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

Dr Said Villi Looked Normal


alexsami

Recommended Posts

alexsami Contributor

Had endoscopy this morning and my dr said everything looked normal. Does that mean no celiac? Could biopsies tell something different ? Thanks


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Yes the biopsies could say something different as often the damage is not visible to the eye. I don't remember if you had positive blood work, if you did then you definately need the diet. If you didn't have positive bloods but you are done with celiac related testing now you do the diet strictly to see if it helps.

alexsami Contributor

Yes the biopsies could say something different as often the damage is not visible to the eye. I don't remember if you had positive blood work, if you did then you definately need the diet. If you didn't have positive bloods but you are done with celiac related testing now you do the diet strictly to see if it helps.

i only had the elevated gliadin antibody

>11 normal

<18 positive

i had 16....equivocal range

mushroom Proficient

Sometimes when you fall in the equivocal range it means you are on your way there, you just haven't arrived yet :o It is definitely worth a trial of the diet even if your biopsy is negative.

lucky28 Explorer

When I had my endoscope done I had asked ahead of time for them to save and print out pictures for me. when I woke up my dr said everything looked fine and he would see me in 2 weeks to get the results, "don't worry about changing your diet". I took one look at the pictures and it was as if they went to google imaages and printed out a picture of classic celiac scalloping and mosaic pattern. I told him that I had already decided to try the diet and he said "oh, ok, well I'll see you in 2 weeks then". I didn't tell him when I got to my appt that I had already picked up a copy of the test results (I didn't want to "steal his thunder" :lol: I was shocked when he sat down and said it looks like you were negative for celiac! I asked him to see the pathology report and that was when he discovered he didn't have it yet, he had to call the hospital to get it faxed to him. well he came back in and apologized then he asked me if I felt any better on the diet. I told him yes, that I actually did. He was very happy, ordered bloodwork for vitamin deficiencies and even photocopied the lab results HIMSELF to give me a copy! I didn't have the heart to tell him I already had my own copy :P .

So I guess what I'm trying to say is that maybe your dr is just reluctant to diagnose until he's 110% sure!

alexsami Contributor

thanks to all for your responses....this is just pretty frustrating.....i was also gluten free for a month prior to the endoscopy.....ate gluten the week before.....but he said if there is alot of damage....it would show up anyways.....just weird when you have alllllllllll the symptoms.....crazy......he said normal appearance of villi, but did send biopsies off.....i guess my question is could he be wrong

Bubba's Mom Enthusiast

Yes..he could be wrong. The small intestine is long. The scope doesn't reach all of it. It's very possible that you had villi damage outside of the scope's range.

Also, several samples need to be taken for inspection. Some damage is only obvious under the magnification of a microscope. It's maddening isn't it? :blink:


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



Celiac.com Sponsor (A8-M):



kwylee Apprentice

Even if bloodwork and biopsies come back negative for Celiac, it doesn't necessarily mean that your body does not react to gluten. My bloodwork/biopsy was negative for Celiac. Yet other testing showed beyond any doubt that my body produces antibodies to gluten, which means my body sees it as a foreign invader. Not sure why gluten decided to attack me neurologically instead of intestinally, but it did. Perhaps in time I would have developed damage to my intestines, perhaps not - I'll never know. Because once I removed gluten from my diet there was no mistaking the change in my health and wellbeing and I'll never go back to eating it.

In fact there are MANY I've read about on this forum who know that gluten affects their gut, their brain, their skin, their thyroid, etc., but all blood and biopsy work come back negative for them. Clearly, there is still alot to learn about what gluten can do to a system that is intolerant. But here's the bottom line: whether current medical experts label you Celiac or Non Celiac Gluten Intolerant, it's still the same treatment. Eating gluten does damage to my body. And I am well since I removed it from my diet (along with dairy and soy).

ravenwoodglass Mentor

thanks to all for your responses....this is just pretty frustrating.....i was also gluten free for a month prior to the endoscopy.....ate gluten the week before.....but he said if there is alot of damage....it would show up anyways.....just weird when you have alllllllllll the symptoms.....crazy......he said normal appearance of villi, but did send biopsies off.....i guess my question is could he be wrong

Yes being gluten free for a month could make a difference even with a week of adding it back in. Your doctor was wrong about that. How did you react to adding gluten back in? If you had issues when you added it back in for a week then your body is giving you the answer.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748

    pilber309
    Newest Member
    pilber309
    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

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.