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

I Am Totally Freaking Out.....


bfarnsworth0709

Recommended Posts

bfarnsworth0709 Rookie

I am totally freaking out. I realized the seriousness of this disease and cross contamination this weekend when I found out I was still being "glutened" by my shampoo/conditioner and I needed to check the labels on EVERYTHING, not just what I eat. So does that mean if I come across crumbs on my desk at work dropped from someone walking by, I can get sick, or by touching the shopping cart at the grocery store. How do you know what's in the soap in public restrooms? If I am married, and my husband is not gluten free does that mean he can't kiss me or I could be glutened? I am feeling COMPLETELY OVERWHELMED and feel like I need to crawl in a bubble and never come out!!

Please Help! Am I taking this way overboard and being paranoid? How do I "live" gluten free and actually have a life!?!


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



Celiac.com Sponsor (A8-M):



L.A. Contributor
I am totally freaking out. I realized the seriousness of this disease and cross contamination this weekend when I found out I was still being "glutened" by my shampoo/conditioner and I needed to check the labels on EVERYTHING, not just what I eat. So does that mean if I come across crumbs on my desk at work dropped from someone walking by, I can get sick, or by touching the shopping cart at the grocery store. How do you know what's in the soap in public restrooms? If I am married, and my husband is not gluten free does that mean he can't kiss me or I could be glutened? I am feeling COMPLETELY OVERWHELMED and feel like I need to crawl in a bubble and never come out!!

Please Help! Am I taking this way overboard and being paranoid? How do I "live" gluten free and actually have a life!?!

Some days I feel like living in a bubble because you're right, this is very overwhelming. My kids make sandwiches and othe gluteney things and are not 10% about being careful so I wipe my counters down before I do anything in my kitchen--you may want to do that at work. When I get home from grocery shoppping I just wash my hands and am very careful about not sticking my fingers in my mouth :lol: My hubby always brushes his teeth and rinses after eating gluten so he's good to go in the kissing department. It all takes time, deep breaths and many hugs...you're ok!

Mango04 Enthusiast

You can't avoid every crumb of gluten. Just do the best you can. Take reasonable precautions to the best of your ability. You will be okay :)

goldyjlox Contributor

I still use my same shampoo and conditioner that I always used...as long as you are careful not getting any into your mouth. My specialist wasnt to concerned about those as it is not ingested. I live with gluten eaters and I just make sure that I clean the space where I am going to prepare foods before I do. I wouldnt worry so much about the grocery carts or even soaps...you will make yourself go crazy. I am only two weeks into this diet and yes it sucks but I am just careful and it seems to work for me. I actually dont know if I am getting glutened as I never got sick to often so I am assuming b/c I feel more energetic and my belly is bloated any more that I am doing alright.

bfarnsworth0709 Rookie

for me....I definitely can't have shampoo/conditioner's with wheat in them. My hair sheds really bad if they have gluten and my scalp itches really really bad.

Be careful of consuming gluten b/c you don't get sick. Even if you don't feel like your having a reaction it can still be doing damage to your body. There are a lot of long term effects of eating gluten if you have celiac disease. But of course each person is different and has to do what is best for them, I just wanted to give you food for thought since you said you started 2 weeks ago. Since I was diagnosed 5 years ago, 4 1/2 of those years I still ate gluten not realizing it was like poison to my body b/c my doctor incorrectly told me it didn't matter if I ate gluten and it made me sick.

goldyjlox Contributor

Actually I have noticed that my scalp itches, I thought maybe it was dry skin, I am almost done these bottles and I have bought Dove as I read it was gluten free. I do think that I tend to not worry all the time about things, but they could be harmful to me and I dont even know it...just like makeup...I dont know what to use so I dont wear any, I need to find some.

Thanks. Sorry we dipped into your post.

sickchick Community Regular

Take a deep breath and be happy you found this place! It's all about healing and we all learn something new every single day Sweetie. Nice thing is here everybody is just as messed up as everyone else HAHAHAHA ;)B)

Good luck on your journey!


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

You might want to let your coworkers know that they can absolutely NOT eat anything containing gluten near your desk. If you see crumbs, it would be best if you would wash your desk before you work at it.

I am afraid I have given up on constantly telling my husband and daughter not to touch the keyboard and mouse right after eating a sandwich (or even eating at the computer, dropping crumbs everywhere), without washing their hands first. It is useless, they don't care. And I really can't clean the keyboard and mouse every single time before I use the computer.

I am now going to save for my own laptop computer, which nobody else will be allowed to use.

But I won't have gluten containing soap, shampoo and conditioner or other personal care products in the house (including lotion). Because you can't help touching your hair, or of course eat with your fingers after washing your hands. That is really the way you get glutened from those products. Why take unnecessary risks?

It is inevitable that we get small amounts of gluten unless we really live in a bubble. So, we should try our best to not expose ourselves to gluten on purpose. I know I get glutened at home, and I am afraid not much can be done about it. But it sounds to me like you can control your home environment completely. So, do it, but be careful not to get too paranoid, because that wouldn't be good for your mental health, which is important, too.

As you can see, others have 'trained' their husbands to brush their teeth and rinse their mouths before kissing their wives, it can be done. Unfortunately, it takes away spontaneity, but that can't be helped.

Once you really get the hang of being gluten-free, you will start to relax a little. It will all become second nature after a while and won't be so overwhelming any more.

Guest thatchickali

I feel ya. I was getting glutened by my dog. She licks my mouth and everytime I wash my lips with softsoap(which is gluten free) and mouthwash.

It really hurt to know I was getting glutened by puppy kisses.

Every news hurts to hear. It's a learning process.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

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

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • 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):



  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.