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How do I interpret my results??

Smyga

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Smyga Newbie
Smyga
Posted

I just got a celiac screen done and got my results back today. What does it mean?? Any help is greatly appreciated ?

 

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kareng Grand Master
kareng
Posted
22 minutes ago, Smyga said:

I just got a celiac screen done and got my results back today. What does it mean?? Any help is greatly appreciated ?

 

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Looks negative? What did the doctor say?

 

cyclinglady Grand Master
cyclinglady
Posted

Yep, negative, but you just had the screening test which is good, but does not catch all celiacs (like me ?).  Curious as to what your doctor will tell you.  You can request the rest of the celiac panel to be sure.  

Justpeachy Rookie
Justpeachy
Posted

I tested negative as well, but several months later broke out in what has been diagnosed (pending skin biopsy),  as dermatitis herpetiformis,  which is a manifestation of celiac. The bloodwork is helpful in a diagnosis but a negative result is not definitive. 

squirmingitch Veteran
squirmingitch
Posted

Justpeachy, get your doc to do a serum eTG aka TG3. Read, print out & take to doc:

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Smyga Newbie
Smyga
Posted
  • Author

Thank you all for replying. I have not heard from my doctor yet. They are very slow at responding to things. I took a pregnancy test and it took them 2 weeks to tell me the results... But I'm not sure if I can get other tests done because I am on Medicaid managed care with MVP Option. There are other tests they can do??

Smyga Newbie
Smyga
Posted
  • Author
On July 16, 2016 at 10:47 PM, squirmingitch said:

Justpeachy, get your doc to do a serum eTG aka TG3. Read, print out & take to doc:

Open Original Shared Link

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Open Original Shared Link
 

Thank you for the information. But I don't have DH. I have another skin issue that I'm not even sure what it's from. I've had it on and off all my life. I'll post a pic. 

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Smyga Newbie
Smyga
Posted
  • Author

Here's a pic of the skin condition. I have it on my inner elbows, and on the sides between my rolls, lol. I have noticed that it would go away in the winter and come back whenever it gets hot and especially humid. 

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    • Morgan Tiernan
      How to navigate living with dermatitis herpetiformis

      By Morgan Tiernan · Posted

      Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related?    As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising?    Thanks for all your help so far! I will keep you all updated on my journey! 
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

      By trents · Posted

      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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