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

My Daughter Found This


w8in4dave

Recommended Posts

w8in4dave Community Regular

My daughter found this site that was very interesting , she did a search because she was having so many problems even after going gluten free. so I hope it is ok to post it here so I can get some opinions on it. 

 

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



AlwaysLearning Collaborator

Thanks for sharing this. 

This does remind me that I'm supposed to be starting a food diary so that I can note any additional intolerances or reactions I may have.

kareng Grand Master

This is just someone's blog.  There is no scientific evidence for this "cross-reactivity" in Celiac disease. 

 

Open Original Shared Link

"What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue."

 

 

This "laboratory" uses Social media, such as  FB and "blogs" to promote their products.

 

Open Original Shared Link

notme Experienced

something else to think about:  if your gut is healing, many of these things are irritants to damaged intestines.  yes - keep a food journal!  but keep in mind that you may be able to add these things back once you are healed enough (so that's good news - yay!)  w8n4, you might want to skip dairy for awhile until your villi heal because that's where the stuff (enzyme?) to digest lactose is produced - at the tips of your villi.  so, if it's still damaged, it can't produce the stuff you need right now but after you are healed, you can eat it - i know i can - love me some cheeeeeeeeeeese!  i know it sounds like alot, but it was surprisingly easy.  pretty soon i was at 6 months  no dairy and i started adding a little bit back, one at a time and journaling my response.  i still drink lactaid milk, but i CAN drink regular milk.  i just like it because i can put it into my tea in the morning and don't feel like i'm ambushing my guts lolz :)

IrishHeart Veteran

Someone's blog stating things as a fact to promote lab tests is not something I find very compelling.

 

We have discussed this supposed cross-reactivity issue many times on here, but I still find it highly doubtful (as does a  leading celiac center)

 

Not one celiac specialist has supported this theory or these labs tests or presented any research to substantiate these claims. Maybe when they do, I will read the research on it and see what the experts have to say about it.

 

Please read the information Karen has posted above.

 

If someone is having additional food intolerances, it could be because the gut is still healing.

It takes time to heal approx. 22 feet of intestines.

 

 

 

^_^ I find it very interesting that "Dr. Tom" has made this comment in her comment section. 

The evidence suggesting coffee is cross-reactive is for Instant coffee. There is no evidence this carries over to regular or espresso coffees.

Salax Contributor

While I am not a scientist, logical thought process in my mind reads that if the body’s immune system attacks gluten, creating antibodies and attacking health tissue (villi), it could seem probable that the immune system could also develop antibodies/attack healthy issue with other foods. Whether or not that has been discovered we don't know. But the likelihood of it happening, I think is there. More specifically though we being Celiac or having other food intolerances know that this had to stem from something, so could that be all interrelated? I don't know, but I think as time goes on we (people of the world) will see more and more intolerances to our food as the quality of the food decreases (cough Monsanto cough) and our bodies don't know what to do with it. But that’s another story. Interesting read though, makes you wonder what time will tell with a disease like Celiac and other intolerances as they seem to be getting worse and worse.

IrishHeart Veteran

Salax,

 

I do agree about the development of other intolerances --food, environmental, chemical (I have a few myself)-

 

but I do not buy the "cross-reactivity with gluten theory"  yet because no evidence from celiac experts exists as far as I can find.

 

If those foods specifically listed on that blog site were as dangerous to us as gluten, most of us would be dead by now.

 

IMHO, as always. :)


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

I just wanted to hear everyones opinion , and see if your mind was open  ... Just wondering ... 

w8in4dave Community Regular

Ok yes Kareng is right. there is no science behind it. Mods can take it out ... Sorry

dilettantesteph Collaborator

I think that the cross reactivity theory may have come from cross contamination.  It is known that some celiacs react to lower levels of gluten than others.  It is known that some celiacs with ongoing symptoms heal when put on a cross contamination elimination diet.  This has been discussed in the super sensitive section.  It is my opinion and experience that the items that are supposed to cause cross reactivity are the ones which are often cross contaminated. 

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,196
    • Most Online (within 30 mins)
      7,748

    Jen Fleming
    Newest Member
    Jen Fleming
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.