Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Do I Need To See A Gi

Heather S

Recommended Posts

Heather S Newbie
Heather S
Posted

I have recently been diagnosed with celiac through a positive gliadin peptide result. I've been gluten-free for two months and feel ten years younger! My doctor is recommending I see a GI, but I have terrible insurance and have paid so much out of pocket to get to this point. My question is can I live my gluten-free life and not see the GI? Won't that be the end result, anyway?

I'm not cheap, and my health is important to me, but I can't afford to get the same answer.

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

Celiac.com Sponsor (A8-M):


home-based-mom Contributor
home-based-mom
Posted
I have recently been diagnosed with celiac through a positive gliadin peptide result. I've been gluten-free for two months and feel ten years younger! My doctor is recommending I see a GI, but I have terrible insurance and have paid so much out of pocket to get to this point. My question is can I live my gluten-free life and not see the GI? Won't that be the end result, anyway?

I'm not cheap, and my health is important to me, but I can't afford to get the same answer.

Do you know why your doctor wants you to see a GI? If it's to do a biopsy to confirm the blood test, it might already be too late as you have begun to heal already. Are there other issues?

If your doctor just wants you to have a biopsy and wants the GI to conform that, I think I might politely decline for the above reason. Paying out more money just to be told what you already know is not my idea of a wise use of limited resources.

Heather S Newbie
Heather S
Posted
  • Author
Do you know why your doctor wants you to see a GI? If it's to do a biopsy to confirm the blood test, it might already be too late as you have begun to heal already. Are there other issues?

If your doctor just wants you to have a biopsy and wants the GI to conform that, I think I might politely decline for the above reason. Paying out more money just to be told what you already know is not my idea of a wise use of limited resources.

kbtoyssni Contributor
kbtoyssni
Posted

Many doctors see a positive biopsy as the "gold standard" diagnosis. So you doc may want you to get that test done. BUT you already have a positive diagnosis so it's not necessary to get a scope done. I would ask your doc if there's another reason to get a scope - sometimes a doc may want to look for other issues - but it's unlikely. Also, with being gluten-free for two months already, you've started to heal and will probably get a negative result from the scope. A scope can only re-confirm what the blood test has already told you or show that you've started to heal which you already know since you feel so much better.

Heather S Newbie
Heather S
Posted
  • Author

Thanks, this was helpful. My doc is not a GI (he's an immunologist) and I think he just wanted to make sure I was seeing someone who specializes in this. But my take on it is that I feel better on the gluten-free diet and that I should just stick with that and be healthy.

I actually threw a little party when I got my positive test result. I've been chasing down this mysterious illness for 17 years, believe it or not. Now I know the enemy and he's not so big. I'd been tested three times for Lupus, twice for rhuematoid arthritis, and I'd been told I had endometreosis (pain in my abdomen) and should have a hysterectomy. Every time I went to the doctor they did a round of blood tests, but not specifically for Celiac, and I'd come back deficient in some additional vitamin or mineral (amassing a long list of deficiencies over the years), but nothing more. I was so frustrated. Understanding what the problem is and that with proper care I can be healthy has changed my whole life. I'm 42 and felt like I was 62 before my diagnosis. I'm now thinking of hiking the Pacific Crest trail from Washington to California next summer. Couldn't have fathomed that a couple of months ago. Yippee!!

kbtoyssni Contributor
kbtoyssni
Posted
I actually threw a little party when I got my positive test result. I've been chasing down this mysterious illness for 17 years, believe it or not. Now I know the enemy and he's not so big. I'd been tested three times for Lupus, twice for rhuematoid arthritis, and I'd been told I had endometreosis (pain in my abdomen) and should have a hysterectomy. Every time I went to the doctor they did a round of blood tests, but not specifically for Celiac, and I'd come back deficient in some additional vitamin or mineral (amassing a long list of deficiencies over the years), but nothing more. I was so frustrated. Understanding what the problem is and that with proper care I can be healthy has changed my whole life. I'm 42 and felt like I was 62 before my diagnosis. I'm now thinking of hiking the Pacific Crest trail from Washington to California next summer. Couldn't have fathomed that a couple of months ago. Yippee!!

Good for you! I throw myself a party every year on my gluten-free anniversary. It's like a second birthday to me :)

Archived

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

Go to topic listing

  • 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. Jess270
      - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions...
    2. cristiana
      - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

      I missed this article when it was first put up. It is interesting to read, as my old neighbour who sadly passed away a few years ago was a trainee midwife during WWII. Bananas disappeared from the shops in Britain during the war, but she told me that those that did get to the UK were kept back for infants with coeliac disease. I didn't realise that...
    3. trents
      - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    4. GeoPeanut
      - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease, and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with...
    5. trents
      - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,057
    • Most Online (within 30 mins)
      7,748
    Glutard007
    Newest Member
    Glutard007
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...