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

Just Diagnosed With Celiac Disease


ChristenDG

Recommended Posts

ChristenDG Rookie

So I was diagnosed with Celiac Disease on February 6th and I am rather overwhelmed right now... My doctor didn't give me a lot of information, just to get on a gluten-free diet. She gave a list of websites and I checked those out, but it just seems like a lot... At first I was super positive and thinking, "Oh ok, just change my diet, no big deal." Now though, it seems as though there is a lot more I'm going to have to change...

I've been reading, and I'm just not sure what all I should do. Do I really need seperate dishes? That's an expense I can't afford (cookware is not all that cheap...). Do I need my own seperate mayo, butter, etc.? Does my husband really need to brush his teeth before kissing me if he has eaten something not gluten-free?

Maybe it's a dumb question, but how careful should I be? And what all is necessary? I'm just feeling a little lost and I want to do things right so I can heal and finally gain some sense of normalcy, but it's just a lot to take in and I'm not sure what to do right now.

Thanks so much!


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



Celiac.com Sponsor (A8-M):



Ziva Newbie

I can relate to what you are asking because I'm new at this also and have some of the same questions. I hope you get some good information. I need it too!

ravenwoodglass Mentor

So I was diagnosed with Celiac Disease on February 6th and I am rather overwhelmed right now... My doctor didn't give me a lot of information, just to get on a gluten-free diet. She gave a list of websites and I checked those out, but it just seems like a lot... At first I was super positive and thinking, "Oh ok, just change my diet, no big deal." Now though, it seems as though there is a lot more I'm going to have to change...

I've been reading, and I'm just not sure what all I should do. Do I really need seperate dishes? That's an expense I can't afford (cookware is not all that cheap...). Do I need my own seperate mayo, butter, etc.? Does my husband really need to brush his teeth before kissing me if he has eaten something not gluten-free?

Maybe it's a dumb question, but how careful should I be? And what all is necessary? I'm just feeling a little lost and I want to do things right so I can heal and finally gain some sense of normalcy, but it's just a lot to take in and I'm not sure what to do right now.

Thanks so much!

Yes you do need seperate mayo, nut butters, butter etc. You don't need to replace dishes but you do need a seperate, new toaster and new strainer for gluten-free pastas. And yes your DH does need to brush his teeth before kissing if he is a gluten eater or drinker.

You should replace scratched non-stick cookware and cutting boards and wooden utensils.

You do have to be very careful as celiac is autoimmune and it takes very, very little to set the antibodies into action. The best way to stay safe and heal fastest is to eat whole unprocessed foods. You may go through withdrawl so if you get a bit moodier than usual for a week or two know that will pass.

It does get a bit overwhelming at first but it will be worth it in the end. Welcome to the board and read as much as you can. Feel free to ask any questions needed and I hope you are feeling better soon.

Cara in Boston Enthusiast

My nutritionist gave us this advice:

First, replace the obvious contaminated items (pasta strainer, toaster, wooden cutting board and wooden utensils.) Things that go into the dishwasher and are non-porous should be fine. If you use a toaster oven, you can continue to use it, just put your bread on a piece of foil so it doesn't touch the toaster. You do need your own condiments - anything you spread with a knife. Squirt bottles (mayo, mustard, etc.) should be fine. Don't forget to get a new toothbrush for yourself.

If after several months you are still getting glutened (and we were) you need to go to the next level. Replace non-stick pots and pans, etc.

Be careful not to share things with the gluten-eaters in your house (like a sip from his water bottle) . . .

At first we were buying products that contained no gluten ingredients. After failing the 6 month blood test (no change in son's levels) we had to also eliminate foods processed in a facility that also processes wheat. I kind of wish we had just started out with that rule and not wasted so much time getting healthy.

Some advice from me:

The gluten-free products you might purchase to replace your old favorites (sandwich bread, waffles, bagels, pasta, etc.) are all pretty void of actual nutrition. They taste good and can help make the transition easier, but don't make them a part of your long term plan. Logically I should have lost weight when switching to gluten-free (no more impulse eating while out - donuts, pizza, fast food, processed junk food, etc.) but I put on 10 pounds in 6 months! Now that I steer clear of the "replacement" food and just eat naturally occurring gluten-free food (lean meats, fruits, vegetables, nuts, rice, quinoa, etc.) I am back on track.

Don't forget to check your medicine cabinet and any vitamins you may take. I found gluten in my B Complex . . . Lipstick too . . .

The first few weeks (months?) can be hard, especially shopping. But after a while, you learn what brands are safe and you get into a groove. And your craving for bread will actually diminish . . . .

Cara

ChristenDG Rookie

Thanks so much! I know a lot of this information is already on the forum boards, so I apologise for repeating!

I just finished going through my vitamins and medications and fortunately my Super B-Complex was the only thing not gluten-free. I found this website also, which could be helpful to others: Open Original Shared Link.

Fortunately, It's just me and my husband so I think transitioning will be a lot easier than if there were children and/or other family members. I was kind of freaking out at first and thinking, "Oh my goodness! How am I going to manage?" But it doesn't seem so bad.

Thanks so much! I may become a regular around here... ;)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748

    patanddiane
    Newest Member
    patanddiane
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.