Jump to content
  • 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):

Dr Returned Call !


barbara123

Recommended Posts

barbara123 Apprentice

Hey everyone just wanted to get you guys up to date. My dr finally returned my call last night at 10.30 pm. :blink:

Said i still tested positive for celiac disease but my IGA is still really low. Now back in for more blood tests and another endo <_< really don't like the idea of yet another endo but what do you do?

Feeling somewhat better today, YES I AM OUT OF BED !!!

Think I will take myself to the store and get something good to eat :P

Barb


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Hey everyone just wanted to get you guys up to date. My dr finally returned my call last night at 10.30 pm. :blink:

Said i still tested positive for celiac disease but my IGA is still really low. Now back in for more blood tests and another endo <_< really don't like the idea of yet another endo but what do you do?

Feeling somewhat better today, YES I AM OUT OF BED !!!

Think I will take myself to the store and get something good to eat :P

Barb

I hope that something is gluten free or are you in the doctor prescribed 'let's poison you until we are absolutly sure that gluten is killing you because our tests don't show as positive as we want them to" stage that so many doctors needlessly do to us when our bodies are already screaming at us to get rid of the poison.

barbara123 Apprentice
I hope that something is gluten free or are you in the doctor prescribed 'let's poison you until we are absolutly sure that gluten is killing you because our tests don't show as positive as we want them to" stage that so many doctors needlessly do to us when our bodies are already screaming at us to get rid of the poison.

No i am still on the gluten-free diet. Still feeling well today (thats 3 days in a row) :D

I dont know if he will find anything on the endo after 3 months on diet but he said to stay on diet :blink:

Right now just happy :D to be able to get out of bed!!!

buffettbride Enthusiast
No i am still on the gluten-free diet. Still feeling well today (thats 3 days in a row) :D

I dont know if he will find anything on the endo after 3 months on diet but he said to stay on diet :blink:

Right now just happy :D to be able to get out of bed!!!

I'm glad you are feeling better and that gluten-free is working for you. YAY!

ravenwoodglass Mentor
No i am still on the gluten-free diet. Still feeling well today (thats 3 days in a row) :D

I dont know if he will find anything on the endo after 3 months on diet but he said to stay on diet :blink:

Right now just happy :D to be able to get out of bed!!!

Great, isn't it wonderful when we finally start to feel better. If you were diagnosed by endoscopy the endo could be useful in seeing how much you have healed. If it comes back negative you know that you are on the right track, not that your dietary response has not shown that already. He may just want to check on your healing. I am relieved to hear he wasn't talking about a gluten challenge, that was my fear for you.

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. - knitty kitty replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Skin issues

    2. - nancydrewandtheceliacclue posted a topic in Introduce Yourself / Share Stuff
      0

      Celiac flare years after diagnosis

    3. - nancydrewandtheceliacclue replied to lehum's topic in Super Sensitive People
      15

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    4. - Parkrunner commented on Scott Adams's article in Spring 2025 Issue
      1

      How Celiac Disease Impacts Bone Health: What You Need to Know

    5. - trents replied to Ben Cohen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      How much gluten do I need to eat prior to testing?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,043
    • Most Online (within 30 mins)
      10,442

    nancydrewandtheceliacclue
    Newest Member
    nancydrewandtheceliacclue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Been here.  It's okay.  You're not imagining things, but there's no bugs or parasites in your skin.  The cats are not infecting you with anything.  That's a hyperkeratotic plug that builds up in a hair follicle which does go deep and is attached by the hair sheath that looks stringy.  It's a type of thing seen commonly in Dermatitis Herpetiformis.   Niacin B 3, in the form Nicotinic Acid (active form that causes flushing) or in the form Niacinamide will help immensely with clearing this up.  Take 100 mg three times a day, and Tryptophan (another form of Niacin) to help you sleep and heal your intestines at night.   Kidney stones can result when the body doesn't have sufficient Thiamine B 1.   Are you taking a B Complex supplement?  The eight B vitamins are water soluble.  Many people with Celiac Disease benefit by taking a B Complex to boost absorption.   The cloves are great because they can reduce inflammation, but your body needs the Bs and extra Niacinamide as well.  Benfotiamine, a form of Thiamine B 1, is also needed in higher doses to heal the intestines.  If you get your intestines calmed down, your skin will calm down, too.  Benfotiamine has anticancer potential in higher doses. Rapid resolution of delusional parasitosis in pellagra with niacin augmentation therapy https://pubmed.ncbi.nlm.nih.gov/19061687/ Tryptophan metabolism: From physiological functions to key roles and therapeutic targets in cancer (Review) https://pmc.ncbi.nlm.nih.gov/articles/PMC12139378/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • nancydrewandtheceliacclue
      Hello everyone! I am very glad to be a part of this group. I want to share a bit about my celiac journey and hear from you as well. I was diagnosed when I was around 19-20 with a confirmed blood test and biopsy. I am now 28 and since my diagnosis, I have been strictly gluten-free. I have discovered over the years many new intolerances to foods, not to mention bad joint pain and skin issues, which led me to going on the carnivore diet. I don't eat dairy, sugar, or grains, except for rice/rice flour crackers, which seems to be the only substitute I can tolerate. I feel pretty good most of the time, but every so often I have what I consider to be a "celiac flare", which always follows the same pattern: I get a mild stomachache that gets progressively worse, followed by nausea, vomiting, and severe abdominal pain that lasts hours. What is strange to me is that I didn't have as severe symptoms as I do now before my celiac diagnosis, when I still actively eating gluten, even though I felt crummy and had synotoms. Has anyone else experienced symptoms like this? I am so careful with what I eat and I never eat out. As I was looking around on the forum here, I found a post where someone asked about airborne gluten and subsequent reactions. My mom likes to feed the birds bread, and I was helping her toss bread around. Could even touching gluten or breathing it in result in a reaction like what I had? I wash my hands and keep everything separated in the kitchen, of course. It is just very frustrating, because I am so careful and when I have these flares, the pain is debilitating. Any advice or experiences you have had would be greatly appreciated. Thank you and God bless. 
    • nancydrewandtheceliacclue
      I am currently 28 and was diagnosed when I was 19-20.  I am strictly gluten free and dairy free, grain free etc. I just had to say that I had a horrible reaction to quinoa when I tried it as an alternative. It was certified gluten-free quinoa noodles. I couldn't even finish the bowl of food before I started to feel sick. I had trouble breathing and threw up. It was one of the most severe reactions I have ever had, so I have never eaten it again. Since cutting out gluten, I feel that over the years I have developed new intolerances to foods. I eventually went on the carnivore diet which helped me a lot. I no longer have joint pain and my skin is better. I would recommend trying carnivore, because even foods that you think aren't affecting you could be, especially sugar, natural or otherwise. 
    • trents
      Thanks for the update, Ben. If you will be having an endoscopy/biopsy to confirm the results of the blood testing - and this would be the normal protocol - you will still need to continue the gluten challenge until that is done.
    • Ben Cohen
      Update on how things went. To meet my daily quantity of gluten I had a measured amount of gluten flour with my breakfast and 2 slices of bread later in the day. I still had discomfort but it wasn't debilitating. My blood tests results came back this week and they were positive so I've been referred to a specialist.
×
×
  • Create New...