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

Newly Dx And Feeling Overwhelmed.

49erlady

Recommended Posts

49erlady Newbie
49erlady
Posted

Just got diagnosed a week ago and doing my best to live gluten free. So much to learn! I was also dx with crohns at the same time which throws another wrench in my food as I have to eat bland foods, no fresh fruit or vegies right now either. Eventually as my crohns symptoms heal I'll be able to add food. However, right now it's frustrating. Getting pretty tired of scrambled eggs, chicken, rice, and potatoes.

My family is wonderful and helping me out. However, Im feeling kinda out of control if that makes any sense. I am double checking everything they get for me that they believe are gluten free. I'm double washing my dishes because our dish washer its working right now. I don't want them to think i don't trust them or appreciate what they are doing. I just have this need to know what exactly is going into or touching my food. Am I over doing it? Or is this normal? Any good suggestions?

Also, anyone else also dx with crohns?

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

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted

Welcome! The beginning of the gluten-free adventure (I try to think of it that way versus a challenge) is really hard...a steep learning curve about everything. I'm six months in and I am only now starting to feel like maybe I can pull this all off successfully. It does get easier. I can say that at the beginning I was completely paranoid about the kitchen, dishes, ingredients, etc. I basically didn't want anyone else touching anything I was even thinking of ingesting. My family humored me -- my husband (who hates to cook or shop) happily handed over everything kitchen and food related and made himself scarce! I have relaxed a bit but also I figure a little paranoia won't hurt me (right!?!?) if it means I am super-careful about what I am cooking and how I am cooking it. I was so sick prior to diagnosis that being extra-vigilent is the price I am willing to pay for getting healthy again.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Just got diagnosed a week ago and doing my best to live gluten free. So much to learn! I was also dx with crohns at the same time which throws another wrench in my food as I have to eat bland foods, no fresh fruit or vegies right now either. Eventually as my crohns symptoms heal I'll be able to add food. However, right now it's frustrating. Getting pretty tired of scrambled eggs, chicken, rice, and potatoes.

My family is wonderful and helping me out. However, Im feeling kinda out of control if that makes any sense. I am double checking everything they get for me that they believe are gluten free. I'm double washing my dishes because our dish washer its working right now. I don't want them to think i don't trust them or appreciate what they are doing. I just have this need to know what exactly is going into or touching my food. Am I over doing it? Or is this normal? Any good suggestions?

Also, anyone else also dx with crohns?

My biopsy report mentioned the possibility of Crohn's, but the Dr. said she didn't think I had it. My sister has it, so I thought it worth testing for?

I've read several articles suggesting that Crohn's patients do better off gluten, so hopefully your gluten-free diet will help? Probiotics are a good idea, and there are some people that are finding adding coconut oil to their diet daily is healing to the intestine. I've just started eating a spoonful at each meal. It has so many benefits to the body that I figure it's worth trying?

I am VERY paranoid about anyone preparing my food. I want to do it myself so I know there's no cc. We have a shared kitchen so the chance of getting glutened is there.

My family thinks I'm obsessive because I have several plates, bowls, and glasses, and silverware that I keep set aside for my use. I wash them by hand immediately after eating rather than putting them in the dishwasher. I've seen dishes come out of the dishwasher with crud on them. I'm not taking any chances on that crud being gluten!

My son eats a lot of canned pasta, etc. and the dishes sit in his room until he has a big stack, then he puts them in the sink to be rinsed and added to the dishwasher. I wear latex gloves when handling them. They can roll their eyes all they want around here, I'm going to do what I need to, to feel safe.

Skylark Collaborator
Skylark
Posted

Yeah that's pretty normal. I am OCD about reading labels ever since something changed ingredients and I got glutened. Family members shouldn't want to make a mistake because they love you, but they don't have that nagging fear of being miserable. When I visit family they have learned to just hand me labels and let me double-check or point out the gluten-free label on the box. I just joke with my family and call it my gluten OCD. They've seen me ill and they understand why I'm a little paranoid. :lol:

49erlady Newbie
49erlady
Posted
  • Author

Thank you all for the responses. Makes me feel better knowing I'm doing what's right for my health. My family is wonderful but they don't understand just how I'll it makes me feel. I hope they never do!

Thanks for the coconut oil info. I will look into that.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @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...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      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!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      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 ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    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)

  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @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
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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.