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

Celiac V. Gluten Intolerance


MerrillC1977

Recommended Posts

MerrillC1977 Apprentice

If I have a gluten intolerance, rather than actual Celiac Disease...do I have to avoid gluten to the great extent that Celiac patients do (i.e. can't use pans that have ever touched gluten, i.e. if there's crumbs on my plate the entire plate is trash, i.e can't use gluten beauty products, etc.)...or will simply not ingesting gluten be enough to keep me healthy and happy (i.e. take the crumbs off my plate and keep eating, i.e. able to wash with gluten beauty products, i.e. can use the same pans that have been used for gluten meals, etc.)? Thank you.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Most people with "just gluten intolerance" get really really sick when they eat gluten - any gluten.

I would suggest you spend a month being as scrupulously gluten-free as possible,then see what happens when you ignore crumbs. That will be your answer.

krystynycole Contributor

I am gluten intolerant...no celiac label...I cannot even kiss my husband who ate gluten or drank a beer without a reaction. I have to be very strict or I will pay! Though there are some gluten intolerant people who are not that strict just as there are some celiac's who are not that strict either. Both categories have different levels of sensitivities not exclusive to one or the other.

Februaryrich Rookie

If you're very sensitive to gluten, you shouldn't be using the same pots and pans. I myself am intolerant but I can use the same pan if washed carefully. I don't have any official celiac label but I don't wanna eat gluten just to get it confirmed.

shezatrip Apprentice

Great post. I have been trying to figure this out too and can't quite get the information.

I want to know if there are certain degree's of gluten intolerance. For instance, Are there people

who can eat small splurges with no effect?

pricklypear1971 Community Regular

Great post. I have been trying to figure this out too and can't quite get the information.

I want to know if there are certain degree's of gluten intolerance. For instance, Are there people

who can eat small splurges with no effect?

I don't know. There are degrees of everything, I guess. If you are gluten intolerant and not Celiac, you could try.

Gluten intolerance is a rather new diagnostic field. Most intolerants have been told they aren't Celiac, therefore have no problem - so eat gluten. But gluten-free solved the problem.

Anyway, there was a research paper published recently about intolerants, an article in the NYT, etc. Google a bit and see what you find.

sa1937 Community Regular

Merrill, my rule of thumb was that if I could get something clean, I kept it. If not, I replaced it pretty much on the basis of need... like a new toaster, colander, wooden spoons, cutting boards, etc. Not everything has to be expensive. Since that time I've bought a lot of new things just because I feel I deserve them and it's fun to replace ancient stuff. :lol:

You'll probably have to figure out what works for you depending on your level of sensitivity.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

If I have a gluten intolerance, rather than actual Celiac Disease...do I have to avoid gluten to the great extent that Celiac patients do (i.e. can't use pans that have ever touched gluten, i.e. if there's crumbs on my plate the entire plate is trash, i.e can't use gluten beauty products, etc.)...or will simply not ingesting gluten be enough to keep me healthy and happy (i.e. take the crumbs off my plate and keep eating, i.e. able to wash with gluten beauty products, i.e. can use the same pans that have been used for gluten meals, etc.)? Thank you.

You do what keeps you healthy and feeling well. It's different for everyone and there is a wide range of sensitivity among both celiacs and people with gluten intolerance.

Pans are fine for almost anyone with gluten issues if they scrub clean with no residue (or wipe clean in the case of Teflon). The only pans that retain gluten are seasoned ones like woks and cast iron. There is no way to find out whether they make you sick without trying. The risk with beauty products are contact allergies to wheat, flaring DH, and getting the product in your mouth.

There are some extraordinarily sensitive people (both celiac and gluten intolerant) on the board who keep separate pots and dishes, but they are in the minority. I have a long-standing personal concern that the super-sensitive folks on the board make people with more typical levels of gluten sensitivity a little paranoid. There has been a lot of research showing that plenty of celiacs can tolerate a few milligrams of gluten daily with no antibodies, villous damage, or ill-effects. Most US and Canadian folks on the board are getting a bit of gluten in so-called gluten free baked goods. They all have occasional traces of gluten; certified gluten-free by GFCO means below 10 ppm, not that the food won't ever have a trace of gluten. Don't get THAT worried unless you are having gluten symptoms that just won't seem to go away.

Crumbs depend on your level of sensitivity. The only way to tell whether you react is to challenge with a few crumbs and see if you get sick.

Jenniferxgfx Contributor

I really thought because I was "just" gluten intolerant, I didn't have to be as careful as some folks here, but it turns out I'm one of those super sensitive folks.

It's all so very personal and individual. The only difference between celiac and GI is the name. Level of sensitivity isn't dictated by what the "official" diagnosis is.

It takes a conscious effort to pay attention to everything I touch and/or put in my mouth. If my reactions were less severe, I might be more flexible, but I just can't afford the setback. Listen to your body and it will tell you what you need :)

MerrillC1977 Apprentice

It's all so very personal and individual. The only difference between celiac and GI is the name. Level of sensitivity isn't dictated by what the "official" diagnosis is.

