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

Rookie Trying To Cope.. Think Gluten's The Culprit..


LundqvistSaves

Recommended Posts

LundqvistSaves Rookie

Hello everyone,

Please forgive me if this isn't the proper place to post, but I'm a 26 y/o male and I've been sick for the past year with no help from three different gastroenterologists. I think it might be gluten, but my test came back negative for celiac's, so perhaps just an intolerance? My main symptoms are a lot of gas, GERD, overall crappiness, fatigue, lack of sex drive, depression, and mostly a cramping pain in my upper stomach right below my ribs. This seems to be the most prevalent, along with a crazy bloating. I've been taking Nexium which has helped with heartburn, but that's about it. I also started taking this probiotic called VSL#3. It's really strong, take a look at it if you aren't familiar. I can't tell much yet from it since it's only been a week. I've also been unresponsive to any IBS meds my doctors have tried on me, so that leads me to think maybe it is gluten causing the trouble.

I went gluten-free back in October for about a month, but I couldn't tell if I was feeling any different. Unbeknownst to me, I was also consuming potatoes/french fries once a week unaware that they could contain gluten, as well. So, I'm really not sure what else to do. I've decided to go gluten-free again, and started about 4 days ago.

I'm looking to feeling better and I hope going gluten-free helps. It's put a lot of strain on my relationship. Some days I just don't know what to do anymore. I miss having fun with friends, feeling well enough to work out, and just feeling good about myself. I've also gained 20 pounds. Has anyone else had any similar situations? I hope maybe I can get better within a month..

Thanks a lot, everyone.


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



Celiac.com Sponsor (A8-M):



andrewp Newbie

Man Im 26 this year and for the last year have been trying to cope with the same s$#& as you have. Its hard. These days its enjoying the small things that seem to keep getting harder and harder. Summer time hits and you wanna have a beer and bbq.....CANT. I know what you mean by the relationships and depression hitting....I assumed it was just the great paying, but totally s$#&ty job i hate working that i was doing...now it seems to be gluten this and gluten that.

Hang in there man...for me 4 years ago this wasnt a problem... im hoping a new job will settle more nerves down and i wont be rocking a crazy schedule and be able to eat properly.

Thats what the majority of this is...eating healthy...and then theres the shampoos and soaps and stuff you gotta use differently!

But once again hang in there! Im in the same boat as you....frustration and panic attacks more severe than ever now but it will pass!

IrishHeart Veteran

First of all guys, you can have beer and BBQ, it just has to be gluten-free. ;)

Welcome to the Forum!

Your raise a lot of questions. Let's see if I can help a little and other members can chime in. This is an amazing group of knowledgeable and supportive people.

Your symptoms sure sound gluten-related and negative test results do not automatically exclude celiac or NCGI. Many of us tested negative.

IBS is a common label given to a set of symptoms. We joke on here that it stands for the doctors' thinking: "I Be Stumped"

Many of us heard that, too.

GERD and IBS? I had those miserable symptoms for 25 years. No meds ever helped. Since DX and being gluten-free, they are GONE.

Regular Potatoes are gluten-free.

French fries, however, made in a fryer that is used for frying breaded products are not okay, as they will be cross-contaminated.

Taking a probiotic is a very good idea.

Unless you have a contact wheat allergy, too and DH (Dermatitis herpetiformis) you do not need to excessively worry about shampoo or topicals. Some people say they have reactions to wheat protein in these products, but the majority do not. I avoid them personally, but that's just me.

Be careful of your lipstick, though as that may get in your mouth. :D This goes for kissing gluten-eaters too. They should brush their teeth before getting too "involved". :)

Instead of writing a giant post again, :lol: may I direct you to the Newbie Info 101 thread in this section (COPING) and see if any of that information is helpful to you?

Best wishes.

It takes a lot longer than a few weeks to see symptom resolution. You'll have to be patient. Hang in there.

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

      What are Celiac Disease Symptoms?

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?


  • 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
      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.