Other food intolerances

[flowerqueen]

58 minutes ago, manasota said:

FINALLY!  I've been scouring this site for 6 years; and I finally feel that I've found my Peeps!  Most on this site say that if you are totally gluten free, and unless you have refractory Celiac, you will get well within weeks to maybe 2 years.  Not so for us.  I always felt they were implying that it was MY fault if I didn't get well.  I don't think they were; but nonetheless, I FELT it was my fault.  Until now!!!

I have proof via blood tests that I am gluten free and I have healed my intestine and my Celiac is not active.  So my continuing issues are something else and NOT my fault.

So, we, on this post, developed new intolerances keeping us from getting well.  Perhaps we fall into a subclass of Celiacs for whatever reason.  I think it may benefit us to share as much info as possible.  I am thinking of posting everything I CAN eat.  If we all do this, maybe we'll be able to enlarge our diet.  Increasing variety should aid in better nutrition.

Is anybody else interested in this?  If so. we should probably start a new post with a more specific title about developing new tolerances AFTER going gluten free--and which keep us debilitated.

Opinions?????

It sounds like we all have different intolerances though, so not sure how this would work. I'd be interested in the opinion of others though. 

[flowerqueen]

54 minutes ago, cyclinglady said:

I am not trying to be a Debbie Downer......So, no antibodies in your blood, but how do you know if you have intestinal healing?  Did you have another endoscopy/biopsy?  Remember, some celiacs are symptom free yet have intestinal damage.  

Good news about being dietary compliant.  That is huge! 

 

54 minutes ago, cyclinglady said:

I am not trying to be a Debbie Downer......So, no antibodies in your blood, but how do you know if you have intestinal healing?  Did you have another endoscopy/biopsy?  Remember, some celiacs are symptom free yet have intestinal damage.  

Good news about being dietary compliant.  That is huge! 

AHi Cyclinglady, a year after my diagnosis, I had another endoscopy and there was no damage and they were quite happy all was healing. I agree though, that other biopsies need to be taken, and cannot rely on blood tests alone. My blood tests weren't positive any way, only the biopsies.

[Gemini]

1 hour ago, flowerqueen said:

 

AHi Cyclinglady, a year after my diagnosis, I had another endoscopy and there was no damage and they were quite happy all was healing. I agree though, that other biopsies need to be taken, and cannot rely on blood tests alone. My blood tests weren't positive any way, only the biopsies.

You can rely on blood work alone if your blood work was really positive at diagnosis.  There are many, including me, who had sky high numbers on all tests in the blood panel. If you never triggered the blood work, you would definitely have to rely on the biopsy. You also have to look at other things like weight gain, for those of us who were the skinny Celiac's and resolution of symptoms........if you were highly symptomatic.  Checking vitamin deficiencies again for resolution is another good way to go.This is not a one size fits all disease, as we all know. Not everyone needs a biopsy for diagnosis or to check for healing. 

[manasota]

Ditto what Gemini said.

I withdraw my previous suggestion about posting the food we do tolerate.  Upon reflection, not such a hot idea for this forum.

[cyclinglady]

Please let me clarify.  I did not mean to imply that people were not healing from celiac disease.  I also did not mean to imply that a follow-up endoscopy is required.  I am not an doctor, nor an expert in celiac disease.  But with so many of us experiencing food intolerances (myself included), this topic has sparked my curiousity.  Specifically, leaky gut or increased gut permability.   Yes,  I know that it is not discussed much except on questionable websites, but I have been looking into zonulin:

Zonulin syn. Haptoglobin (http://www.uniprot.org/uniprot/P00738) is a protein that modulates the permeability of tight junctions between cells of the wall of the digestive tract. It was discovered in 2000 by Alessio Fasano and his team at the University of Maryland School of Medicine.

 

1. Okay this was sourced by Wiki but might this be the source of intolerances beyond gluten?  How about a more legit site:

 

Open Original Shared Link

Here is a lecture by Fansano that I found fascinating.   It discusses zonulin, gut permability, microbiomes, immune response, environmental triggers, and the human genome.   Lots of theory.  Still we do not know enough about our guts and the possible relation to autoimmune disorders and general health.

Again, my apologies if I offended anyone.   I am curious about healing.  How do we really know if we are healed and I am not just talking about celiac disease?  Manasota and FlowerQueen are struggling still.  They are gluten-free diet compliant, antibodies are down, but what is making them/us ill still?  

 I know that celiac disease is the only autoimmune disorder that is triggered by a known substance -- gluten.  But what triggers the others (e.g MS, RA, Lupus, TD1 etc.)?

just something to think about.......

 

 

 

 

 

 

[cristiana]

2 hours ago, cyclinglady said:

Again, my apologies if I offended anyone.   I am curious about healing.  How do we really know if we are healed and I am not just talking about celiac disease?  Manasota and FlowerQueen are struggling still.  They are gluten-free diet compliant, antibodies are down, but what is making them/us ill still?  

This is a really interesting topic. 

I do find it curious that many of my coeliac friends here in the UK never go anywhere near any websites for help - they don't need to - because steering free of gluten has been all they have had to do.  They wouldn't think twice about the possible risks involved in going to a restaurant and ordering an ostensibly gluten free meal.   Any glutening incident might just cause a bit of diarrhea but they will feel off for 24 hours or so and that is it.  

And yet here we are, the rest of us, still struggling several years on.

I also wonder if sometimes my own mental outlook has held me back and could be creating more problems.   Feeling unwell and being a hypochondriac is not a good combination: the gut-brain connection and all that.

Open Original Shared Link

Thanks for posting the video by the way - perhaps Fasano mentions if stress plays a part.   I look forward to watching it. 

 

 

[flowerqueen]

Hi Cyclinglady, I've just watched the lecture in your link. I agree it is fascinating, the mind boggles as to where this is all leading.  I take acidophilus on a regular basis, but judging by what was said in the lecture, we all need it tailoring to our specific needs and genes.  I recently read a book on microbiology and this was equally interesting, it's called Missing Microbes by Martin Blaser (a doctor and scientist) he talks of how killing bacteria creates modern plagues.  I believe Dr Blaser was one of the earlier discoverers of the effects of removing 'good bacteria'.