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 Scheduled

Duhlina

Recommended Posts

Duhlina Apprentice
Duhlina
Posted

So, I went and saw the Nurse Practitioner at the Gastro Dr.'s office yesterday (if I had to wait to see the actual doctor it would have been several months). My blood test levels all came back as 'low positive' for celiac, so she wants to do an endoscopy with a biopsy to confirm. I have been gluten free for a little over two weeks now and the test is another week and a half away (9/26). I asked if I needed to start eating gluten again before the test and she surprisingly said no?? She said it takes a good 6-8 weeks for things to calm down in there so they should still be able to tell with a biopsy. By the time of the biopsy I will be gluten-free for almost 4 weeks.

I'm not so sure I agree with that from what I've read? I'm not thinking I want to go out on a bender and ingest gluten with every meal, but I think I should be eating SOME?!!?! Although I have been dreaming of that bender....hahaha....pizza, beer, fried calamari, fried chicken, big doughy hard rolls...mmmmm......

What say you?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I think you should go back on gluten until the biopsy to give you the best chance of an accurate result. Be aware you could still have a false negative. You may find that even though you haven't been gluten-free for long that adding it back in makes you very ill. Let them know if it does.

Roda Rising Star
Roda
Posted

I say go back on it too. A month in some people could make a difference. Keep a log of your symptoms and reactions though in case it gets too bad and you can't make it eating gluent until the scope. Or you can use it as diagnositic info.

ravenwoodglass Mentor
ravenwoodglass
Posted

Also make sure they take multiple biopsies, I think 6 to 8 are advised not the one or two that some doctors do. And they should come from different areas of the small intestine.

Duhlina Apprentice
Duhlina
Posted
  • Author

Also make sure they take multiple biopsies, I think 6 to 8 are advised not the one or two that some doctors do. And they should come from different areas of the small intestine.

Yeah, from the sounds of what she explained it gave me the impression they would be doing one. Will they be offended if I insist on more? I don't want to tell them how to do their job, but I also don't want it to all be for nothing!!!

Roda Rising Star
Roda
Posted

Yeah, from the sounds of what she explained it gave me the impression they would be doing one. Will they be offended if I insist on more? I don't want to tell them how to do their job, but I also don't want it to all be for nothing!!!

This is how I put it to the doctor that did my oldest son's scope/biopsy. If she wasn't going to take the minimum of 6-8 samples we weren't going to bother with the exam at all! I told her this when she came in the room to talk to us before going back. His biopsy was completely normal, but we chose to do a trial of gluten free anyway.

Duhlina Apprentice
Duhlina
Posted
  • Author

Well, I've been eating a little bit of gluten this week since the endoscopy is scheduled for Monday and, after being gluten free for two weeks, I notice the following:

1. My first ingestion of gluten (fried calamari) gave me a migraine and I've had a low grade headache all week.

2. I haven't had any stomach 'issues' other than my stomach seems to make strange noises at the most inopportune times. But it hasn't made me sick to my stomach at all, which surprises me.

3. My 't-zone' on my face is back to being an oil slick.

4. My depression is creeping in again.

5. I'm not sleeping as well.

6. The bloating is back, but not nearly as bad as it was when I was full gluten.

7. The gluten-y things that I previously loved only taste 'meh' to me now. I can definitely live without them and be fine with it.

8. EVERYTHING, and I mean EVERYTHING, aches. I feel like I'm walking like my 94 year old Grandmother used to walk and I'm only 43!

It's obvious to me that gluten free is the way to go, for me, regardless of what the biopsy says!

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

Celiac.com Sponsor (A8-M):


lucky28 Explorer
lucky28
Posted

Hi, I was miserable the last few weeks before my biopsy. I really glutened it up! I tried to think of all the stuff I loved or wanted to try and ate it all. I remember how horrible I felt but kept on because I really wanted to get the most bang for the buck so to speak, from my biopsy. My blood work was very low positive, only the ttg was slightly raised, and I tested positive for the dq2 or 2.5 gene. So I really wanted to push it over the edge, if I had it I wanted it to show on biopsy. Why spend the time and the money if it's only gonna be 1/2 arsed? Try to keep it up until your appt!

navigator Apprentice
navigator
Posted

I originally refused the scope and biopsy( May this year) as I didn't want to go back on gluten. However,my G.P.(who is very good and diagnosed me on blood results and my daughters having coeliac))persuaded me In June that it would be in my best interest to be referred to GI. I've had my appointment and I'm getting it on 26th Oct and the GI requested that I try to eat gluten every day until the scope. I have been back on gluten for two and a half weeks. I do feel terrible and could not have done this if I hadn't resigned from my work at the beginning of June. However, as I'm at home I've decided that I'm going to stick with it. I figure if I'm going to go through with having the scope I want the best chance to get a positive result. Try to stick with it.

Duhlina Apprentice
Duhlina
Posted
  • Author

Hi, I was miserable the last few weeks before my biopsy. I really glutened it up! I tried to think of all the stuff I loved or wanted to try and ate it all. I remember how horrible I felt but kept on because I really wanted to get the most bang for the buck so to speak, from my biopsy. My blood work was very low positive, only the ttg was slightly raised, and I tested positive for the dq2 or 2.5 gene. So I really wanted to push it over the edge, if I had it I wanted it to show on biopsy. Why spend the time and the money if it's only gonna be 1/2 arsed? Try to keep it up until your appt!

I'm trying! I SO want to have my favorite beer, but I just can't seem to do it. Maybe this weekend. What were the results of your biopsy? I'm really curious to know what they are going to see/find come Monday. I too tested low positive on the blood work.

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. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      0

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    3. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    4. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    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

    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
×
×
  • 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.