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

Considering Testing

nicole0392

By nicole0392
in Coping with Celiac Disease

Recommended Posts

nicole0392 Newbie
nicole0392
Posted

I have been dealing with stomach issues for 15 years. I have had every test imaginable done and have received no answers as to why I am sick every single day. With the love and support of my wonderful fiancee who doesn't want to see me sick daily he has spent hours on the internet trying to come up with answers. We are considering celiac disease. I eat a lot of gluten everyday and i am not getting any better. My only problem with this disease is that I do have random days where i feel ok and still eat gluten. is that common? also do I have to get tested or can i just go gluten free? my symptoms are bloating, stomach pain, loss of appetite, headaches, light headed feeling, nausea, vomiting, constipation and sometimes diarrhea, gas, FATIGUE. any suggestions or advice would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Welcome!

All those sympotms could be celiac symptoms.

No, you don't have to do testing, but it might be to your benefit to so. It is just a simple blood test. At the very least I think you should get your vitamin levels checked and your thyroid.

If you do decide to go gluten free, make sure you get all your testing done first.

Skylark Collaborator
Skylark
Posted

Random days when you feel what you currently think is OK are common. Many celiacs feel so much better off gluten that they realize their OK days were actually still sort of sick. Yes, celiac could easily explain your symptoms.

Do get tested. It's good to know whether you are celiac, or just one of the millions of people who gets sick from gluten. The first stage is just blood tests and can ordered by your GP. You can make the decision about whether to go on with an endoscopy with your doctor's help depending on what the tests show.

nicole0392 Newbie
nicole0392
Posted
  • Author

Thank you for the replies. I think I will get my blood drawn. Although this is not an easy task for me because i have small veins that move around. In the past month i have had blood drawn 5 times. do they run specific blood tests for celiac disease? also i had an endoscopy done about a year ago. do they have to specifically look for something or would they have seen the signs with that test? I am so ready to start feeling better. I never have an energy and the constant headaches and stomach pains are getting old but I am terrified to give up my bread, pasta and candy. I tried gluten free bread once and it was terrible. how do you guys do it? should i have my son tested as well?

mushroom Proficient
mushroom
Posted

Yes, there are several different blood tests that they run looking for antibodies. They would not find these unless they were specifically looking. Much the same is the case of endoscopic biopsies. Sometimes the celiac damage is visible to the naked eye, but it is usually detected by microscopic examination of the biopsy samples. Normally five or six samples are taken because the damage is not uniform throughout the small intestine and is easily missed.

You do not have to give up bread, pasta and candy when you give up gluten, nor cookies and cake. There is some very tasty gluten free pasta around, Udi's makes very good bread, and there are lots of gluten free candies. Now admittedly some gluten free products are nasty (there is a thread running on the forum on our least favorites) but there are many very fine gluten free processed products out there, and a zillion recipes on the internet for making your own delicious treats.

If I were you I would definitely ask them to try and find one of your elusive veins and get the testing done. It may be negative, and it may even be a false negative :unsure: , but if it is positive you KNOW.

nicole0392 Newbie
nicole0392
Posted
  • Author

any tips on what to look for when reading labels? i am scared i will eat "hidden gluten." also how long was it before you noticed a difference?

mushroom Proficient
mushroom
Posted

Here is a link to a previous thread on detecting hidden gluten:

If you eliminate lactose as well as gluten initially, you should see a difference almost right away, fewer GI symptoms - bloating, cramping, diarrhea, etc.

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

Celiac.com Sponsor (A8-M):


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)

    • There are no registered users currently online

  • 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.