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adab8ca

Total Villous Atrophy=Lactose Intolerance?

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Hello all my gluten-free compadres

I read in another topic (that I can't find now) that if you have total villous atrophy that you are lactose intolerant?

I have no symptoms when I drink milk or eat cheese or ice cream (but again, I never had D or C and just lost weight mysteriously, no pain or stomach issues really), but am afraid that I am possibly slowing down healing?

My GI is useless (I didn't even have a chance to ask questions at my appr. and he basicalloy said "go see a dietician and good luck"). I don't see my GP for 2 weeks. I just got my biopsy results last week but have been gluten-free since Aug 31. I don't drink a LOT of milk, just in my coffee or tea for the most part and I have been trying to eat ice cream to put on some weight (not that it is helping :( seems to be still pretty hard). I actually SAW the dietician ages ago, when the blood work came back, way before the biopsy and although I thought she was lovely at the time, I sent her a few emails (never asking for advice or anything free, just telling her about a vegan bakery I found, and to let her know my results) but I never heard from her, so not sure if she isn't going to answer if I am not paying. Whatever, I don't want to spend 100.00 to see her for an hour to discuss the lactose intolerance.

Oh long winded as usual, any thoughts?

ada


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

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If all your villi are destroyed you will not be producing any lactase. However, unless you had the pillcam done they could not have visualized your whole small intestine, and they take only 4 or 5 biopsies, so if you are okay with lactose it must mean that you still have some villi intact or you would be suffering gas and diarrhea. I would still not push the lactose, personally, until you have done some healing. Milk in tea or coffee, okay, but try some ice cream subs for now (coconut milk ice cream and hemp are both delish). Your body is in healing mode so give it its best chance :D


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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If all your villi are destroyed you will not be producing any lactase. However, unless you had the pillcam done they could not have visualized your whole small intestine, and they take only 4 or 5 biopsies, so if you are okay with lactose it must mean that you still have some villi intact or you would be suffering gas and diarrhea. I would still not push the lactose, personally, until you have done some healing. Milk in tea or coffee, okay, but try some ice cream subs for now (coconut milk ice cream and hemp are both delish). Your body is in healing mode so give it its best chance :D

THANK YOU!!! It looked to me like the villi were all gone (it was all very smooth) but I guess they can't see the microscopic stuff. I thought they were ALL GONE and nobody told me any different. This actually makes me feel a bit better but will certainly lay off the ice cream for now.

Thank goodness I found this place.


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

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If all your villi are destroyed you will not be producing any lactase. However, unless you had the pillcam done they could not have visualized your whole small intestine, and they take only 4 or 5 biopsies, so if you are okay with lactose it must mean that you still have some villi intact or you would be suffering gas and diarrhea. I would still not push the lactose, personally, until you have done some healing. Milk in tea or coffee, okay, but try some ice cream subs for now (coconut milk ice cream and hemp are both delish). Your body is in healing mode so give it its best chance :D

Excellent reply! ;)

For most people it is temporary. And welcome to you! You have found a great place to rest your head and take a deep breath. :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Excellent reply! ;)

For most people it is temporary. And welcome to you! You have found a great place to rest your head and take a deep breath. :)

Thank you Lisa, It IS a weary head. Personally, I am feeling that there is a lack of resources in Canada for Celiacs, from food availability to Dr's knowledge of what is going on to finding a Dr. that even CARES that many celiacs have no gut symptoms (my GI Dr. had NEVER seen it like I had it (although I admit he had a Doogie Howser quality to him, very young), thought it was very weird but otherwise, sent me on my way...I guess they are too busy for further education, and I mean it seriously, the waiting lists are hugely long, so if he can't help me, he needs to move onto the next patient that he can)

I am tired and grumpy and demoralized I have screwed up many times in the last two weeks, so I am actually afraid to eat.


TTG >200 (normal <10)

IgA gliadin 24 (normal <11)

IgG gliadin 38 (normal <11)

Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy

Started gluten-free diet Aug 31, 2010

Only real symptoms are huge weight loss and neuropathy

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I am tired and grumpy and demoralized I have screwed up many times in the last two weeks, so I am actually afraid to eat.

Try to go with as much whole unprocessed food as you can. That will lead to less 'screw ups'. Fresh meats, fish and chicken, veggies and fruits in either fresh or single ingredient frozen form, potatos, rice, nuts in the shell, beans etc are all going to be naturally gluten free. You'll heal faster with less CC risk that way. There can be ups and downs for a bit when we first start the diet so don't be too hard on yourself. Do check all supplements and any meds and it is a good idea to avoid gluten ingredients in your toiletries as well.


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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According to my GI my endoscopy indicated my villi were completely flattened and my biopsies confirmed Celiac Disease. I went on a totally gluten-free diet the day I got the phone call from him. The very next day I started feeling better. I made an immediate and complete recovery from my symtoms.

I never experienced any lactose intolerance of any kind, all the while continuing a heavy intake of milk, cheese, sour cream, and all things dairy.

I don't know if this is common. But I say it can happen.

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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