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Marsh 2 Biopsy After 2 Years gluten-free

NYCCeliacMom

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NYCCeliacMom Apprentice
NYCCeliacMom
Posted

I am not sure this is the right spot on the boards but I just had my first repeat biopsy. I was diagnosed 2 years and 4 months ago and have been completely gluten-free since then. I have a Marsh 2 result on a recent biopsy which means there is still some villi blunting. This doesn't surprise me since I am still lactose intolerant. I will be seeing my doctor but I wonder if anyone knows whether this is okay at this point....should I have healed to the point of having Marsh 1 or 0? I probably had celiac my entire life but wasn't diagnosed until my early 50s.

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quincy Contributor
quincy
Posted

I am not sure this is the right spot on the boards but I just had my first repeat biopsy. I was diagnosed 2 years and 4 months ago and have been completely gluten-free since then. I have a Marsh 2 result on a recent biopsy which means there is still some villi blunting. This doesn't surprise me since I am still lactose intolerant. I will be seeing my doctor but I wonder if anyone knows whether this is okay at this point....should I have healed to the point of having Marsh 1 or 0? I probably had celiac my entire life but wasn't diagnosed until my early 50s.

My understanding is that the older we are the longer it takes to heal,especially if you had significant damage. I was diagnosed last year and I am still lactose intolerant. Have you had any other tests besides a scope? My concerns are that I have other intolerances that no seems too eager to investigate.

I go to celiac doctor in NYC,do you mind me asking who you see and what tests you have had besides the endoscopy and blood work?

PS I have heard that L Glutamine is supposed to help repair damaged intestinal tissue

NYCCeliacMom Apprentice
NYCCeliacMom
Posted
  • Author

I go to the Celiac Center at Columbia and see Dr. Lewis there. I think highly of her. I had the hydrogen breath test to make sure I did not have bacterial overgrowth in the intestines, which causes other problems, including roseaca, which I also have. I have not had other testing for intolerances but think it is possible I have others. I did visit a nutritionist (not the one at Columbia who is very good) who was not up on gluten free at all (she gave me literature for the Diabetic Asso that was ancient and said that buckwheat was a gluten grain). She gave me a test where I blew into a tube and said, there! you don't have any intolerances. I asked, ' shouldn't I have eaten the suspect food to make the test valid?" YES....

I will lookin into L Glutamine. Is that an amino acid?

My understanding is that the older we are the longer it takes to heal,especially if you had significant damage. I was diagnosed last year and I am still lactose intolerant. Have you had any other tests besides a scope? My concerns are that I have other intolerances that no seems too eager to investigate.

I go to celiac doctor in NYC,do you mind me asking who you see and what tests you have had besides the endoscopy and blood work?

PS I have heard that L Glutamine is supposed to help repair damaged intestinal tissue

quincy Contributor
quincy
Posted

I go to the Celiac Center at Columbia and see Dr. Lewis there. I think highly of her. I had the hydrogen breath test to make sure I did not have bacterial overgrowth in the intestines, which causes other problems, including roseaca, which I also have. I have not had other testing for intolerances but think it is possible I have others. I did visit a nutritionist (not the one at Columbia who is very good) who was not up on gluten free at all (she gave me literature for the Diabetic Asso that was ancient and said that buckwheat was a gluten grain). She gave me a test where I blew into a tube and said, there! you don't have any intolerances. I asked, ' shouldn't I have eaten the suspect food to make the test valid?" YES....

I will lookin into L Glutamine. Is that an amino acid?

L-Glutamin is an amino acid yes. Do some inquiry first before just taking it, maybe ask Dr. Lewis. I go to Dr. Tennyson at Columbia, but I did not have the hydrogen breath test. What did you do for the bacterial overgrowth?

I was given the bone density test last June and it came back with osteopenia on a 48 yo male...! I also had severe Vitamin D deficiency.

what did Lewis recommend for the bacterial overgrowth? I have been taking probiotics but recently I lapsed on my strict dietary standards and started eating cheese and drinking wine and some dairy and boy have I paid the price with increased bathrooms visits and what they think might be colitis of some kind.... oy.

I wanted to do the breath test at Columbia for lactose intolerance but they didn't push it cause they said it was a 3 or 4 hour thing, but that must be different than the hydrogen breath test I assume?

