Levels of sensitivity

[LP023]

I do not have symptoms after eating gluten. Only sometimes. I do feel better since I quit eating gluten after I had a TTG of 25. Upper normal was 10. I have 3 kids and a husband so I’m not going to do a total gluten free home. I’m still waiting for the biopsy. I found out in January and April 26th was the soonest appointment for biopsy. I know they say to not bake with flour because it floats in the air for 24 hours and lands on other items in the house. My question is are all celiacs that sensitive or are their different levels where one person can be exposed to a flour dusting and no damage be done and others have severe symptoms in a few minutes? I know damage can still be done to intestines with no symptoms. I’m just wondering if I may be able to go on a strict diet but not have to go to the extremes of throwing everything out and never allowing flour back in my house since I don’t seem to be very sensitive to it. One website says use separate dishes and cookware. Other sites say no need because studies were done and if you put them in the dishwasher they are fine.

[patty-maguire]

Ya it’s confusing for sure. Your goal shroud be to get your gluten exposure as close to zero as you can. That said, 20 ppm or 10 - 50 mg per day is considered safe for celiac. At the end of the day you have to decide what you’re comfortable with. You should be getting follow up testing from your doctor annually and that will tell you if what you’re doing is working.  Gluten does wash off smooth surfaces with warm soapy water so you don’t have to throw everything out.  Most people, myself included do have a shared kitchen with some gluten items.  As for flour, I do t personally have it in my home because it gets into nooks and crannies and is difficult to clean. But I did take a baking course as part of my chef’s training and just made sure to wash my hands and under my nails and had no problem. 
Here is some info on setting up your kitchen https://www.naturallygluten-free.com/gluten_free_kitchen.html

and here is the Celiac Canada’s recommendation for follow testing and maintenance. You can look up the celiac association for whatever or try you live in to see what they recommend. https://www.celiac.ca/healthcare-professionals/management/
 

All the best. 

[LP023]

2 hours ago, patty_maguire said:

Ya it’s confusing for sure. Your goal shroud be to get your gluten exposure as close to zero as you can. That said, 20 ppm or 10 - 50 mg per day is considered safe for celiac. At the end of the day you have to decide what you’re comfortable with. You should be getting follow up testing from your doctor annually and that will tell you if what you’re doing is working.  Gluten does wash off smooth surfaces with warm soapy water so you don’t have to throw everything out.  Most people, myself included do have a shared kitchen with some gluten items.  As for flour, I do t personally have it in my home because it gets into nooks and crannies and is difficult to clean. But I did take a baking course as part of my chef’s training and just made sure to wash my hands and under my nails and had no problem. 
Here is some info on setting up your kitchen https://www.naturallygluten-free.com/gluten_free_kitchen.html

and here is the Celiac Canada’s recommendation for follow testing and maintenance. You can look up the celiac association for whatever or try you live in to see what they recommend. https://www.celiac.ca/healthcare-professionals/management/
 

All the best. 

I get frustrated because so literally got a call saying my celiacs lab was high and I needed a biopsy to confirm. 4 months later for the biopsy so I was left to Google to learn anything. I was given no info from the GI. Reading on Google has me thinking we’re all doomed. One lady said her husband laid his cutting board on hers in the dishwasher and she glutened from that even after washing. Is everyone that sensitive or are some of us ok and get no damage from speck of flour while others ingest one little speck and have damage?

[patty-maguire]

13 hours ago, LP023 said:

Is everyone that sensitive or are some of us ok and get no damage from speck of flour while others ingest one little speck and have damage?

I’ve read a lot on this topic and I don’t think there is a good answer, but here are some things to consider:

-the 10 - 50 mg I mentioned above is from scientific testing and the consensus is that most people with celiac can tolerate that. 
- the lady who says she was glutened by her husband laying his cutting board against hers may be correct but I suspect she doesn’t really know how she got glutened if she did. Most of us have found ourselves in that situation. We feel sick then go back over everything we’ve done and try to figure out what it might have been. 
- yes some people are more sensitive than others. 
My best advice is to 

a) work with your doctor 

b) Take people’s personal accounts with a grain of salt. Forums etc are great for support and ideas for coping but not for medical advice. 
c) if you’re looking for info go to the celiac association for your country and read books written by celiac specialists. Here are a few I’ve read and recommend. 
https://www.naturallygluten-free.com/review-gluten-freedom-alessio-fasano.html
 

https://www.naturallygluten-free.com/celiac_disease_mayo_clinic.html

https://www.naturallygluten-free.com/review-celiac-disease-a-hidden-epidemic.html

 

[LP023]

42 minutes ago, patty_maguire said:

I’ve read a lot on this topic and I don’t think there is a good answer, but here are some things to consider:

-the 10 - 50 mg I mentioned above is from scientific testing and the consensus is that most people with celiac can tolerate that. 
- the lady who says she was glutened by her husband laying his cutting board against hers may be correct but I suspect she doesn’t really know how she got glutened if she did. Most of us have found ourselves in that situation. We feel sick then go back over everything we’ve done and try to figure out what it might have been. 
- yes some people are more sensitive than others. 
My best advice is to 

a) work with your doctor 

b) Take people’s personal accounts with a grain of salt. Forums etc are great for support and ideas for coping but not for medical advice. 
c) if you’re looking for info go to the celiac association for your country and read books written by celiac specialists. Here are a few I’ve read and recommend. 
https://www.naturallygluten-free.com/review-gluten-freedom-alessio-fasano.html
 

https://www.naturallygluten-free.com/celiac_disease_mayo_clinic.html

https://www.naturallygluten-free.com/review-celiac-disease-a-hidden-epidemic.html

 

I like your view on this. There is so much misinformation out there. My dr unfortunately didn’t give me any information and the wait times are months to be seen for a specialist. I’m just wondering if a crumb will do as much damage as a piece of bread to someone’s intestines. Does a dusting of flour cause damage to intestines as bad as eating a cake. From the things I’ve read online there is no severe celiacs or mild celiacs. Some people don’t react but ALL have the same intestinal damage if they consume it. I just find that hard to believe. I really wish I could sit down and talk to someone who specializes in celiacs. The feeling of doom since I was told the blood test came back positive is unreal. The articles I’ve read say we are way more likely to develop crohns and ulcerative colitis  and cancer and that just scares the heck out of me. I can deal with the diagnosis but I can’t completely avoid gluten. None of us can. If I’m cross contaminated does it mean that my intestines will go back to being damaged like I’ve been eating it everyday? 

[RMJ]

Biological responses usually follow a pattern of dose response, that is, the larger the dose, the larger the response within an individual. For immunological responses, like celiac disease, there is wide variability between individuals. So a whole piece of cake will cause more damage than a tiny bit of contamination, but in some people the tiny bit of contamination will not cause a problem, while in others it can be very troublesome.

There are degrees of intestinal damage in celiac disease.  Biopsies are graded according to the amount of damage. In some people the villi are slightly blunted, in others there is severe damage and the villi are completely flattened.

People with celiac disease are more likely than the general population to have a type of cancer called intestinal lymphoma.  However, doubling or tripling a very, very tiny chance (general population) is still a very, very tiny chance (celiac population).

Occasional cross contamination will not put one back at the degree of damage seen prior to going gluten free. 

Hope this answers some of your questions. Welcome to the club no one wants to join!