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

Is A Follow-up Endoscopy Needed 6 Months After Initial Diagnosis?


mellamella

Recommended Posts

mellamella Newbie

I was diagnosed in Aug '07. I am feeling and doing well living gluten free. Last week I had a 6 month follow-up with myGI guy. Blood work was repeated and all came-back normal. He has scheduled me for another upper endoscopy. I think this is really not necessary. He is a major doctor in a major city and explained to me that this is his protocal for definative diagnosis. I would love to hear who else has had a repeat upper endoscopy, and what exactly was the time frame for doing so? Thanks for your input!


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



Celiac.com Sponsor (A8-M):



johnsoniu Apprentice
I was diagnosed in Aug '07. I am feeling and doing well living gluten free. Last week I had a 6 month follow-up with myGI guy. Blood work was repeated and all came-back normal. He has scheduled me for another upper endoscopy. I think this is really not necessary. He is a major doctor in a major city and explained to me that this is his protocal for definative diagnosis. I would love to hear who else has had a repeat upper endoscopy, and what exactly was the time frame for doing so? Thanks for your input!

I was just dx'd last month and had my follow up consult and blood work last Thursday.

He said everything looked good on the blood work, asked how the stools were, and said he'd see me in 6 months. Said he might take another endoscopy in a year or so, but it would depend on how I was feeling then.

I would think if your original scope showed a lot of damage( I had a lot), he may want to look to see how things were progressing, but if you're feeling well it kinda seems redundant. Better safe than sorry I guess. Or he just might be using you as a guinea pig to source in his next research paper. For which you'll receive no royalties B)

psawyer Proficient

I had both an endoscopy and a colonoscopy in June of 2000. My colon was normal, but the small intestine showed severe damage to the villi.

Since it has been seven years, and I am over 50, my primary care physician believes that a colonoscopy every seven to ten years is indicated. Since the preparation overlaps and the extra effort is small, she also wants another endoscopy to see if my villi have completely healed (an indication of just how gluten-free I have really been).

The double procedure is scheduled for July 10. The actual procedure is not a big deal, but the purging of the digestive tract in preparation is a royal pain in the @$$. For a diabetic (like me), there are extra challenges as you try to manage blood sugar and insulin levels during the final 24 hours.

Six months seems, to me, a bit soon. Depending on how long you went without a diagnosis (while eating gluten) and your age when you went gluten-free, it may take longer that to heal the villi. But if your blood work is now negative, that is a strong sign that the gluten-free diet is working and the villi should be on the road to recovery.

Fiddle-Faddle Community Regular

What will he do if your villi have or have not improved? It's not like you can go MORE gluten-free!

If the outcome is not going to change by having an invasive procedure, why have it?

pinky Apprentice

my doctor had me do a follow-up endoscopy after 1 year to see if the gluten-free diet was working. then blood work also every year, but only the one endoscopy.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,900
    • Most Online (within 30 mins)
      7,748

    MissAprilTX
    Newest Member
    MissAprilTX
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Please do get checked for nutritional deficiencies.  A good B Complex, Vitamin D, Benfotiamine (a form of Thiamine Vitamin B1 that promotes intestinal healing), Vitamin D and magnesium are a good way to start. Correcting nutritional deficiencies with Thiamine supplements (like Benfotiamine), B Complex, and Vitamin D were my miracles. How are you doing?  Sending prayers.
    • knitty kitty
      @Alibu, I think you should send the National Institute of Health peer reviewed studies I linked to your doctors.  Some doctors don't keep abreast of the recent updates to Celiac diagnosis.  They may still be operating under the old idea of waiting until intestinal damage is at a Marsh score of 3C or 4 (complete villus atrophy) before diagnosis of Celiac is made.  Better to diagnose before it gets that severe.   Much of the damage to the small intestines is microscopic and NOT visible to the naked eye.   Since you've got Celiac genes, it would be beneficial if you kept to a strict gluten free diet.  Exposure to gluten and an environmental stress (like an infection or physical stress or emotional trauma) are needed for the Celiac genes to become activated.  If you don't have active Celiac now, a gluten free diet now will help prevent developing it in future.  
    • Alibu
      @knitty kitty Thank you for your response!!  So do you think my doctor might still diagnose celiac even with the negative biopsy?  At this point I'm just wondering like do I have to be super careful when I eat places for cross-contamination, or do I just have to eat gluten free and not worry about the damage so much as the symptoms, you know?  Like with celiac I know my body is attacking itself and doing damage (although apparently not haha) and with an intolerance it certainly doesn't feel good, but it's not doing the same kind of damage, you know? I sent a message to the doctor asking if I should do a video capsule endoscopy or if we should have a second opinion on the pathology but ugh, I just want a clear answer so whatever it is, I can move forward!!
    • knitty kitty
      Welcome to the forum, @Gary Libby! Have you talked to your doctors and nutritionist about checking for nutritional deficiencies and supplementing with vitamins and minerals while you're healing?   Malabsorption caused by the inflammation and damage of celiac disease can deplete our stored vitamins, making us feel poorly the majority of the time.  The B vitamins are needed to digest our food and turn it into energy for our body to function.  If we're not able to absorb nutrients from food, taking a B Complex vitamin supplement can help immensely.  Do get checked for deficiencies before starting supplements.  Ask for an Erythrocyte Transketolace test.   Consider folliwing the Autoimmune Protocol diet to help your intestines heal.  Benfotiamine, a form of thiamine Vitamin B1, has been scientifically shown to promote intestinal healing.   Hope this helps and you feel better soon!  Keep us posted on your progress.
    • knitty kitty
      @terrymouse, I agree that you may be suffering from nutritional deficiencies already.  Get tested for nutritional deficiencies before supplementing, otherwise the vitamins you're taking can mask a deficiency.   Symptoms that you have are similar to what I experienced with malabsorption of Celiac Disease.  I would lose my appetite; if I did eat, I got full quickly, and had nausea, dizziness, trouble digesting fats, abdominal pain, and heart palpitations.  I had unintentional weight loss.  I also had my gallbladder removed.  I was deficient in the essential nutrients, especially Thiamine and the other B vitamins. Ask for an Erythrocyte Transketolace test.  Thiamine deficiency symptoms may appear first because our body can't store it for more than three weeks and our metabolic needs for Thiamine increase when we're physically sick or emotionally stressed, so we can become depleted quickly.  Thiamine deficiency symptoms include gallbladder problems and all the ones list above.  Thiamine and the other B vitamins are needed to digest our food and turn it into energy for our body to function.  Gastrointestinal Beriberi is frequently overlooked by doctors.   Ask for a DNA test to check for any known genes for Celiac Disease.  You have to have at least one gene for celiac disease to develop.  You don't have to be eating gluten for a DNA test.  Your genes don't change.  If you don't have any celiac disease genes, you can focus on other reasons for your illness.  If you do have celiac disease genes, with your positive blood test results, you, your doctors and nutritionist can focus on correcting nutritional deficiencies which will help you heal and feel better.  
×
×
  • Create New...