  • 3 weeks later...
Simona19 Collaborator
Simona19
Posted

L-Glutamin is an amino acid yes. Do some inquiry first before just taking it, maybe ask Dr. Lewis. I go to Dr. Tennyson at Columbia, but I did not have the hydrogen breath test. What did you do for the bacterial overgrowth?

I was given the bone density test last June and it came back with osteopenia on a 48 yo male...! I also had severe Vitamin D deficiency.

what did Lewis recommend for the bacterial overgrowth? I have been taking probiotics but recently I lapsed on my strict dietary standards and started eating cheese and drinking wine and some dairy and boy have I paid the price with increased bathrooms visits and what they think might be colitis of some kind.... oy.

I wanted to do the breath test at Columbia for lactose intolerance but they didn't push it cause they said it was a 3 or 4 hour thing, but that must be different than the hydrogen breath test I assume?

Hi! I'm also the patient of Dr. Tennyson at Columbia University in New York. I had the hydrogen breath test for bacterial overgrowth and also for fructose intolerance. Both were positive.

For lactose intolerance I need to avoid fruit high in fructose, honey, any fruit syrup, jelly, dry fruit.

For SIBO Dr. Tennyson prescribed for me two antibiotics. I was taking them in the morning and evening for two weeks. The technician knew after two hours that I was reacting badly to the liquid they gave me to drink and she didn't even finished all test. After that I had one more time the test for SIBO done and it was negative.

I didn't ask for the lactose intolerance test because I knew that I was intolerant already. When I ate yogurt or had a cup of milk, I had BM from 15 - 30 minutes. Some times I had even D. Later I found out that I had allergy to casein. If you want to know more, ask me.

quincy Contributor
quincy
Posted

Hi! I'm also the patient of Dr. Tennyson at Columbia University in New York. I had the hydrogen breath test for bacterial overgrowth and also for fructose intolerance. Both were positive.

For lactose intolerance I need to avoid fruit high in fructose, honey, any fruit syrup, jelly, dry fruit.

For SIBO Dr. Tennyson prescribed for me two antibiotics. I was taking them in the morning and evening for two weeks. The technician knew after two hours that I was reacting badly to the liquid they gave me to drink and she didn't even finished all test. After that I had one more time the test for SIBO done and it was negative.

I didn't ask for the lactose intolerance test because I knew that I was intolerant already. When I ate yogurt or had a cup of milk, I had BM from 15 - 30 minutes. Some times I had even D. Later I found out that I had allergy to casein. If you want to know more, ask me.

who tested you for casein? was it by blood test or stool?

Simona19 Collaborator
Simona19
Posted

who tested you for casein? was it by blood test or stool?

I saw my allergist and she gave me injections to see, if I have milk allergy. It was positive. The doctor told me that I must stay away from casein, every milk product, etc.

It wasn't prick test, she injected the liquid under my skin. She also gave me injection for wheat. It was negative for 1 hour, but later I had reaction for more then 24 hour. She told me that I don't have allergy to wheat, but I'm for sure intolerant to wheat. At that time I didn't knew, if I had celiac disease.

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dilettantesteph Collaborator
dilettantesteph
Posted

You may not be gluten free enough. Some of us, super sensitive celiacs, seem to react to the small amounts allowed in gluten free foods. I am very symptomatic and react unless I eat only naturally gluten free foods which I sort, wash, make sure don't have coatings etc.

You might want to start with avoiding things produced in facilities which also process...

cyberprof Enthusiast
cyberprof
Posted

You may not be gluten free enough. Some of us, super sensitive celiacs, seem to react to the small amounts allowed in gluten free foods. I am very symptomatic and react unless I eat only naturally gluten free foods which I sort, wash, make sure don't have coatings etc.

You might want to start with avoiding things produced in facilities which also process...

I agree with Steph on this. You might have to do this to heal - eat mostly whole foods, eliminate processed gluten-free foods and anything questionable.

I also just posted this on another thread but it applies to you too. Open Original Shared Link It states that only 65% of adults heal after 2 years gluten-free, 89% after five years etc. So you are not unusual but I'd suggest the safer diet choices to be pro-active. Good luck!

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    • kopiq
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      By kopiq · Posted

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    • trents
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