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-Endo Freak Out


mbadger2

Recommended Posts

mbadger2 Newbie

I am going in for an endoscopy first thing tomorrow and my nerves have grown arms...lots of them. I am nervous about the procedure but I am sure it will be fine. The nurse called today and said I would be "absolutely comfortable." I am afraid that the blood test will be confirmed but I am equally scared that it won't. I am scared that they will find something that we aren't even looking for (maybe the watermelon tree mom always said would grow if I ate the seeds?). Anyway, maybe I should have let the positive blood test be enough (tTG IgA was 133 with >19 positive). My thinking is that I should know if there is damage and my hope is that, if I get a confirmed diagnosis, my kids can be screened and diagnosed by blood, saving them from the endoscopy.

On a side note, I am walking around my kitchen eating some of all the food I love (literally ALL of it) that I may not be able to have again. I am so totally uncomfortable and my stomach feels like it has pop rocks in it. Necessary? No. Justified? I think so. :)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

mbadger2 Newbie

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.

Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.

The endoscopy was a total breeze. I was OUT like a light and don't remember a thing. The doctor said that he did not see any obvious damage but will know more once the samples are looked at. He did says that, based on my blood work, he feels stronly that this is celiac and I should remove gluten. This doctor was great. He said his dad has celiac and this makes me think that he is more aware than others (like every other doctor I have ever had). I feel lucky to have found him and my PCP. For my entire adult life my doctors have told me that I am stressed and depressed and need to be medicated. Every symptom I have was blamed on depression. I started saying no to medication years ago because it never really helped. I finally found a doctor that listens and here we are. There are good ones out there, you just have to keep looking!

Angel M Rookie

So glad your EGD went well. I cried like a baby when they took me back. It really wasn't bad at all, but I was terrified since I've never had any kind of procedure done. My doctor diagnosed me based on a blood test as well. The only damage found in me was inflammation. The doctors don't always find damage with a biopsy. You'll likely feel a lot better once you start gluten free. It can be very difficult at times, but I also find it to be quite fun when I try new recipes that taste fantastic or when I find something new at the grocery store!

beachbirdie Contributor

The endoscopy was a total breeze.

So glad everything went smoothly. Sounds like you have an amazing doctor as well. I think people get really good care from docs that have a personal stake in a condition! How rare to find one with celiac in his family. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,996
    • Most Online (within 30 mins)
      7,748

    Sasha Bondarev
    Newest Member
    Sasha Bondarev
    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

    • JoJo0611
      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
×
×
  • 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.