anxious to see how things go after 6 months 100% gluten-free. Not expecting a miracle, but it will give me 6 cycles to see how I do during ovulation which is when I really suffer the most. I did have a couple months where for the first time I managed to NOT take the spasm medication, but I cheated before the last cycle (a friend brought back fresh baklava from Turkey) and I indulged. Probably one of the worst things I could've eaten as they used highly glutened flour. (I feel like I'm in the confessional :huh: )

Thanks for the link, I'll go read the info there!

The Fluffy Assassin Enthusiast
Unfortunately increased fiber (like supplements) only made things worse for me--really bad. I always eat lots of fresh fruit and vegetables--before I went gluten-free even prunes didn't touch my constipation. So far gluten-free is producing the best results and I have no problem with that any longer.

I'm anxious to see how things go after 6 months 100% gluten-free. Not expecting a miracle, but it will give me 6 cycles to see how I do during ovulation which is when I really suffer the most. I did have a couple months where for the first time I managed to NOT take the spasm medication, but I cheated before the last cycle (a friend brought back fresh baklava from Turkey) and I indulged. Probably one of the worst things I could've eaten as they used highly glutened flour. (I feel like I'm in the confessional :huh: )

Thanks for the link, I'll go read the info there!

You might try laying off the fruit. I had a diarrhea-free fruit-free weekend, but I had a banana left. This morning I ate it and minutes later had to run to the bathroom. So it's possible that it wasn't the big plates of vegetables that were helping me but the absence of fructose. Anyway, something to consider.

Edit: This was on a recent thread on this board: Open Original Shared Link Sorting through the jargon, it basically says that humans aren't particularly good at handling fructose. One can guess that with damaged digestive systems, we celiacs are probably even worse in this regard. Again, something to consider. Good luck.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,350
    • Most Online (within 30 mins)
      7,748

    JohannesW85
    Newest Member
    JohannesW85
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
      Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see.  I never had any of those Pellagra skin changes, or Casal’s necklace. Just itchiness in the supraclavicular hollows on both sides of my neck, and the anterior aspect as my neck radiation site.  The hollows had no changes until I scratched them, then I got the rash on those areas like the ones I have now scattered in different areas, usually on both sides with the exception of my anterior thighs. My right is affected, my left isn’t. I am 70 and have all my teeth as well - amazingly after having had max dose radiation in 2002. 😂 Unfortunately, because of long term changes in my oral mucosa because of it I can’t use mouthwashes - even non-alcohol ones, as they all burn my mouth like fire. Toothpastes burn as well, but not nearly as bad. I have an electric toothbrush but it is getting more difficult to use due to increasing trismus. Some days I cannot open my mouth wide enough to get the electric brush between my back teeth, so on those days I use a regular one. Gotta do what you gotta do.  Thank you for your input. Any insight I can get into this is appreciated. So, for now it’s the waiting game for test results, then we can form a treatment plan going forward. 
    • James47
      Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    • James47
      Hi everyone I'm James, I hope you are all feeling well??. Accidentally had gluten at weekend and I've had severe diarrhea since sat night. My question is ,the longer someone like myself has been following a strict gluten-free diet will the exposure to gluten be lot more extreme as body now has been free of it well over a year ? Any information be much appreciated and any tips on how to stop the constant diarrhoea I have currently also be appreciated guys x
    • Cathijean90
    • Wheatwacked
      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
×
×
  • Create New...