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

Would You Wait For Endoscopy Or Schedule It Sooner?


carecare

Recommended Posts

carecare Enthusiast

I had my 18 yr old's appointment today ..with the ped GI dr. She's scheduled for her endoscopy Dec. 20...my boys are scheduled on the 16th. I mentioned how my boys have been suffering from day one of going back on gluten 10 days ago. He asked if I thought we'd make it until Dec. 16th or not. I said it's certainly difficult knowing one is having daily stomach pain and fatigue and the other is daily muscle pain, canker sores and fatigue. He said if it's too difficult to call and try getting them in sooner for the endoscopy. I'm just worried that if we do it sooner the chance of seeing any damage will be less likely. So we have 3 choices. Call in for an endoscopy sooner than later, wait until december or just call it off. He definitely seems like a doctor who unless it's a positive celiac biopsy that it's not that serious of an issue. I asked if tests were negative yet we know gluten contributes to the ill health of the kids would schools see that as something they have to accommodate. He said it depends on the school/college. We'd have to call and see what they'd do for someone labeled gluten intolerant vs celiac as he said "gluten intolerance" isn't looked at as much of a medical issue and colleges usually don't accommodate like they would for someone with celiac. That really is crazy to me..be we do know that someone who is gluten intolerant can be just as sick from gluten as someone labeled celiac. Grrr...


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



Celiac.com Sponsor (A8-M):



cahill Collaborator

I had my 18 yr old's appointment today ..with the ped GI dr. She's scheduled for her endoscopy Dec. 20...my boys are scheduled on the 16th. I mentioned how my boys have been suffering from day one of going back on gluten 10 days ago. He asked if I thought we'd make it until Dec. 16th or not. I said it's certainly difficult knowing one is having daily stomach pain and fatigue and the other is daily muscle pain, canker sores and fatigue. He said if it's too difficult to call and try getting them in sooner for the endoscopy. I'm just worried that if we do it sooner the chance of seeing any damage will be less likely. So we have 3 choices. Call in for an endoscopy sooner than later, wait until december or just call it off. He definitely seems like a doctor who unless it's a positive celiac biopsy that it's not that serious of an issue. I asked if tests were negative yet we know gluten contributes to the ill health of the kids would schools see that as something they have to accommodate. He said it depends on the school/college. We'd have to call and see what they'd do for someone labeled gluten intolerant vs celiac as he said "gluten intolerance" isn't looked at as much of a medical issue and colleges usually don't accommodate like they would for someone with celiac. That really is crazy to me..be we do know that someone who is gluten intolerant can be just as sick from gluten as someone labeled celiac. Grrr...

how long were the boys off gluten?? Being gluten free for even a short while can effect endoscopy results.

carecare Enthusiast

They were off of gluten from the beginning of August until the later part of September. Maybe a month and a half. Yes, that is why I was concerned about making sure they are on it long enough to show any damage. It's hard to believe how once off gluten...then back on it...how much more severe the reaction becomes. Well, certainly for my boys.

how long were the boys off gluten?? Being gluten free for even a short while can effect endoscopy results.

mushroom Proficient

They were off of gluten from the beginning of August until the later part of September. Maybe a month and a half. Yes, that is why I was concerned about making sure they are on it long enough to show any damage. It's hard to believe how once off gluten...then back on it...how much more severe the reaction becomes. Well, certainly for my boys.

Yes, that is a problem because the reaction can be so much worse. If you are determined to go for the biopsy I would not push for a sooner appt. since even six weeks is a dubious amount of time for a positive test :(

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

    5. - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748

    Kundrey
    Newest Member
    Kundrey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.