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

Get Biopsy?...please Help With Suggestions


pieguyblue

Recommended Posts

pieguyblue Newbie

Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<

I think your "specialist" is specializing in B.S. The bloodwork said celiac. There you go. The biopsy is NOT the gold standard it was thought to be. The samples could be taken from areas not damaged, slight damage could occur where it is misread as normal...You have had a positive test for celiac disease. Two in fact - the diet challenge. The fact that you are feeling better w/o the symptoms every day would be proof enough for me. BTW, the diet challenge is how my dr dx'd me 9 yrs ago. The 2 days avg/week of symptoms could be from a variety of things. I don't know how long you had symptoms, but the longer you were un/misdiagnosed with celiac disease, the more damage was done to your system and therefore more time to heal completely. And you could be getting hidden gluten or be victim to cross-contamination which would cause the symptoms. Your body is telling you it likes the gluten-free diet much better than a gluten diet. Listen to it.

Annette

KaitiUSA Enthusiast

Your blood tests showed it ..you have it. A biopsy can only rule celiac in it can't rule celiac out so the only reason to even get one is to maybe see the extent of damage done.

If you go back on it for testing you need to be on it for 3 months prior....I personally do not think it is worth it....

Have you also changed products like shampoos, hairsprays, makeup, etc?

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. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Oh my goodness medication causing pain !!!!

    2. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    4. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,843
    • Most Online (within 30 mins)
      7,748

    K M
    Newest Member
    K M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ?  I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet.  Rebound muscle pain so intense  How many people get opposite effects or have a horrible attack after these meds
    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
×
×
  • 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.