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milkmommy

Curious About Correlations

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HI Everyone,

Im am wondering if anyone knows if there is a correlation between what is seen on an endoscopy and recovery time or marsh score?

I havent seen my GI for the biopsy results however my family dr gave me a printout of the endoscopy procedure. It stated "loss of folds, nodular mucosa and scalloping in the first and second portion of the duodenum." Is that normal for celiac patients? is it any sign of severity or what marsh score it correlates with?????

As I have posted previously, I have been gluten free since April 20th and my symptoms have gotten much worse! <_<


Melissa

1996- (mis)Diagnosed with IBS. Depression/Anxiety disorder

2003 - Chronic anemia of unknown origin

2007 - Miscarriage for unknown reasons, (?celiac related)

Feb 2011 - positive ttg

April 2011 - endoscopy positive with visable damage, (scalloping/decrease folds)

- Biopsy marsh 3, gastritis, (other things I cant understand lol)

April 20th 2011 - Gluten free

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I don't know what kind of damage correlates with what Marsh score, but I do believe that regardless of the severity of the damage to your intestine your recovery time will depend on

1. How strictly you conform to the diet

2. How strictly you refrain from lactose during the recovery period

3. How many other (if any) intolerances you have and how quickly (if any) you find them out.

You seem to be a candidate for a strictly whole foods diet of meat, veggies, fruit, rice, nuts until you get a stable diet that you tolerate. Then add foods back in one at a time, avoiding the top eight allergens such as corn, peanuts, eggs, fish,soy, etc. Cook your vegetables, peel the skins off apples, pears, tomatoes, all those tough hard to digest skins, and let your GI system settle down for a little bit. :)


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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That sounds like pretty severe loss, but I don't think you can directly tell a Marsh score from that macro-level description (which would be based on photos/doctor's view).

Edit: Yes, that is a typical assessment for celiac disease. Anecdotally, when an MD sees that even when endo'ing for another reason, they know to take biopsies for the micro (villi) view of celiac disease damage.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Thank for responding

How can I get more info on the "Whole food diet" that is mentioned? Maybe I need to do it because I am getting worse despite a gluten free diet.


Melissa

1996- (mis)Diagnosed with IBS. Depression/Anxiety disorder

2003 - Chronic anemia of unknown origin

2007 - Miscarriage for unknown reasons, (?celiac related)

Feb 2011 - positive ttg

April 2011 - endoscopy positive with visable damage, (scalloping/decrease folds)

- Biopsy marsh 3, gastritis, (other things I cant understand lol)

April 20th 2011 - Gluten free

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Thank for responding

How can I get more info on the "Whole food diet" that is mentioned? Maybe I need to do it because I am getting worse despite a gluten free diet.

The whole food diet we speak of is simply food in it's natural form. Meat, chicken, fish, eggs, veggies and fruits, potatos and rice etc. that are not processed or premade. If stuff is in it's natural form when we cook it then the risk of cross contamination from food processing is pretty low.

Do make sure you have changed out stuff like your toaster, wooden cutting boards and utensils and scratched non stick pans as gluten can get us from stuff that has been used for gluten foods.


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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Thank for responding

How can I get more info on the "Whole food diet" that is mentioned? Maybe I need to do it because I am getting worse despite a gluten free diet.

Hello!

I am new here too, diagnosed January 25/11. I am going through a rather nasty period of illness right now going on 7 weeks with a so far accumulated weight loss of over thirty pounds. I believe this happened because I seem to not be responding to the gluten free diet. That, or I am doing something wrong or getting cross contaminated in some way... I seem to be on the upward swing of things now thank goodness, and thanks to those here who have given me sound advice and their shoulders to cry on! I just wanted to let you know that I am following the "whole foods" diet myself and that along with some excellent probiotics appears to be turning things around for me. Good luck to you, the whole foods is a great idea until you get a handle on the whole thing!

Dee

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