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

All Aboard?

bmichelle

Recommended Posts

bmichelle Newbie
bmichelle
Posted

Well I'm still pre-diagnosis but have decided to go on the diet regardless of what the outcome is. I have been researching celiac's and gluten intolerance and have a pretty good start on the dietary issues. Last night over dinner I was sharing with my parents (I am 27 but still live with my parents due to medical expenses) that they would have to be careful about getting gluten in the butter and stuff and that I need to have a some seperate cookware.

My parents thought I was being way too extreme. I compared it to a peanut allergy where the individual can't even come into contact with the allergen and they said yeah but it's not an allergy. I tried explaining that it's an autoimmune disease which is even worse but they just said well you haven't even been diagnosed.

Part of the problem may be that I stopped complaining about my symptoms a long time ago. After 5+ years and no diagnosis at some point I gave up, chalked it up to allergies or diabetes and got on with my life the best I could. But in reality I am feeling worse than ever and am desperate for a solution. So maybe I'm jumping the gun right now but I really need my parents on board with me if I'm going to be successful in elminating gluten from my diet. I can buy new butter and cookware but it won't help if they get contaminated.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

If you go gluten free, blood tests won't pick it up. If your blood tests are negative, you will really have a hard time convincing them.

WheatChef Apprentice
WheatChef
Posted

Although in most cases I am normally very much against this, play the guilt card. Ask them if they care enough about your health to make simple adjustments, ask them if they are willing to be supportive of your efforts to live a fulfilling life by trying the diet with you in the beginning. Then if all else fails, sit them down and have them start helping you to figure out what sort of financial sacrifices you can make in order to move out of their kitchen in order to be no longer be sick from their carelessness.

I was in almost the exact same situation as you when I first went gluten free and whereas one parent was fully supportive of it and even went on the gluten free diet themselves (and subsequently felt better), the other one refused to make any dietary or habit changes and continuously made me sick. It can be super frustrating when you know the simple changes that can make you well but a family member refuses to make small changes for the betterment of your health, especially when those small changes would result in an improvement in their health as well! You will probably know soon into this whether or not they are willing to be supportive of your medical situation, if they are unwilling to change then the financial situation talk becomes really important. You shouldn't have to live with someone who is harming you out of laziness.

As far as the butter goes though, start using a different brand than them and keep it on a different shelf, create a "safe" shelf for you or even buy one of those little dorm room fridges if you really must. If your parents use butter wrapped in paper, buy one that's wrapped in foil or vice versa. Making the most obvious visual differences between the safe butter and the no holds barred butter will help keep them from accidentally using your stuff.

bmichelle Newbie
bmichelle
Posted
  • Author

Thank you all. I will keep working on it. I am not eating gluten free yet, just preparing to do so soon. However I typically don't eat a lot of gluten laden products and have been cutting back wheat for a couple of months (for other reasons). I am now allowing myself free reign in the pantry until I get tested (pretzles, tortillas, buns to go with my lentil burgers etc.).

Maybe a note from my doctor will help. I see my endocrinologist wednesday (tomorrow) and am hoping they will do the blood test there. And I agree that some of my family could quite possibly benefit from eating gluten free as well especially if I end up with a positive diagnosis.

Moving out just isn't possible. My parents would have to pay the rent.

WheatChef Apprentice
WheatChef
Posted

Before you make the switch, eat a lot of donuts, pretzels, artisan breads and drink plenty of microbrews. Those are the only things I miss, just not enough to go through the pain.

K8ling Enthusiast
K8ling
Posted

My husbands family is the same way and I am stuck on vacation with them right now. It has been harrowing to say the least for me, trying to prevent CC and whatnot. My MiL just called me "stupid" for feeding my toddler like me because I didn't want to get cc'd. I say, toss out the guilt card (even though I don't usually endorse that) and do what you need to do to get better. My husband didn't understand it either at first but when he saw how miserable it made me to be sick like that he adjusted quickly.

Best of luck to you, and ((good vibes)) !!!

kareng Grand Master
kareng
Posted

I got red duck brand tape at Walmart or target. I put it on my butter, PB, etc & this helps everyone keep out of it.

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

Celiac.com Sponsor (A8-M):


K8ling Enthusiast
K8ling
Posted

Thats what I did too! :) I did hot pink though. My MiL laughed at THAT too!! Oh well, I still have hot pink duct tape and a bin of food.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,258
    • Most Online (within 30 mins)
      7,748
    Ldimmick
    Newest Member
    Ldimmick
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Does this definitely suggest Coeliac Disease?

      By cristiana · Posted

      Hello @Heather Hill You are most welcome.  As a longstanding member and now mod of the forum, I am ashamed to say I find numbers and figures very confusing, so I rarely stray into the realms of explaining markers. (I've self-diagnosed myself with dyscalculia!)  So I will leave that to @Scott Adams or another person. However as a British person myself I quite understand that the process with the NHS can take rather a long time.  But just as you made a concerted effort to eat gluten before your blood test, I'd advise doing the same with eating gluten before a biopsy, in order to show if you are reacting to gluten.  It might be worth contacting the hospital or your GPs secretary to find out if they know what the current waiting time is. Here is a page from Coeliac UK about the current NHS recommendations. https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=If you remove or reduce,least six weeks before testing. Cristiana  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
    • Heather Hill
      Does this definitely suggest Coeliac Disease?

      By Heather Hill · Posted

      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
    • trents
      Test uncertainty

      By trents · Posted

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
×
×
  • Create New...