Still Trying To Piece It Together...

[Evie4]

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!

[The Fluffy Assassin]

  Evie4 said:

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]

  The Fluffy Assassin said:

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]

  Evie4 said:

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]

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 )

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

[The Fluffy Assassin]

  Evie4 said:

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 )

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.