Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

My Gluten Challenge


pdm1981

Recommended Posts

pdm1981 Collaborator

In my last post I told the story about how I had almost every possible test done and there was no sign of Celaic Disease that they could find. In fact, my diagnosis stems from a single blood test taken over six years ago. One test. I told this story in which some people said that I should ignore my new results and get new doctors and that they must be wrong. Well I've been eating gluten for a week today and haven't had any of the symptoms so far. When I say "eating gluten", that means eating sandwiches made from 4 Hawaiian Rolls. They taste great. All I've been taking is a probotic called Florastor. Now to be clear, I'm not saying that this is a cure for Celiac Disease. If you were properly diagnosed with celiac disease, taking this will not make you able to eat gluten. If you have celiac disease you need to avoid gluten at all costs. This means that I may have been misdiagnosed. All this time I thought I was being "glutened" might have been something else. I go for the breath test on the 15th and see the doctor on the 29th. We'll see how this goes but so far there is nothing to say as far as celiac disease goes. I know there a people that are going to jump right on this and think this is foolish to believe these doctors and I should stay on a gluten-free diet but I would be foolish to not want to definitely check all the boxes and find out for sure. I'm not changing doctors. I'm seeing it through to the end. Plus, the food is sooooo much better on this challenge than not doing it at all. I'll post all the results as they come in but here's what I got so far:

I have 1 blood test that says I have celiac disease taken over 6 years ago

I had a scope done 6 years ago in which they did no biopsy and things appeared normal

I have the genes for celiac disease which means I can potentially develope it in my lifetime

This year, I have had biopsies, blood, s$#&, scopes on each end, and soon to have a breath test, and so far, NO SIGNS OF CELIAC DISEASE. ( also I'm doing the gluten challenge with no diarrhea, vomitting, etc.,)  

So what are your thoughts?

 

 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
2 minutes ago, pdm1981 said:

In my last post I told the story about how I had almost every possible test done and there was no sign of Celaic Disease that they could find. In fact, my diagnosis stems from a single blood test taken over six years ago. One test. I told this story in which some people said that I should ignore my new results and get new doctors and that they must be wrong. Well I've been eating gluten for a week today and haven't had any of the symptoms so far. When I say "eating gluten", that means eating sandwiches made from 4 Hawaiian Rolls. They taste great. All I've been taking is a probotic called Florastor. Now to be clear, I'm not saying that this is a cure for Celiac Disease. If you were properly diagnosed with celiac disease, taking this will not make you able to eat gluten. If you have celiac disease you need to avoid gluten at all costs. This means that I may have been misdiagnosed. All this time I thought I was being "glutened" might have been something else. I go for the breath test on the 15th and see the doctor on the 29th. We'll see how this goes but so far there is nothing to say as far as celiac disease goes. I know there a people that are going to jump right on this and think this is foolish to believe these doctors and I should stay on a gluten-free diet but I would be foolish to not want to definitely check all the boxes and find out for sure. I'm not changing doctors. I'm seeing it through to the end. Plus, the food is sooooo much better on this challenge than not doing it at all. I'll post all the results as they come in but here's what I got so far:

I have 1 blood test that says I have celiac disease taken over 6 years ago

I had a scope done 6 years ago in which they did no biopsy and things appeared normal

I have the genes for celiac disease which means I can potentially develope it in my lifetime

This year, I have had biopsies, blood, s$#&, scopes on each end, and soon to have a breath test, and so far, NO SIGNS OF CELIAC DISEASE. ( also I'm doing the gluten challenge with no diarrhea, vomitting, etc.,)  

So what are your thoughts?

 

 

Any Celiac blood or biopsies taken while you have been gluten-free for six years should be negative.  You may not have Celiac, but those tests don’t mean that you don’t have Celiac.  After you eat gluten for a few months, you could test again if you want.  

pdm1981 Collaborator

Turns out the reason a biopsy wasn't taken the 1st scope 6 years ago is that everything looked normal. I'm still moving along with this gluten challenge and so far nothing has changed. The symptoms of these "flare ups" are still the same whether gluten is there or not. I actually improved slightly with the probotics (Florastor). The gas didn't go away but there wasn't nearly as much and I'm actually sleeping better. I had to stop it today because it's 1 week before the breath test. I have 1 gluten containing meal a day and I don't worry about CC anymore til this is over. Things that irritate my gut are pasta sauce and onions. Onions really kick my ass. Also things with a lot of garlic. Tomorrow I might just have a couple slices of real pizza. If not a restaurant then a kroger's 3 minute pizza.

What would you eat on this challenge?

10 hours ago, kareng said:

Any Celiac blood or biopsies taken while you have been gluten-free for six years should be negative.  You may not have Celiac, but those tests don’t mean that you don’t have Celiac.  After you eat gluten for a few months, you could test again if you want.  

 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,743
    • Most Online (within 30 mins)
      7,748

    gfreenc
    Newest Member
    gfreenc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Miso can be gluten-free, but it depends on the ingredients and how it's made. Miso is a fermented paste made primarily from soybeans, salt, and koji (a mold used for fermentation). Some varieties also include grains such as rice, barley, or wheat. Rice-based miso is typically gluten-free. Barley or wheat-based miso contains gluten and is not safe for those with celiac disease or gluten sensitivity. Even if miso doesn’t list gluten-containing grains, cross-contamination is possible during processing. Look for a certified gluten-free label to ensure safety. Check the ingredient list and packaging for terms like: "Barley" or "wheat" (contains gluten) or "Certified gluten-free" (safe for celiacs). Brands like Miso Master Organic offer certified gluten-free miso varieties, making it easier to find a safe option. If you’re unsure, opt for miso labeled as gluten-free and confirm with the manufacturer if needed. Always double-check ingredients to avoid any accidental gluten exposure. We have it on our forbidden list because in many cases it can be difficult to know for sure whether it's gluten-free. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.      
    • Scott Adams
      It sounds like you’re navigating a lot of testing and trying to make sense of your results. While I’m not a medical professional, I can share some insights that might help. A calprotectin level of 2500 is quite high and typically indicates significant inflammation in the gastrointestinal tract. This could be due to a variety of conditions, including celiac disease, inflammatory bowel disease (like Crohn’s or ulcerative colitis), or other causes of gut inflammation. The celiac testing results will be important to help rule in or out celiac disease as a cause. Your kidney-related results (stage 3a CKD and GFR readings) are worth discussing further with your doctor. While these levels indicate reduced kidney function, they don’t necessarily mean immediate issues, but they should be monitored closely, especially if there’s ongoing inflammation or another underlying condition contributing to it. As for the milk allergy testing, it’s good to have that information, as dairy can sometimes contribute to symptoms in people with celiac or other gut issues. While waiting for the celiac test results, it might be helpful to keep track of any symptoms you’re experiencing, especially related to diet, and share those with your healthcare team. It’s also worth asking your doctor about follow-ups for the kidney results to ensure you're addressing any potential contributors to inflammation or kidney function. I hope you get clarity soon from your test results. It’s great that you’re being proactive about your health, and you’re definitely not alone in this journey. Take care and keep us posted on how things go!
    • Scott Adams
      There is no way to know for sure when an autoimmune disease might be triggered in someone, and this is just a theory that you might want to bring up with your doctor if your dry eye issues are prolonged. Of course you may not have Sjogren's, but it might be worth checking into if your issues are ongoing.
    • aperlo34
      Would Sjogren’s only show up 1-2months after going gluten free? 😭😭😭😭
    • Scott Adams
      Great advice, as having one autoimmune disease makes you more vulnerable to getting others.
×
×
  • Create New...