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alexsami

Dr Said Villi Looked Normal

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Yes the biopsies could say something different as often the damage is not visible to the eye. I don't remember if you had positive blood work, if you did then you definately need the diet. If you didn't have positive bloods but you are done with celiac related testing now you do the diet strictly to 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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Yes the biopsies could say something different as often the damage is not visible to the eye. I don't remember if you had positive blood work, if you did then you definately need the diet. If you didn't have positive bloods but you are done with celiac related testing now you do the diet strictly to see if it helps.

i only had the elevated gliadin antibody

>11 normal

<18 positive

i had 16....equivocal range

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Sometimes when you fall in the equivocal range it means you are on your way there, you just haven't arrived yet :o It is definitely worth a trial of the diet even if your biopsy is negative.


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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When I had my endoscope done I had asked ahead of time for them to save and print out pictures for me. when I woke up my dr said everything looked fine and he would see me in 2 weeks to get the results, "don't worry about changing your diet". I took one look at the pictures and it was as if they went to google imaages and printed out a picture of classic celiac scalloping and mosaic pattern. I told him that I had already decided to try the diet and he said "oh, ok, well I'll see you in 2 weeks then". I didn't tell him when I got to my appt that I had already picked up a copy of the test results (I didn't want to "steal his thunder" :lol: I was shocked when he sat down and said it looks like you were negative for celiac! I asked him to see the pathology report and that was when he discovered he didn't have it yet, he had to call the hospital to get it faxed to him. well he came back in and apologized then he asked me if I felt any better on the diet. I told him yes, that I actually did. He was very happy, ordered bloodwork for vitamin deficiencies and even photocopied the lab results HIMSELF to give me a copy! I didn't have the heart to tell him I already had my own copy :P .

So I guess what I'm trying to say is that maybe your dr is just reluctant to diagnose until he's 110% sure!


"They're my villi, and I need them NOW!"

Positive Biopsy- 08/11

Slightly positive tTG only- 06/11

Negative blood panel- 11/05

Diagnosed with IBS- 1981

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thanks to all for your responses....this is just pretty frustrating.....i was also gluten free for a month prior to the endoscopy.....ate gluten the week before.....but he said if there is alot of damage....it would show up anyways.....just weird when you have alllllllllll the symptoms.....crazy......he said normal appearance of villi, but did send biopsies off.....i guess my question is could he be wrong

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Yes..he could be wrong. The small intestine is long. The scope doesn't reach all of it. It's very possible that you had villi damage outside of the scope's range.

Also, several samples need to be taken for inspection. Some damage is only obvious under the magnification of a microscope. It's maddening isn't it? :blink:

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Even if bloodwork and biopsies come back negative for Celiac, it doesn't necessarily mean that your body does not react to gluten. My bloodwork/biopsy was negative for Celiac. Yet other testing showed beyond any doubt that my body produces antibodies to gluten, which means my body sees it as a foreign invader. Not sure why gluten decided to attack me neurologically instead of intestinally, but it did. Perhaps in time I would have developed damage to my intestines, perhaps not - I'll never know. Because once I removed gluten from my diet there was no mistaking the change in my health and wellbeing and I'll never go back to eating it.

In fact there are MANY I've read about on this forum who know that gluten affects their gut, their brain, their skin, their thyroid, etc., but all blood and biopsy work come back negative for them. Clearly, there is still alot to learn about what gluten can do to a system that is intolerant. But here's the bottom line: whether current medical experts label you Celiac or Non Celiac Gluten Intolerant, it's still the same treatment. Eating gluten does damage to my body. And I am well since I removed it from my diet (along with dairy and soy).


K Wylee

Gluten Intolerant, Positive test, June 2010

Casein sensitivity, Positive test, June 2010

Reactive to soy, most processed foods & preservatives, June 2010

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thanks to all for your responses....this is just pretty frustrating.....i was also gluten free for a month prior to the endoscopy.....ate gluten the week before.....but he said if there is alot of damage....it would show up anyways.....just weird when you have alllllllllll the symptoms.....crazy......he said normal appearance of villi, but did send biopsies off.....i guess my question is could he be wrong

Yes being gluten free for a month could make a difference even with a week of adding it back in. Your doctor was wrong about that. How did you react to adding gluten back in? If you had issues when you added it back in for a week then your body is giving you the answer.


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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