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

Endoscopy Gluten Challenge


kylee

Recommended Posts

kylee Newbie

Although I have just signed up and this is my first post, I've been referring to this site for the past couple of months. After recently being diagnosed with celiac from the results of my blood tests, my doctor has referred me to a GI in order to confirm the diagnosis. My GI has scheduled an endoscopy and told me to eat gluten for the week before the procedure. Is eating gluten for one week enough to do the damage to diagnose celiac? She said typically the gluten challenge before an endoscopy would last three weeks but because I feel so sick and miserable after eating gluten she cut it down to one week. From what I've read I am a little skeptical that one week is enough time. 

Also, I had been on a gluten free diet for three months prior to my blood test. I began eating gluten in order to have my blood drawn but ended up really sick and changing my appointment to the next day (so I only ate gluten for one day before getting my blood drawn). Would my IgG and IgA levels have been higher if I had eaten gluten for a longer period than just the night before? My doctor said they were in the 30's (I don't really know what this means but I know it indicates less sensitivity than levels in the 100's). 


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



Celiac.com Sponsor (A8-M):



Missingbeer Rookie
3 hours ago, kylee said:

Although I have just signed up and this is my first post, I've been referring to this site for the past couple of months. After recently being diagnosed with celiac from the results of my blood tests, my doctor has referred me to a GI in order to confirm the diagnosis. My GI has scheduled an endoscopy and told me to eat gluten for the week before the procedure. Is eating gluten for one week enough to do the damage to diagnose celiac? She said typically the gluten challenge before an endoscopy would last three weeks but because I feel so sick and miserable after eating gluten she cut it down to one week. From what I've read I am a little skeptical that one week is enough time. 

Also, I had been on a gluten free diet for three months prior to my blood test. I began eating gluten in order to have my blood drawn but ended up really sick and changing my appointment to the next day (so I only ate gluten for one day before getting my blood drawn). Would my IgG and IgA levels have been higher if I had eaten gluten for a longer period than just the night before? My doctor said they were in the 30's (I don't really know what this means but I know it indicates less sensitivity than levels in the 100's). 

Hello ! I'm also new to this whole thing so haven't got much to contribute unfortunately, but there are others out there with answers! 

Recently I've had a negative biopsy. I told my doctor I wouldn't have been eating much gluten before the endoscopy, but he said this is irrelevant and if I was celiac the test would still be positive if I had little to no gluten in my system.

I'm interested to find out which is true, does a large amount of gluten need to be consumed before the test or should it show regardless? 

squirmingitch Veteran

Open Original Shared Link

cyclinglady Grand Master
10 hours ago, kylee said:

Although I have just signed up and this is my first post, I've been referring to this site for the past couple of months. After recently being diagnosed with celiac from the results of my blood tests, my doctor has referred me to a GI in order to confirm the diagnosis. My GI has scheduled an endoscopy and told me to eat gluten for the week before the procedure. Is eating gluten for one week enough to do the damage to diagnose celiac? She said typically the gluten challenge before an endoscopy would last three weeks but because I feel so sick and miserable after eating gluten she cut it down to one week. From what I've read I am a little skeptical that one week is enough time. 

Also, I had been on a gluten free diet for three months prior to my blood test. I began eating gluten in order to have my blood drawn but ended up really sick and changing my appointment to the next day (so I only ate gluten for one day before getting my blood drawn). Would my IgG and IgA levels have been higher if I had eaten gluten for a longer period than just the night before? My doctor said they were in the 30's (I don't really know what this means but I know it indicates less sensitivity than levels in the 100's). 

Not true.  I was barely positive on the blood test, yet biopsies revealed a Marsh Stage IIIB (Moderate to severe damage).   Antibodies can take months to build up in the bloodstream.  That is why leading celiac disease experts recommend that you be on a gluten diet for 8 to 12 weeks prior to a blood draw.   I am concerned that your doctor "said".  Please get and maintain copies of your lab results.  It might come in handy if you see another doctor in the future.  ?

If you need that firm diagnosis, consider doing the challenge longer or accept the results that may occur (even if negative, consider yourself a celiac....and will your GI do the same?????). Something to discuss with your GI.  

You are in a tough spot.  I wish things were easier for you.  

Gemini Experienced

If you were gluten free for 3 months before the blood draw and it still came out positive as you stated, then your antibodies must have been really high before you originally started the gluten-free diet.  Too bad the blood work wasn't done then. However, all is not lost. If the numbers of whatever testing they did were in the 30's, then that is a positive for Celiac Disease.  It would be helpful to know what tests were run. 

Cyclinglady is correct in that the levels on your blood work do not correlate to the amount of damage in your intestines. You can have the testing come back negative to barely positive and have a lot of damage done.  That is the funny way that the immune system works.....results can vary wildly between people.

You still could be showing damage on the scope at this point but I think if it does come back negative, you need to be gluten free.  You get really sick from eating gluten and you had positive blood work.  If you let them convince you that you are negative for Celiac if the biopsy comes back that way, then you will continue to be sick. I would not continue to eat gluten for 3 weeks just to have a positive scope if my blood work were positive.  In fact, I was diagnosed via blood work only because I failed the testing by large numbers (more than 10X the normal limit) and like you, I got violently sick form eating the stuff.  11 years later, I am doing great and feel better than when I was younger. You'll get there too!

Archived

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

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

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

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,410
    • Most Online (within 30 mins)
      7,748

    Marilyn Gingras
    Newest Member
    Marilyn Gingras
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.