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

No Villi Visible After gluten-free For Over A Year?

HS7474

Recommended Posts

HS7474 Apprentice
HS7474
Posted

I was talking to my mom regarding the biopsy I had in March. I had been (and still am) gluten-free for over a year up to that point. Apparently the doctor said that he could not see any villi on my intestine when he did the endoscopy. I believe I tested negative for everything (including celiac disease). Is it normal for my villi to remain damaged for so long? I had thought they started healing immediately.

Thank you!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Did your doctor biopsy? The villi are not visible with the naked eye. If your villi are still absent or severely blunted you are likely still getting gluten somewhere. It can take some time for us to heal. In rare cases folks can have something called refractory sprue where they don't heal even on the diet. Many of them are found to not be as gluten free as they need to be though. How are you feeling? Are you still having symptoms? Are you eating a mostly whole unprocessed diet, taking care against cross contamination and have you eliminated gluten from topical products? Be aware that some of us do not tolerate distilled gluten grains so if you are consuming distilled gluten alcohols you may want to stop for a while and see if it helps.

Paula Wallah Newbie
Paula Wallah
Posted

I have had the same experience. Gluten-free for nearly a year and still no villi. And I am still so sick.....

HS7474 Apprentice
HS7474
Posted
  • Author

They did do a biopsy and I meant to call and get the results again. I'll do that tomorrow as I think they are closed for the rest of today.

I was having some syptoms but believe they are attributed to the sugarfree gum I was constantly chewing - since I've stopped I'm feeling much, much better if not completely. I do drink distilled alcohols, and had a drink last night, but don't believe I had any symptoms. As well, most of the food I eat is unprocessed. I did have very mild symptoms today without explanation, unless the drink last night is to blame. It was nothing to bother over though and could have just been normal body functions at work :)

Cypressmyst Explorer
Cypressmyst
Posted

Have you been checked for parasites and infections? I know that cryptosporidium damages the villi just as badly as gluten for example.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have had the same experience. Gluten-free for nearly a year and still no villi. And I am still so sick.....

Have you eliminated the possibility of other intolerances as well as being very careful about cross contamination? The most common other intolerances are dairy and soy.

cassP Contributor
cassP
Posted

even tho, technically "gluten" from wheat, rye, and barley is the only thing that destroys the villi in those with Celiac-> i TOTALLY have read and believe that countless intolerances (especially dairy & corn/other grains) for SOME people could aggravate the intestines to where they can't heal properly. idk... just a thought.

Also- ive read that Candida has a similar structure to gliadin and can trigger celiac- so maybe Candida can also inhibit the healing of the villi... idk????

hope you get somewhere good soon

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

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

When I was diagnosed, my GI said that the following could impede healing

1) any other food allergies and intolerances, even allergies mild enough not to cause hives or rashes

2) Dairy. If you have no villi, you are not making lactase - it's made in the tips of the villi, as I understand it.

3) drinking alcohol - he recommended that I stay away from it until I was healed.

He said that it could be up to 2 years to heal in celiacs, but there should be some change, by 1 year, I would think.

I would second Ravenwoodglass - you could be getting too much gluten for your system to handle. Something to remember is that 'gluten free' only means that the food has less than a certain amount of gluten (or is presumed to have less than, if it's untested). It's just a legal label.

Gluten contamination is pretty common in the food industry, so if you have any foods that don't have gluten ingredients, that doesn't always mean they don't have gluten contamination. And labels like 'processed on equipment that also processes wheat' are voluntary, not legally required.

A good example is corn tortillas. They have no gluten ingredients, but can be made right next to equipment that process wheat tortillas. And then the flour poofs in the air and settles onto the corn tortillas, and they become contaminated.

Do you work or live in any area with a lot of flour in the air, or a lot of construction? Inhaled gluten tends to be digested as it gets into your throat. Many construction materials have gluten, like drywall dust and sawdust from plywood.

Also, since you're dating - Anything on your partner that might touch your lips when you kiss can get gluten into you also. Lipstick, chapstick, body or face lotion, makeup. Have you checked your hygiene products? toothpaste, flavored floss, shampoo if it ever gets into your mouth when rinsing off.

Good luck, and heres hoping you find the naswer soon.

  • 10 months later...
Lori M Newbie
Lori M
Posted

I was talking to my mom regarding the biopsy I had in March. I had been (and still am) gluten-free for over a year up to that point. Apparently the doctor said that he could not see any villi on my intestine when he did the endoscopy. I believe I tested negative for everything (including celiac disease). Is it normal for my villi to remain damaged for so long? I had thought they started healing immediately.

Thank you!

Yes, its called Fructose Malabsorbtion. Not until I went on a LOW FODMAP diet did I start to heal. Look up a study called Sugar Malabsorbtion in Children by the Australlian Gastro Institute to read about how frutose does the same to villi as gluten.

Read about chronic malabsorbtion, and wiki the small intestine. 30 percent of us are fructose intolerent, gluten is only one of these sugars. dig deeper.

Gluten is only the tip of the iceburg. Garlic,, onion, raisins, honey, cabbage, mushrooms, fruits, and sugar free crap is some of the worst offenders. I did always wonder why a mountain dew or a margarita made me feel like puking after one....now I know.

Low Fodmap is where its at, trust me! I saw a shift of symptoms going just gluten free, as I was eating more fruit and veggies and getting sicker, but different kinds of sicker...more insomnia, more arms and legs going numb...more headaches, more fatigue and depression, more edema and weight gain... Now I know why, ... Fructose MALABSORTION!

Hydrogen breath test if you must confirm, but I dont need anymore doctors to lie to me and run up any more bills. Its all in the food, and there is no copay due for this.... lol.

-Lori

Lori M Newbie
Lori M
Posted

I have had the same experience. Gluten-free for nearly a year and still no villi. And I am still so sick.....

Research Fructose Intolerence or Malaborbtion of Fructose. Missing enzyme. Low FODMAP diet works best. Was sick for a decade before I figured it out. Good luck. The Intolerent Diner site has a pretty good list of FODMAPS to avoid...its a start.

Lori

Lori M Newbie
Lori M
Posted

When I was diagnosed, my GI said that the following could impede healing

1) any other food allergies and intolerances, even allergies mild enough not to cause hives or rashes

2) Dairy. If you have no villi, you are not making lactase - it's made in the tips of the villi, as I understand it.

3) drinking alcohol - he recommended that I stay away from it until I was healed.

They left off a biggie to check... FRUCTOSE MALABORBTION... 30 percent of us have it, yet the doc says NOTHING about that. LOW FODMAP healed ME! Garlic, onions, raisins, honey, sugar free stuff, cabbage, apples, pairs, peaches, plums, mushrooms,.... Look up Study: Sugar Malabsorbtion in Children by Australlian Gastro institute. Hope this helps.

  • 5 weeks later...
Aly1 Contributor
Aly1
Posted

You are getting lots of good advice...

You mention that you drink distilled alcohols. I can't tolerate those, despite the claims that they are okay. Maybe avoid that for now and see...I now drink potato vodka which has been fine.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,392
    • Most Online (within 30 mins)
      7,748
    Shirley H
    Newest Member
    Shirley H
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
×
×
  • 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.