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

Will An Endoscopy Show Physical Evidence Of Celiac?


jwblue

Recommended Posts

jwblue Apprentice

Will an endoscopy show evidence of Celiac or does the doctor need to take a specimen for lab testing?

I have had two endoscopies for other digestive disorders and am disappointed that the doctor didn't suggest I be tested for Celiac.

Why not since he is down there already?

Now I have to have an endoscopy just for Celiac.

Is it possible the doctor did not see any physical evidence of Celiac and decided a lab test was not necessary?


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Yes, it's possible they didn't see it. It may not be visible to the naked eye or the damage can be patchy, and they did not look in an area which had the damage closely enough. For celiac, they are supposed to look in the area where the stomach and intestines meet, the duodenum. They are supposed to take enough samples for biopsy that they get a good representation of the status of the area.

Open Original Shared Link

Skysmom03 Newbie

It also may not have been something they were looking for at the time. It can't be diagnosed with the naked eye.

psawyer Proficient

Is it possible the doctor did not see any physical evidence of Celiac and decided a lab test was not necessary?

In a word, yes. Only in severe cases is the damage visible to the naked eye. Usually it is not. Marsh I and II are not visible, but are definitive diagnostics. You have to be well into the March III stages before it may be visible. Marsh IV is total destruction of the villi and will be visible to a trained eye (been there).

jwblue Apprentice

In a word, yes. Only in severe cases is the damage visible to the naked eye. Usually it is not. Marsh I and II are not visible, but are definitive diagnostics. You have to be well into the March III stages before it may be visible. Marsh IV is total destruction of the villi and will be visible to a trained eye (been there).

Did you have any symptoms with Marsh IV?

1desperateladysaved Proficient

Did you have any symptoms with Marsh IV?

Additional questions for PSawyer :

Did it heal well?

How long did you have symptoms?

psawyer Proficient

I had severe symptoms for years prior to my diagnosis: diarrhea, nausea, vomiting, cold sweats, anemia, and others.

I saw a significant improvement within six weeks, but it was more like six months to feel normal. A follow-up five years later showed normal villi. In other words, complete healing of the intestine on a strict gluten-free diet.


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



Celiac.com Sponsor (A8-M):



Celiac Mindwarp Community Regular

Peter

What amazing healing. It is so great to hear others stories. No wonder you are such a good advocate :)

love2travel Mentor

Are you talking endoscopy or colonoscopy?? Two different things, two different ends. :)

SMDBill Apprentice

I just had my endoscopy yesterday and one of the questions I asked in advance was whether damage would be visible or not. He said most times the damage is only microscopic so they do their best to determine where to sample/biopsy and they use multiple locations just for that reason. Mine was ugly. I had many visible spots on the printout of some photos he took while in there and for now he just diagnosed as erosive gastritis for the damage to my stomach lining (way too much ibuprofen over the last few years - daily - due to celiac-induced headaches) and duodenitis for the damage seen to the intestine/duodenem (sp?).

He was surprised to see so much damage visibly, but even invisible damage is of great concern so either way it is important that they take multiple samples.

Edit: Of note to anyone who reads this and has not been diagnosed, I've been gluten free for 2 months now and my endoscopy results were still very visible. Not everyone will see the same results, obviously, but any doubters can rest assured that even if you are gluten free for some time, they may still be able to medically diagnose you accurately from the endoscopy. I don't have blood results back yet, but he seems certain they'll also agree with the endoscopy just due to the severity of the damage. Moral of the story...if you want to know and have self-diagnosed recently...GO GET TESTED! You may be pleased to have a medical confirmation and a plan to heal your blood, bone, thyroid or whatever issues you have that need more than supplements and gluten-free diet.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.