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


ellenk1989

Recommended Posts

ellenk1989 Newbie

Hi!

I recently got diagnosed with Celiac Disease. It has been a tough road. I had stomachaches so severe I thought I was going to die. My question for those who have had this a long time, does it get easier to handle? I am just 21 years old and like its so hard to go out because I am still not sure of what is "safe" or "unsafe". So far, I have completely eliminated gluten products and all dairy products but I still slip up like today, I ate at McDonalds and apparently their sweet and sour sauce has wheat.....BIG MISTAKE not reading the label. My other question: are there any restaurants that should def be avoided?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. It will get easier in time. McDonalds is one of the restaurants that you should be avoiding. In fact it is best to avoid restaurants all together for a bit unless they have a gluten free menu and even then it can be risky. You want to go with as much whole unprocessed food as you possibly can. You could so a search by naming the restaurant and putting the words gluten free in the search bar. If they have a gluten free menu you should find a link to it when the results come up. I know PF Changs has one and I think Outback does also. Since more of us are being diagnosed more restautants are getting the hang of how to feed us safely. There is a lot to learn about being gluten free. Read as much here as you can and post any questions you need to.

If you go to the home page here you will find a link to a list of safe and unsafe ingredients that may help a bit.

Emilushka Contributor

I've been diagnosed for only a month but I've been finding it easier and easier every day. The easiest thing I've found is to focus on what you CAN eat instead of what you CAN'T. It takes a lot of cooking, but even with just a toaster oven, microwave, and rice cooker you can make a lot of different things that will be gluten-free.

You can totally do this. It's a challenge and you really have to read EVERY label (wheat is SO SNEAKY), but you can totally do this.

Reba32 Rookie

Personally, I would avoid all fast food places entirely. They're not really set up for gluten free preparation (except a couple of pizza chains in Canada now, not sure about the US). I also stear clear of all buffets, and breakfast/pancake places (Denny's, IHOP, etc). Yes, they have gluten free options but it's all cooked on the same griddle, and for some odd reason they add pancake batter to their scrambled eggs and omlettes, so what you would think should be gluten free, really isn't.

For sit-down type restaurants either check their on-line menu or call before you go to find out if they can accomodate you. Don't just look for naturally gluten free options, but *ask* them if their preparation area/cooking area is also gluten free. And ask about "hidden" ingredients. Chicken may sound safe, but strangely some manufacturers inject whole chickens with wheat to plump it up, and some restaurants may use a dry rub with wheat flour on chicken, pork and beef.

I have had really good luck with restaurants, just by being very direct with the server. Tell them you cannot have any gluten containing products even touch your food. Be specific, most servers (and even most "chefs") won't know what gluten is. Tell them wheat, barley, rye, and oats and ask them to check the labels on everything that goes in or on. If you're ordering a steak, ask them how it will be prepared, and if anything else is cooked on the grill or cut on the surface that contains gluten. And get steamed veggies, not fries. Most fryers in restaurants are shared with the chicken fingers and fish fingers so the oil will be full of painful gluteny stuff.

It's better to call ahead, but in the real world, you can't always do this. Spontenaity happens. If there's nothing on the menu you can eat, find somewhere else to go.

I went out for lunch with a bunch of family one day at the local slots casino. I asked about the rotisseri chicken and the salad. The server went to the kitchen to ask the chef, and I was told that though both options are gluten free, their kitchen is not, so there is risk of cross contamination. However, because they were not the least bit busy, the chef was willing to scrub down the counter to prepare my meal for me. Had they been busy, I would have had to go hungry while I watched my Mum, Aunt & cousins eat.

I know in future to not eat there, because the chances of the same understanding chef being there, and not busy are slim.

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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.