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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.