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HS7474

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

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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!


Diagnosed with Celiac Disease by blood test: late November 2008

Consciously Gluten Free starting end of November 2008

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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 :)


Diagnosed with Celiac Disease by blood test: late November 2008

Consciously Gluten Free starting end of November 2008

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


Grain Free

Casein Free

Soy Free

Refined Sugar Free

Preservative Free

Free Range

Free Willy

Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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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.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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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

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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

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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.

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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.

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