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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    2. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    5. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.