Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      127,509
    • Most Online (within 30 mins)
      7,748
    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Can gallbladder issues cause symptoms of celiac disease?

      By knitty kitty · Posted

      Welcome to the forum, @robingfellow and @Mr-Collateral531, I also had to have my gallbladder removed in emergency surgery.  The gallbladder uses lots of thiamine vitamin b1 to function.   The gallbladder cannot secrete bile if it doesn't have sufficient thiamine.  Thiamine provides our muscles and glands energy to move and secrete needed enzymes and hormones.  The thyroid is another gland that requires lots if thiamine to function and secrete hormones.   Our brains, just thinking at a desk job, requires as much thiamine as our muscles do if running a marathon.   Migraines are linked to thiamine deficiency. Thiamine is the first of the eight B vitamins that our body needs. Thiamine can only be stored for three weeks at most.  Our thiamine stores can be depleted in as little as three days.  We need more thiamine when we have a physical injury (like recovering from surgery or fighting the flu), if we're emotionally stressed or traumatized, and if we're physically active.  Thiamine, like the other B vitamins, is water soluble and easily excreted in urine or most in diarrhea.  B vitamins are commonly poorly absorbed in Celiac Disease.  Thiamine and the other B vitamins need to be taken together because they interact with each other to make life sustaining enzymes.  Thiamine deficiency can affect individual organs.  Gallbladder dysfunction is connected to thiamine deficiency, as is hypothyroidism.    Migraines are connected to thiamine deficiency.  Gastrointestinal Beriberi (abdominal pain, vomiting, etc.) is a result of thiamine deficiency.  Tachycardia and fatigue are also symptoms of thiamine deficiency.   Thiamine and magnesium make enzymes that are essential for life.   Thiamine is needed to absorb certain minerals like iron.  Anemia and thiamine deficiency frequently occur together.  Thiamine deficiency can cause poor blood cell production (including low antibody production).   Thiamine interacts with other vitamins and minerals.  Vitamin D is not utilized by the body until turned into an active form by Thiamine. Thiamine is safe and nontoxic even in high doses.  High doses of thiamine correct deficiencies quickly which prevent further health deterioration.  A one a day type multivitamin is not sufficient to correct vitamin and mineral deficiencies that occur in the malabsorption of Celiac Disease.   The Gluten free diet is low in vitamins as they are not required to be enriched with vitamins lost in processing.  Supplementing with thiamine and the B vitamins boosts their absorption.   Helpful Reading: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/ P. S. Try a DNA test to see if you have any known genes for Celiac Disease before doing a gluten challenge.
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 
    • trents
      Certified gluten free oats

      By trents · Posted

      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      Can gallbladder issues cause symptoms of celiac disease?

      By robingfellow · Posted

      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
×
×
  • Create New...