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

Should I Be Scoped Again After 1 Year gluten-free?

BabsV

Recommended Posts

BabsV Enthusiast
BabsV
Posted

So, just trying to figure out follow-up tests, etc. I've been gluten-free for 8 months now...we'll be moving back to the States in 2 more months and I'm trying to sort out new doctors (who might actually have some knowledge about Celiac!) and schedule appointments if at all possible.

Did anyone have another biopsy after 1 year gluten-free? Is that standard?

One of my docs is saying I should...another is saying to only do blood work. My 6 month blood work showed a marked drop in antibodies and lots of my symptoms have resolved but I'm still dealing with terrible abdominal pain issues at times. I'm thinking another food intolerance and trying to figure it out -- when I mentioned it the doctors here (in Poland) looked at me like I was crazy and repeated the Polish Celiac mantra (as I call it): "You can't drink beer but you can still eat potatoes. The pain is from the Celiac. You just have to live with it."

On a positive note I've been in touch with the Univ of MD Center for Celiac Research since it's only about an hour from where I'll be living and they were great. I'm in the process of scheduling an appointment; I figure Dr. Fasano and his team should be able to come up with some ideas if anyone can!

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

Celiac.com Sponsor (A8-M):


Christine0125 Contributor
Christine0125
Posted

On a positive note I've been in touch with the Univ of MD Center for Celiac Research since it's only about an hour from where I'll be living and they were great. I'm in the process of scheduling an appointment; I figure Dr. Fasano and his team should be able to come up with some ideas if anyone can!

I'll be very interested to hear how the appt goes with U of M. I live about an hour from there and my husband works for the hospital. I had considered making an appt there but decided to see a local doctor and go there in the future if needed. My family is also participating in the Center for Celiac Research Run/Walk 5K on May 20th!

ravenwoodglass Mentor
ravenwoodglass
Posted

You might want to make the appointment and do make sure to bring your records from your current doctors with you. Talk to the doctor about whether there is a need to rebiopsy when you get there. Since you are still having problems they may want to retest and biopsy to make sure you still haven't got gluten sneaking in or whether you may also have something else going on.

CeliacAndCfsCrusader Apprentice
CeliacAndCfsCrusader
Posted

My doc's basically told me that a scope isn't necessary after the initial one, as long as I don't cheat and my blood work comes back negative.

Even thought I didn't mind the actual procedure, their feeling is that ANY surgical procedure should be "necessary".

That being said, I think it's ultimately up to us whether our bodies are telling us something. Good luck.

BabsV Enthusiast
BabsV
Posted
  • Author

Thanks for the input. The doctors I'm around right now are really really keen on tests -- I'm tired of schlepping to get blood drawn and getting ultrasounds not to mention I don't want to have any unnecessary procedures!

plumbago Experienced
plumbago
Posted

Dr Fasano will tell you that the best way to tell is to get the endoscopy.

I often ask myself the same question. I'm just reluctant to get another endoscopy. I have relied on blood tests, keeping an eye out especially for vitamin absorption (which is better but still on the low end of the range).

lovegrov Collaborator
lovegrov
Posted

WARNING: I am NOT a doctor or medical person!!

If you feel good and your blood tests are good, I just don't see the need for another biopsy. There are some dangers involved in sticking stuff own your throat and into your small bowel, although overall it's a relatively safe procure. The second time they did my dad, they accidentally tore his esophagus(??). He ended up fine, but it certainly wasn't any fun.

I've never had another one after being diagnosed and I don't plan to unless there's something strange going on.

richard

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
benXX Rookie
benXX
Posted

Besides bloodtests, nowadays there are also stool tests available. If they all come up negative and there are no obvious symptoms, I sure wouldn't let that tube inside me again. I found it to be a rather traumatic experience.

irish daveyboy Community Regular
irish daveyboy
Posted

Not sure how old you are, I've had serveral follow up procedures.

1st one after 12 months gluten-free showed villi were nearly fully healed (I stuck rigidly to a Gluten Free Diet and only used foods recommended at less than 20PPM by the Irish Coeliac Society).

They did however find a large polyp (Adenoma) in my lower bowel people over 50 are more susceptible to polyps than those under 50.

I was advised that they can, if left untreated become maglignant.

I had another Colonoscopy recently and had another 2 smaller polyps removed, it was recommended by the hospital that I have a follow up colonoscopy every 2 years.

benXX Rookie
benXX
Posted

Not sure how old you are, I've had serveral follow up procedures.

1st one after 12 months gluten-free showed villi were nearly fully healed (I stuck rigidly to a Gluten Free Diet and only used foods recommended at less than 20PPM by the Irish Coeliac Society).

They did however find a large polyp (Adenoma) in my lower bowel people over 50 are more susceptible to polyps than those under 50.

I was advised that they can, if left untreated become maglignant.

I had another Colonoscopy recently and had another 2 smaller polyps removed, it was recommended by the hospital that I have a follow up colonoscopy every 2 years.

I'm 58

It's not the Colonoscopy I found traumatic. I referred to the scope to check the villi.

Ben

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,033
    • Most Online (within 30 mins)
      7,748
    DeeDeeS
    Newest Member
    DeeDeeS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.