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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/

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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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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