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

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
      131,542
    • Most Online (within 30 mins)
      7,748

    Carol Zimmer
    Newest Member
    Carol Zimmer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.