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

Does This Sound Like Celiac?


wrv2486

Recommended Posts

wrv2486 Newbie

Hey everyone..I am a bit frustrated and thought I'd see what all of you thought.

For years I have been back and forth getting medications for acid reflux, stomach ulcers, gallbladder problems, etc. However, nothing helps for very long and all of the tests for these problems have come back okay. I still have symptoms and they have been getting worse.

I am tired all of the time. I don't just mean a little, I mean super exhausted. This has been going on for years.

As soon as I eat I start to get a stomach ache and nauseated and feel like the food wants out. The symptoms persist and the pain gets worse after I eat. However, the aches and pains are pretty much always there. I'm also really bloated in my stomach and I notice this has gotten worse. The nausea is basically there all of the time, almost like being carsick but worse. I have been sick constantly, six or seven times in the past couple of months. I basically catch anything that goes around, way more than anyone else I know. I generally feel pretty weak or feverish anyway.

I get dizzy a lot, especially after I eat, or I get kind of foggy. Everything almost seems kind of dim or out of focus, like dreaming. I also have constant headaches (sometimes pounding) and rashes. The doctor thinks it's just eczema but they keep coming back. I also have this ridiculous appetite. I could basically eat anytime, but when I do I feel awful. I basically dread eating because of the symptoms that pop up immediately.

I have been lactose intolerant my whole life so what I can eat is already restricted. I was on the Paleo diet for about a month once (you basically eat fruits, vegetables, and meat) and I noticed my symptoms were greatly reduced.

Anyway, does anyone have any thoughts on this?

Thank you!!

Whitney


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi and welcome to the forum.

So all your sufferings and symptoms brought you here because you figured out gluten could be a problem for you, when none of your doctors ever thought of it, right?

You could very well be right. Your symptoms are pretty classic celia/gluten sensitive symptoms, just not the ones the doctors have been taught. You should ask your doctor to run a fujl celiac panel of bloodwork -

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (GDP)

Total Serum IgA

since this is the first basic screening test for celiac. Your lactose intolerance is potentially significant since the enzyme lactase is produced in the area of the small intestine that is damaged by gluten. I figured out my lactose intolerance long before gluten, too. I hope you have a good primary care doctor who will order these tests for you. You do not have to go go to a GI to get them done. Let us know how things work out. By the way, it is a good practice to always get copies of your test results from the doctor for your own use. :)

wrv2486 Newbie

I just got a new doctor. I have another symptom I forgot to mention. I get these episodes where I can feel like my blood sugar is dropping. It's pretty mild at first but when it first comes on I start to get weaker and weaker until I can't focus or pay attention to what's going on, I start to get dizzy and start pouring sweat. If it gets bad enough I can't even walk or move. I have to shove food in until it goes away. So once this started happening almost every day, I called every doctor I could until someone had an opening. He kind of mentioned celiac and ran some blood tests but I haven't heard anything yet.

Thanks for your help, I will definitely keep the results.

ravenwoodglass Mentor

You do sound like you could be one of us. Make sure you keep eating gluten until your testing is done. When your done with testing give the diet a good strict try no matter what the results as false negatives are not uncommon.

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.