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

New With Questions About The Egd


CeliacRN

Recommended Posts

CeliacRN Newbie

Hello! I just recently went to the doctor for all the symptoms I have been having for the past few months (with some) years for others and asked her if I could get tested for celiac. For one she didn't even know what it was and asked me to spell that for her, which was frustrating. I have a mom and sister who have both tested positive for celiac so I was pretty sure I knew what was wrong. She ordered the IgA test which came back positive with a value of 170. So she referred me to a GI doctor for an EGD. He couldn't see me until the first of December and I couldn't get the EGD until the middle of January! What a joke! So I called my doctor and told him that was unacceptable anad that I needed to be referred somewhere else where I could be seen immediately. In the meantime my symptoms have gotten way worse. Gas, bloating, stabbing stomach pain, constipation with loose stools, mind numbing fatigue, swollen lymph nodes and memory lapses. I decided to cut down to just having one meal a day that included gluten since I couldn't take the pain. I finally got in to see a GI this week (hallelujiah!) who told me that I needed an EGD and because I had cut down my gluten for 11/2 weeks I need to increase my gluten intake for the next two weeks. I had been starting to feel better and now in two days I am back to miserable and in pain and feeling awful. Is the EGD really that important? I can totally tell the difference when I eat gluten and when I don't and I have only read that the EGD is used to confirm that I have it. If I already know I do and feel better when I don't eat gluten so why should I continue torturing myself? I work in the medical profession and definitely see unneedeed tests ordered all the time. Sorry this is so long, I am just wondering if i is worth the pain to wait 2 more weeks to just get results for what I already know I have? Thank you or reading and any ideas are great appreciated.


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



Celiac.com Sponsor (A8-M):



beebs Enthusiast

Its really up to you what you prefer to do. Is a diagnosis important to you? It is to me and I didn't get one, I wish I'd just had the biopsy when I had the chance. But there are lots of people on here who are comfortable knowing that gluten affects them badly.

If you decide not to and think that you can do a gluten challenge at a later date, just be aware that sometimes after being gluten-free for awhile your symptoms when you have gluten can be so much worse than before.

ravenwoodglass Mentor

If you had a positive blood test you need the diet no matter what the endo results are. It is entirely your choice as to whether you want to have one done or not. Some doctors will diagnose if you have been having symptoms, had a positive blood test, symptoms resolve on the diet and return if you accidentally get gluten. If you are going to have the endo the time to do it is now as like the previous poster said once you have been gluten-free and healed you may become very ill if you decide later to do the challenge and the challenge would need to be at least 3 months.

Roda Rising Star

Like Raven said it's entirely up to you if you want the EGD. It seems pretty clear that you have a problem with gluten and need to be off of it. I already knew I had celiac based on the blood work buy wanted the EGD to rule out other things as well. It served as a good baseline for me because 1 1/2 years after I went gluten free I had to have another EGD done. I was having bad symptoms and the GI doctor wanted to see what was going on. I had developed a peptic ulcer that wasn't there on my previous scope. You just have to decide if it is worth it or not. Being it's only a few more weeks it might be worth it. I had to wait a month.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,141
    • Most Online (within 30 mins)
      7,748

    smkatin
    Newest Member
    smkatin
    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
      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.  
    • Sarah Grace
      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.