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

Pre Diagnosis - Eating Gluten For The Test Is Killing Me

terrymarie

Recommended Posts

terrymarie Newbie
terrymarie
Posted

I am having an endoscopy on Monday and I had a celiac panel done this week. They are sending it to promethius labs. I've had to eat gluten for the past 8 weeks for the test. Every time I eat it, I have heartburn, overwhelming sleepiness, congestion, spaciness, and my left lower back is killing me. The heartburn has made me feel like my throat is closing 'cause its raw from the acid. My doc is convinced I may have celiac or at least gluten intolerance from my reactions and since some stomach cancers and thyroid disease run in my family. I have Hashimotos. Is back pain a possible side effect? I feel pretty bad, but should I continue to eat gluten until my May 11 results appointment or can I stop after the endoscopy?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

IMHO you should stop now. The challenge has already shown that you have a problem with gluten. You body has clearly shown you. Please even if the biopsy is a false negative do not keep eating afterwards. Your body, believe it or not, has better diagnostic powers than the Doctors.

terrymarie Newbie
terrymarie
Posted
  • Author

Thank you. At first, I thought of this as the farewell tour to gluten and ate stuff I thought I missed. Well, after my challenge reactions my memory has been jogged and I am back to looking at gluten products with fear and anxiety. My friends see delicious soft whole grain bread and wonderous desserts, but I see intense misery and can't wait to go back to my world of no bread. A leaf for a sandwhich isn't so bad and I like my rice pasta. Glutenous pizza is vastly over rated from my prospective:) Really, by Saturday I have to stop eating so as prep for the colonscopy they are doing too so I guess it won't make a difference.

gfp Enthusiast
gfp
Posted
IMHO you should stop now. The challenge has already shown that you have a problem with gluten. You body has clearly shown you. Please even if the biopsy is a false negative do not keep eating afterwards. Your body, believe it or not, has better diagnostic powers than the Doctors.

I'd agree if she wasn't 7 1/2 weeks through 8....

20/20 hindsight is great :D

@terrymarie:

Regardless of the biopsy INSIST on a full celiac blood panel...

Feel pretty bad, but should I continue to eat gluten until my May 11 results appointment or can I stop after the endoscopy?

I see no reason to continue... honestly if you'd asked 7 weeks ago I would have said get blood tests... stop as soon as they are +ve...

Make sure you get them now though.... if the biopsy is by some chance -ve... or even debatable you don;t want to go through this again....

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
    2. McKinleyWY
      - McKinleyWY replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Accuracy of testing concerns

      I sure appreciate the information. I knew there had to be gluten consumption for the blood test, but I did not realize that also applied to biopsies. Thank you so much for that nugget of knowledge. I look forward to learning more as I dive into this website and the collective knowledge, experience, and wisdom from those who have gone before and/or those...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    5. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,245
    • Most Online (within 30 mins)
      7,748
    Christine Ranalli
    Newest Member
    Christine Ranalli
    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

    • xxnonamexx
      Healthy Gluten Free Foods low sugar that you found?

      By xxnonamexx · Posted

      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      I sure appreciate the information. I knew there had to be gluten consumption for the blood test, but I did not realize that also applied to biopsies. Thank you so much for that nugget of knowledge. I look forward to learning more as I dive into this website and the collective knowledge, experience, and wisdom from those who have gone before and/or those who are just beginning the journey like me. Marilyn 
    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
×
×
  • 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.