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

Reactions

JessieFree

Recommended Posts

JessieFree Apprentice
JessieFree
Posted

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

A gluten reaction can be delayed, and some here can react up to three days later. That might be something to think about. There are also some celiacs that are non-symptomatic. They have no symptoms, but the damage does occure.

Celiac is not always about what you consume in your meals. Lipstick, lotions, shampoos, meds and scratched pots and pans, wooded spoons used prior to being gluten free can also cause problems.

I do not know how long you have been gluten free, but for many here, it has taken months to feel relief from a gluten free diet. There are way too many traps to fall into when you are first diagnosed.

It is really unrealistic for a very newly diagnoses celiac to go 100% - there is just way too much to learn. But it can be done with study and diligence.

Hope that can answer some of your questions. And welcome!!

Ed-G Newbie
Ed-G
Posted

For me, it depends. Sometimes I get a gluten reaction right away, and sometimes I don't seem to get any at all.

Ed in MD

Mickide Apprentice
Mickide
Posted

I have been walking through life with no idea I was Celiac or real symptoms from gluten. I just thought it was me, how my body was, never really thought anything was wrong (except losing 30lbs). It is actually my biggest fear about my recovery, that I won't know if I accidentally ingest gluten.

jacqui Apprentice
jacqui
Posted

After I was diagnosed my sis ter kept denying she had celiac b/c she did not have symptoms or so she thought. 10 mos. later she was + for celiac disease, anemia, osteopenia, vit. deficiences... Since gluten-free she is feeling much better and relized she did have symptoms after all but she just thought it was normal ie bloating to looking pregnant after eating-she just thought she ate too much...

She also became sick going gluten-free at first. Every "typical" symptom of celiac disease she had on a gluten-free diet!! :blink:

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

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. MoniqueCham
      - MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to ...
    2. HelenH
      - HelenH replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

      Thank.you both
    3. Scott Adams
      - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction becau...
    4. Scott Adams
      - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination wit...
    5. Scott Adams
      - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 m...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,550
    • Most Online (within 30 mins)
      7,748
    Franie Wehrung
    Newest Member
    Franie Wehrung
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • MoniqueCham
      Celiac Disease, Lymphocytic colitis and Bowel rupture

      By MoniqueCham · Posted

      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
      Malt vinegar

      By HelenH · Posted

      Thank.you both
    • Scott Adams
      Malt vinegar

      By Scott Adams · Posted

      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      Supplements for those Diagnosed with Celiac Disease

      By Scott Adams · Posted

      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      Celiac Disease, Lymphocytic colitis and Bowel rupture

      By Scott Adams · Posted

      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
×
×
  • 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.