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

Diagnosed A Week Ago

DakotaRN

By DakotaRN
in Coping with Celiac Disease

Recommended Posts

DakotaRN Newbie
DakotaRN
Posted

I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted

Hello! Welcome to the forum.

Believe it or not, things are extremely easier as time goes by. Feel free to ask anything you want.

Meline

weeza Newbie
weeza
Posted

I feel your pain. I too am new to this. About a month now. Some of my symptoms are gone but some remain. I am also trying to turn this into a positive by changing my attitude. We can go on this journey kicking and screaming or choose to accept and find it an adventure to better health. Good luck to you.

wschmucks Contributor
wschmucks
Posted

Welcome, this board REALLY helps. I would feel so lost without it. The next few months are going to be hard. Just read as much as you can, dont eat out at resturants and try to eat as much whole food as possible so you dont get glutened. I got glutened probably every week for the first 6 weeks...then it stopped....and i got better at it. Try to be patient with yourself, do your best, and remind yourself that this is going to get better. One day you'll wake up and realize you just do it all automatically (im not there yet--only 3 months in...but thats what i tell myself).

If you have any questions ask away, and dont be afraid to call the #s on teh back of boxes.

ravenwoodglass Mentor
ravenwoodglass
Posted

It will take some getting used to but you have found a great place for info and support. Welcome to the family. Almost everyone has some ups and downs and some of us who experience the neurotoxic effects can even go through a withdrawl. Hang in there and you may find you feel better than you ever remember soon.

Make sure to encourage everyone in your family to at least get the blood test done, even if they don't think they have symptoms.

cat3883 Explorer
cat3883
Posted

I have been gluten free for 3 1/2 months now. Wow I feel so much better. But the first few weeks were a little rocky for me. I had insomnia and headaches. After that I felt so much better and still do. I am thankful that I can control my disease by what I put in my mouth. Other people arent as lucky with their diseases. Good luck to you. You will find soooo much information on this forum

Klauren Apprentice
Klauren
Posted

Hey, I was diagnosed about a week ago too. I hope we both figure this out and heal quickly! I have been asking a lot of questions here and fingers crossed some of the veterans will give me feedback. I have also spent a lot of time researching on the internet and talking to others in my social network that have Celiac. I have been mentioning it to everyone I talk to because I am on a mission to raise awareness and if I help even one person, I will be thrilled. Through talking to people I have learned a lot and I find everyone with knowledge is very willing to share. So my suggestion is tell people in your life and you are likely to find your way to others who have been living gluten free and can give you some pointers. Some of the people I have met this way - through friends - are offering to take me shopping and show me how to buy foods that are gluten free. There is a network of tasters and experts on this forum and probably near you.

Good luck! Keep me posted on your progress. Best, Kim

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

Celiac.com Sponsor (A8-M):


Mel is well Newbie
Mel is well
Posted

Hi,

I was diagnosed about 3 weeks ago. It really stinks. I feel your pain. I have had no digestive symptoms, but was having numbness in my face and arms, and muscle cramping all over.

I'm so tired of people saying, "Well, you'll probably lose a lot of weight!" (I'm not overweight). As if they think I'm now on some sort of great Atkins diet! I'm learning how to eat, but I think I end up eating gluten about every other day. Today I went to Taco Bell for lunch. I ordered 3 hard corn tacos, thinking I was being smart. Well, I found out they were full of gluten, after I gobbled them down. Oh well, ya live ya learn. Anyway, I've found a few things that help:

1. Check your local library for the book: Celiac Disease, The Hidden Epidemic. This is a great book for info on all areas of this illness.

2. Ener-G Pizza Crusts - You can order them off of (Company Name Removed - They Spammed This Forum and are Banned) and get them a lot cheaper than the health food stores, plus no shipping or tax. They are soooo good. The thought of having no more pizza was one of the most depressing things for me.

Good Luck!!!!

EazyE Newbie
EazyE
Posted
I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.

Hi, I was diagnosed almost a month ago now and in some ways it's getting easier and others much more difficult. I'm fine at home, I'm prepared and know what is safe. And I am feeling much better. So I'm hoping my intestines are starting to heal. But. . . going out, work and to restaurants, UGHHHH! I feel like I am some gluten addict :) People are eating homemade cupcakes, doughnuts, pizza, and beer! I want it so bad ! I keep trying to say positive thoughts and remind myself that I am in control of this disease. And people with cancer would love to just be able to not eat certain things and be well. But it's still hard, I still want that cupcake. . .

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

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

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

      Methylprednisone treatment for inflammation?

      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...
  • 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

    • 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.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      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.