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Still Confused After Reading Up.


culinerdy

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culinerdy Newbie

I apologize if this is redundant, but I have been scouring the boards the last two days and googling the test result ranges.

Quick background: I was hospitalized with a horrible bout of what I thought was IBS and a stomach bug however that was never proven. Long story short, my GIdecided to check me for celiac disease by first ordering the blood work, and upon follow up after discharge, I was ordered a EDG with biopsies. I received my information verbally at my appointment and my numbers are:

IGA 175

TTG/IGG: 3.2

My doctor is on vacation for 1 month starting this week and the nurses are stumped on what the "Normal range" questions are for the tests. I have been scouring documents online but they do not provide range info. Since the nurses only gave me the info via phone, any of the questions I had (Such as range, other suggestions, general what the %&*!'s and other why is my body hating me questions) could not be answered.

Also with my biopsies, I did not receive a status as to the vili (such as my Marsh stage)just that they are "negative." I am so confused as I have responded well to a gluten-free diet over the last week and a half since my blood tests and biopsies.

I guess I am just looking for suggestions and guidence until my doc returns. Thank you for listening to my frustrations (and tears of confusion) in advance.


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GFinDC Veteran

HI,

That sux that he left you hanging like that. Does he have a partner or can you ask your primary doc to get the results and give them to you?

In the meantime if you are feeling better gluten-free then just stay on the gluten-free diet. It can't hurt you and if you are celiac or NCGI it can only help.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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kareng Grand Master

Get copies of the labs, the procedure report and the Pathology (biopsy) report.

culinerdy Newbie

Thanks gluten-free in DC - I appreciate all of your help.

Kareng - He is the only one in his office - I have requested a physical copy of the reports to be mailed to me and they are.

My primary doc is clueless (was my first call) on the whole thing and suggested to just wait it out. I started gluten-free about 2 weeks ago - and have tried to avoid gluten-free bread but Udi's is temptingly good.

Well I guess in all thoughts is to just wait it all out. I just think its a crock to have to wait a full month and not have a backup doctor who knows what they are doing.

kareng Grand Master

Thanks gluten-free in DC - I appreciate all of your help.

Kareng - He is the only one in his office - I have requested a physical copy of the reports to be mailed to me and they are.

My primary doc is clueless (was my first call) on the whole thing and suggested to just wait it out. I started gluten-free about 2 weeks ago - and have tried to avoid gluten-free bread but Udi's is temptingly good.

Well I guess in all thoughts is to just wait it all out. I just think its a crock to have to wait a full month and not have a backup doctor who knows what they are doing.

I said to get the copies so you can read them yourself. Obviously, the nurses are not reading them to you fully. Lab results come with a range (as ranges can be different at different labs because they measure differently).

We have had many on this forum who have read the reports themselves and found the doctor didn't know what he was saying. You will want to see how many biospies were taken and where they were taken from. Its possible he didn't biopsy the small intestine at all. Or he only did 1 specimen. When you have seen these reports, you will have more info.

Why can't you eat Udi's? I ate it when I first went gluten-free and did fine.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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