I don't think this is entirely correct. My understanding is that true Celiac damages the villi and small intestine, possibly eventually causing cancer....whereas "just" gluten intolerance doesn't cause actual damage. Although, the symptoms of each can be identical and similarly severe. Please correct me if I am wrong. Thank you.

MerrillC1977 Apprentice

There has been a lot of research showing that plenty of celiacs can tolerate a few milligrams of gluten daily with no antibodies, villous damage, or ill-effects. Most US and Canadian folks on the board are getting a bit of gluten in so-called gluten free baked goods. They all have occasional traces of gluten; certified gluten-free by GFCO means below 10 ppm, not that the food won't ever have a trace of gluten. Don't get THAT worried unless you are having gluten symptoms that just won't seem to go away.

So, is there a way to know how many milligrams of gluten are in, for example, a slice of bread, or a half-cup of pasta, etc?

Skylark Collaborator

I don't think this is entirely correct. My understanding is that true Celiac damages the villi and small intestine, possibly eventually causing cancer....whereas "just" gluten intolerance doesn't cause actual damage. Although, the symptoms of each can be identical and similarly severe. Please correct me if I am wrong. Thank you.

This is correct...sort of. If there is a lot of malabsorption with the gluten intolerance you can have long-term issues like osteoporosis, which is essentially bone "damage". There is also research linking gluten intolerance to autoimmune thyroid disease. As far as I have read, enteropathy-associated T-cell leukemia is only found with untreated celiac.

It's also impossible to tell whether a particular person with strong celiac symptoms is gluten intolerant or just having false negatives on the celiac tests. The testing is far from perfect. That means there is some risk to playing games with gluten if you have very celiac-like symptoms.

So, is there a way to know how many milligrams of gluten are in, for example, a slice of bread, or a half-cup of pasta, etc?

If you can eat a slice of bread or a half-cup of pasta, you're not gluten intolerant. Plain old flour is about 8% gluten. You'll have to do the math from there.

MerrillC1977 Apprentice

If you can eat a slice of bread or a half-cup of pasta, you're not gluten intolerant.

What if someone *can* eat a slice of bread, or a piece of pizza, or a half-cup of pasta and not feel any symptoms....yet having removed gluten from their diet made one of their main symptoms (constant minor intestinal pain) disappear? This is the case. What do you make of that?

ravenwoodglass Mentor

What if someone *can* eat a slice of bread, or a piece of pizza, or a half-cup of pasta and not feel any symptoms....yet having removed gluten from their diet made one of their main symptoms (constant minor intestinal pain) disappear? This is the case. What do you make of that?

One slice of bread or piece of pizza and no symptoms would not firmly rule out celiac or gluten intolerance as the antibodies can take some time to build up. If you are going to challenge gluten you need to eat it 3 to 4 times a day for up to a week or until symptoms appear if they appear sooner. There are also some folks who don't have GI symptoms and are diagnosed by 'accident'. In the end if you feel better without gluten in your diet then just stay gluten free. If you for some reason need a diagnosis then go back to eating gluten for about 3 months. You do still run the risk of a false negative with testing though.

ravenwoodglass Mentor

I don't think this is entirely correct. My understanding is that true Celiac damages the villi and small intestine, possibly eventually causing cancer....whereas "just" gluten intolerance doesn't cause actual damage. Although, the symptoms of each can be identical and similarly severe. Please correct me if I am wrong. Thank you.

You have to keep in mind that celiac and gluten intolerance both cause antibodies. Those antibodies can attack any organ. There are folks, for example with DH (the skin form of celiac) that do not always have gut damage but they are still considered to be celiac. Endoscopic biopsies are not perfect and do miss a lot of us so we do have to wonder how many of those that were told they were 'just' gluten intolerant simply had a false negative biopsy or blood test.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,803
    • Most Online (within 30 mins)
      7,748

    TomTomTom
    Newest Member
    TomTomTom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the  forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done. As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.
    • Scott Adams
      Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests. Also, have you had various nutrient levels checked via a blood test, and have you been taking vitamin & mineral supplements since your diagnosis?  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.    Do you still have celiac disease symptoms?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • maylynn
      Hello!  I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat a meal, I get three bites in and feel so full that I feel sick. I can't eat a full meal. Something else has to be wrong right? This can't just be more "normal" right? I have done test after test and no doctor in my area can figure anything else out. They have told me I most likely have shrunken my stomach by now with how little I am eating so that has to do with some of the sick feeling. What have you done to gain the weight back? Foods? Workouts? 
    • Bronwyn W
      Thank you so much, Scott. I find it incredibly daunting navigating this celiac space and I find comfort in your wealth of knowledge. Thank you 🙏🏻
    • Scott Adams
      I am not sure about that brand specifically, but this article may be helpful:  
×
×
  • Create New...