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

Ciao, Just Need Some Help.


snowbunnyok15

Recommended Posts

snowbunnyok15 Newbie

Hello Everyone.

Yesterday morning I had some oatmeal and low carb wheat bread as I am working out with a trainer and losing weight, well more weight. My doctor calls me to give me the pathology results of my colonoscopy and endoscopy a couple weeks ago. She begins to tell me that in the small intestine the biopsy came back as I had a gluten intolerance. I said a what? She says, you can't eat anything with wheat, stuff like that.

Upon telling my mother she has a co-worker who has celiac disease and gave me the address to this site. I knew nothing about it really until a little over 24 hours ago. Anything I need to know Id appreaciate anyone telling me. I've been reading and reading it just all seems so overwhelming.

Even though this is a pain in the neck, I am very thankful for knowing I'm not crazy. The doctors made me feel stupid putting me on medications, nothing worked and making me feel like I was making all of this up. Different problems that made no sense. Then I finally found a "good" doctor. Who sent me to a specialist to find out the "problem" versus just giving me another pill that just wouldn't work. So, I'm very thankful that I know what's wrong with me. I just have no idea everything I must know.

Thanks for taking the time to read this...

Michelle

Claremore, Ok


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



Celiac.com Sponsor (A8-M):



cardine45 Newbie
Hello Everyone.

Yesterday morning I had some oatmeal and low carb wheat bread as I am working out with a trainer and losing weight, well more weight. My doctor calls me to give me the pathology results of my colonoscopy and endoscopy a couple weeks ago. She begins to tell me that in the small intestine the biopsy came back as I had a gluten intolerance. I said a what? She says, you can't eat anything with wheat, stuff like that.

Upon telling my mother she has a co-worker who has celiac disease and gave me the address to this site. I knew nothing about it really until a little over 24 hours ago. Anything I need to know Id appreaciate anyone telling me. I've been reading and reading it just all seems so overwhelming.

Even though this is a pain in the neck, I am very thankful for knowing I'm not crazy. The doctors made me feel stupid putting me on medications, nothing worked and making me feel like I was making all of this up. Different problems that made no sense. Then I finally found a "good" doctor. Who sent me to a specialist to find out the "problem" versus just giving me another pill that just wouldn't work. So, I'm very thankful that I know what's wrong with me. I just have no idea everything I must know.

Thanks for taking the time to read this...

Michelle

Claremore, Ok

My best suggestion for you when first going gluten-free is to do everything really bland and start with meats, veggies, and fruits. I just started the gluten-free diet about 2 1/2 weeks ago, and I'm so scared to mess up that I don't care that my food isn't incredibly flavorful. Until you do research on the best ways to find the "hidden gluten," it's easier just to avoid anything that might have gluten in it.

Be prepared to spend a lot of time making your own food. Also be prepared to be VERY frustrated when you do your first shopping trips. I would suggest sticking with the above mentioned items because I tried reading labels on my first shopping trip, and I almost walked out of the store in tears because I didn't know what items were actually safe. If you're interested in an item, start making a list of the product and manufacturer and do a quick google search when you get home. I typically search something similar to "gluten-free kraft." Most larger companies have some type of information on their websites, and otherwise you can find some other good resources through on-line product lists.

No one will claim it's easy, especially at first, and I'm definitely no expert, but I wish someone would have given me this same advice when I first started.

One last thing, if you choose to go out to eat, either be prepared to be VERY specific about what you can and cannot have, or at least make sure that they do things such as clean the grill and utensils before they make your steak (just an example) and that they don't put any spices on it. Also remember something as simple as a hamburger could have fillers in it to make it more flavorful, so actual pieces of meat are safer.

gfp Enthusiast
My best suggestion for you when first going gluten-free is to do everything really bland and start with meats, veggies, and fruits. I just started the gluten-free diet about 2 1/2 weeks ago, and I'm so scared to mess up that I don't care that my food isn't incredibly flavorful. Until you do research on the best ways to find the "hidden gluten," it's easier just to avoid anything that might have gluten in it.

Be prepared to spend a lot of time making your own food. Also be prepared to be VERY frustrated when you do your first shopping trips. I would suggest sticking with the above mentioned items because I tried reading labels on my first shopping trip, and I almost walked out of the store in tears because I didn't know what items were actually safe. If you're interested in an item, start making a list of the product and manufacturer and do a quick google search when you get home. I typically search something similar to "gluten-free kraft." Most larger companies have some type of information on their websites, and otherwise you can find some other good resources through on-line product lists.

No one will claim it's easy, especially at first, and I'm definitely no expert, but I wish someone would have given me this same advice when I first started.

One last thing, if you choose to go out to eat, either be prepared to be VERY specific about what you can and cannot have, or at least make sure that they do things such as clean the grill and utensils before they make your steak (just an example) and that they don't put any spices on it. Also remember something as simple as a hamburger could have fillers in it to make it more flavorful, so actual pieces of meat are safer.

Well, Cardinemight be new with only 2 posts but that is exactly what I would have said!

More tommorow (hopefully) meanwhile try searching this site for cross contaimnation (we say CC) and hidden gluten.

NLpacker-fan Newbie

Hi Michelle,

Welcome to the wonderful world of gluten-free living! It's quite a transition, but the best news is that it becomes second nature once you get the swing of things. Don't think about what you're giving up, but what you're getting in return.

My first advice is to visit the following blog: Open Original Shared Link

Shauna is the name of the woman who writes it and she has some inspiring words & recipes for everyone who is diagnosed with Celiac. She also has a load of fabulous links to check out for more information and she's written one of the best books on the subject, as it's from a very personal point of view.

Get friendly with your local health food store, as they often carry gluten-free items.

Best of luck! :)

Janel

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

      Help I’m cross contaminating myself,

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

      What are Celiac Disease Symptoms?

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof


  • 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
      @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.