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 Vs. Gluten-intolerant - More Or Less Strict In Kitchen?


DeerGirl

Recommended Posts

DeerGirl Apprentice

Reading old threads on kitchen organization and I started wondering --

Is there a difference between how people maintain their kitchen (how strict or stringent they are) if they do not have a confirmation of their celiac diagnosis?

I understand what a celiac diagnosis from most doctors means, as well as what gluten-intolerant means and have no judgment about what people consider themselves regardless of what their medical doctors said to them re: diagnosis. I was just wondering about how people all over the spectrum of gluten sensitivity/intolerance handle their kitchens -- and is there a trend depending on diagnosis or testing?

e.g., if people have unclear test results and so are definitely gluten intolerant but cannot tell currently if they meet clinical criteria for celiac, are they less strict about kitchen appliances/utensils and such?

I hope this makes sense.


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



Celiac.com Sponsor (A8-M):



gfcookie Newbie
Reading old threads on kitchen organization and I started wondering --

Is there a difference between how people maintain their kitchen (how strict or stringent they are) if they do not have a confirmation of their celiac diagnosis?

I understand what a celiac diagnosis from most doctors means, as well as what gluten-intolerant means and have no judgment about what people consider themselves regardless of what their medical doctors said to them re: diagnosis. I was just wondering about how people all over the spectrum of gluten sensitivity/intolerance handle their kitchens -- and is there a trend depending on diagnosis or testing?

e.g., if people have unclear test results and so are definitely gluten intolerant but cannot tell currently if they meet clinical criteria for celiac, are they less strict about kitchen appliances/utensils and such?

I hope this makes sense.

you should be just as strict! i'm going to soon be sharing a kitchen with a gluten eater, and i will have separate toaster,pots, pans (I will have red ones, he will have black ones so there will be no mistake), cooking gear, condiments, area of the kitchen, as well as a rule that there can be no flour, brownie mix, cake mix, or anything else "dusty" in the kitchen. gluten intolerant or celiac, you are avoiding gluten, we're all in the same boat. it's up to you how strict to get, some people have separate refridgerators for gluten eaters...imo thats a tad extreme, but whatever makes you feel safe and whatever you can accomodate depending on your kitchen size.

JNBunnie1 Community Regular

Well, I tested negative via biopsy, as far as I know, I never had any blood tests. However, I have al the classical symptoms. Weight loss, malbasorption, IQ loss, the rash. All of which went away gluten free. So I call myself Celiac, because like someone said, science just hasn't caught up with us and we can't know how much damage we're doing. And I'm uber careful, in fact, there's some tiny bit o'gluten getting in my food right now, which leaves me with just a rash and tiredness. And I can't figure it out!!!!!!! Anyway. Hope that helps.

DeerGirl Apprentice

JNBunnie1 -- thanks it does help. I just started wondering how individuals deal, on a day to day basis, with the vagaries of their Dx.

blueeyedmanda Community Regular

I do share a kitchen with a non-celiac who still does eat gluten. When I got diagnosed I replaced all my pots and pans that were scratched and some of my old utensils. I bought a new toaster just for me. I only buy that gladware disposable tupperware so I eliminated a lot of costs by continuing to use that, I don't have a good track record with tupperware :)

I did go through and clean the entire kitchen, washed all the cabinet shelves and such. He does not eat pasta often so we just use all gluten-free pasta and bake mixes. The gluten food he does use is kept in his own cabinet. We do share pots and pans, which seems to work for me, I am never sick. We dish wash everything which I believe gets things clean, we do prewash before throwing the dishes in there.

We wipe down counters with paper towels.

This works for us, but it may not work for everyone. Just hope this helps a bit. Good Luck :)

YoloGx Rookie
I do share a kitchen with a non-celiac who still does eat gluten. When I got diagnosed I replaced all my pots and pans that were scratched and some of my old utensils. I bought a new toaster just for me. I only buy that gladware disposable tupperware so I eliminated a lot of costs by continuing to use that, I don't have a good track record with tupperware :)

I did go through and clean the entire kitchen, washed all the cabinet shelves and such. He does not eat pasta often so we just use all gluten-free pasta and bake mixes. The gluten food he does use is kept in his own cabinet. We do share pots and pans, which seems to work for me, I am never sick. We dish wash everything which I believe gets things clean, we do prewash before throwing the dishes in there.

We wipe down counters with paper towels.

This works for us, but it may not work for everyone. Just hope this helps a bit. Good Luck :)

I just threw out an old Betty Crocker cookbook my mother gave me that she used for years. Tonight I noticed it probably had caked in gluten soaked into its pages and dusting everything. I had used it the other day to get a recipe I altered for cookies and then got a reaction from that. The cookies were great but getting an extra glutening this last week wasn't worth it. I think it was one extra thing that contributed to my getting the flu that is going around. Up until now I have been pretty resistant to everything for the last year and 3/4. So out goes the book!

Yolo

gfp Enthusiast

A simple way to look at this is:

Negative biopsy ... means pretty much nothing unless you have been really hammering the gluten for a long time and know they took lots and lots of samples etc. and even then its never definitive.

Negative blood tests ... this depends largely on 'negative' ...

Firstly AgA tests could mean you are AgA deficient hence false neg.

Then there are degrees of negative ...

I don't really think that the boundaries are so easily defined ... what is 'normal' for instance is based on taking a random population and comparing to those with positive biopsy ... BUT this assumes in every paper I have seen that the normal incidence of celiac is 1:5000 or so... (i.e. negligible) and that biopsies are definitive.

Since we know normal incidence is between 1:200 and 1:300 this means that a large proportion of those classed as control were actually celaics, indeed 10x as many as 1:xxxx .. and at the same time many of the negative biopsies were also false negatives (who knows how many) ...

So if the take the numbers as being based on a normal population having a very tiny 1:5000 chance of having celiac this skews the numbers immensely. So say your result is 12-13 its hard to say exactly what this means.

Also ... no-one seems to know if a little bit more means a little worse or what... If the average is 10 then is 11 as bad as 20??? Who knows???

This is all well and good and playing with numbers ... but in the end do people go up or down with blood tests?? I mean say you eat the same amount of gluten each day over a year would the blood tests be consistent or up and down??

Might you get a 9 one day and 15 two weeks later or would it be still 9??? Also, say you get say 11 keep eating gluten might it be 14 after a year and maybe 18 three years later ??? I.E. does it get worse and worse???

All these questions are as far as I know pretty much unanswered ... in other words its totally possible that if you go over a threshold and keep eating gluten it will get worse and worse... it seems rather possible... so should we take the risk??

My personal belief is when playing with your health then take the cautious route.


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

I don't have an official diagnosis because I went gluten free before testing. I do however react to very small amounts of gluten, so I'm very strict about my diet, actually stricter than some diagnosed celiacs I know. I'm lucky in a way to have such clear symptoms because it keeps me from cheating. :P

Pauliina

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.