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

Couldn't Tolerate The Gluten Challenge

Swansong

Recommended Posts

Swansong Newbie
Swansong
Posted

Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

Hi Swansong, and welcome to the forum.

Nothing! could have convinced me to resume eating gluten to get tested. The results of being gluten free were good enough for me. I don't give a hoot what the tests could have showed. You will find there are quite a few of us.

rinne Apprentice
rinne
Posted

Hi and welcome. :)

Add me to the list, the day the gastro suggested celiac as a possibility was the day I quit all gluten. I had known for years I had problems with bread and avoided it but I hadn't understood about gluten. The endoscopy was scheduled for five months after that and there was no way I was ever going to eat gluten again so I passed on it.

If you have been diagnosed with IBS for thirty years then you may have damage, it takes time to heal.

Is your doctor checking your vitamin and mineral levels, quite likely you will need to figure out how to bring them up and sometimes adding supplements doesn't work so well when our digestion is challenged. I suggest high quality supplements that come in a liquid form, B vitamins you can get through shots and if you have no energy that could make a huge difference.

I am glad you finally found a doctor willing to test for celiac, there is a strong possibility that you may have had it all along and not IBS which some say is simply a doctor's way of acknowledging, "I Be Stupid". :lol:

The blood tests for celiac are notorious for not diagnosing it. :o The endoscopy also may miss it as the damage may be spotty, the question is do you feel better when you don't eat it and it seems pretty clear that you do. :)

Swansong Newbie
Swansong
Posted
  • Author

Thanks for replying! I stayed up very late last night reading some of the topics on this FORUM, and it's nice to hear from others who have the same condition. When I first became acutely ill last July, I was terrified that I had crohn/colitis, because my symptoms were so similar. My son, who is now 30 years old, had his colon removed in 2003. He almost died from blood loss and infections, so I have seen firsthand the devastation of that disease. I was kind of relieved when they ruled out those diseases for me, but Celiace Disease is no picnic either.

I am currently investigating supplements, and appreciate the input about liquid supplements.

Gfresh404 Enthusiast
Gfresh404
Posted

Add me to the list as well. First year of college got really sick, lost almost 30 pounds, I was already a little underweight, 6-2 and 160lbs. Saw a GI, thought it might have been Celiac, so he tested for that. Before I got the results I went gluten-free and noticed some improvements but immediately stopped that after finding out the tests were "negative" for Celiac. If only I had known what I know now. Then had Endoscopy, no damage was found. After two months of messing with my diet, I started eliminating my problematic foods. Started with dairy and then eventually wheat and finally gluten. 6 weeks later of being gluten-free I had the full Celiac blood panel, negative of course. And they looked for DQ2 and DQ8, both negative again.

So regardless of what any test says, it is important to listen to your body. If gluten-free works for you, keep doing that, I know I will.

Keep in mind that our knowledge about this condition is still very limited.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Count me in for the non-diagnosis. I wouldn't be able to tolerate a challenge. But that's ok because my doctors take my gluten intolerance seriously even without a formal diagnosis.

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. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      1

      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 ...
    2. 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...
    3. 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...
    4. Scott Adams
      - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

      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 p...
    5. klmgarland
      - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis. I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t. Who knew tha...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • 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.
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.