Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help with test results

Rebekah3

Recommended Posts

Rebekah3 Rookie
Rebekah3
Posted

My endocrinologist (I'm a type 1 diabetic) recently ran celiac tests on me, which came back 'positive for celiac'. What I'm curious about is if there is a range to how 'positive' one can be and with my values if there is a chance the biopsy (yet to be scheduled) will come back negative. I'm still eating gluten and my appt with the gastroenterologist is in about 2 weeks. AM i guarenteed to need the biopsy? What should I expect? Please express to me how important it is to not have even 'just a little' or anything like that. With the holidays coming and my pushy family, I need a reality check! My results are as follows:

 

ComponentStandard RangeYour Value
ENDOMYSIAL ANTIBODY IGANegative

Positive

ComponentStandard RangeYour Value
DEAMIDATED GLIADIN ABS, IGA0 - 19 units89
T-TRANSGLUTAMINASE (TTG) IGA0 - 3 U/mL67
IMMUNOGLOBULIN A, QUANT, SERUM91 - 414 mg/dL298
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

You are positive in every celiac test given.  (The immunoglobulin A was just a control test.) It doesn't get more positive than that.  The EMA IgA is 98% specific to celiac disease alone.  With two other positives, it is a sure thing that you have celiac disease.  :(

There's a good chance the doctor will still want to biopsy you. You can do it or not.  Three positive and T1D makes it a sure thing though.  Do whatever you are comfortable with.  Be aware though that a negative biopsy will just mean that they missed the damage. It would not mean that you are negative for celiac disease, it just wouldn't support the diagnosis.

You can never have a little bit.  You'll need to skip the butter if it has ever been used on regular bread. You can't use other people's toasters anymore.  You even have to be careful of gluten-free foods that people make for you because the something may have been contaminated or they slip up, like using soy sauce or using suar that had a flour coated measuring cup dipped into it once.  You can't even order french fries that were fried in an oil that was used on the breaded chicken nuggets. We're talking strict strict.  Check all medication strict. :(  It's a hassle but it will improve your health in the long run.

Best wishes.  I hope you have a speedy recovery and are seeing improvements by Xmas

squirmingitch Veteran
squirmingitch
Posted

There is no "I am a little celiac" just like there is no "I'm a little bit pregnant" --- you are or you aren't and you ARE celiac.

Here's a link to the Newbie 101 which will give you details on what you need to do to protect yourself & eat truly gluten free:

You can't have a tiny crumb of gluten - not 1. 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  I just want to add that all your first-degree relatives should be tested for celiac disease too.  It is genetic and you can be asymptomatic.  Celiac disease can be activated at any age! 

I wish you well!

Rebekah3 Rookie
Rebekah3
Posted
  • Author

Thank you all for the responses and the info! I have two little boys that I am going to push to be tested and I'm also going to let my parents and brothers know to look out for it as well. So it sounds like based on have all positive blood tests, I need to accept the diagnosis and move on to a Gluten Free life. Thanks so much for the support and stressing the importance of not having any gluten. not even a little bit! I'm a people pleaser, so this will be tough. I hate saying no and pushing back.... but I guess I need to learn! Thanks again!

squirmingitch Veteran
squirmingitch
Posted

Learn to say no and push back. Celiac disease, left untreated, can indeed kill you. I know you want to be around for your 2 little boys so for their sakes, learn to say NO firmly.

Also, I want to add to the info. of 1st degree relatives getting tested. Tested every 2 years ~~~ or sooner if symptoms present. Celiac can present anytime & that's why 1st degree relatives need to be tested on a regular basis.

Celiac is a very serious disease and yet we can easily treat it by simply not eating gluten. Amazing isn't it? No pills, no chemo, no shots; just keep gluten out of your diet. At first it's completely daunting & there is a very steep learning curve to the diet but after a while I guarantee it becomes second nature and you can look forward to feeling MUCH better!

squirmingitch Veteran
squirmingitch
Posted

Here are some links for you & you could print these out & give them to your relatives so they will better understand celiac disease and why you must be so vigilant in your diet as well as why they need to be tested and what symptoms are associated with it. Also, there are silent celiacs who present with ZERO symptoms yet still have the disease & damage to their gut so let them know that too.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And finally, give your family members a copy of the Full, current celiac disease blood panel so they can take it to their doctor & make sure they get the full panel because many doctors don't know (believe it or not) & end up just doing 1 or 2 of the blood tests. They need to do ALL of them:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

The DGP test was added recently to the full panel.


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rebekah3 Rookie
Rebekah3
Posted
  • Author

This is very helpful! Thank you! I feel more informed for my upcoming appointment with the gastroenterologist. And also more prepared for asking the pediatrician for testing. Thank you so much!

squirmingitch Veteran
squirmingitch
Posted

You're very welcome!:)

Don't hesitate to ask if you have any more questions. And please let us know how things turn out.

 

OH! And do NOT stop eating gluten until all testing is done & that includes an endoscopy of the doc wants to do one.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,950
    • Most Online (within 30 mins)
      7,748
    Malik
    Newest Member
    Malik
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cookiesyum
      Anyone else with very high HDL?

      By cookiesyum · Posted

      The easiest way to remember the difference between the cholesterol types is HDL;   H=healthy equals healthy (omega 3, 7, limit 6 & 9 MCFA'S =Medium Chain Fatty Acids. 3= coconut oil, 7= sunflower oil, avocado. The higher your HDL the healthier you are & less likely to experience strokes, clogged arteries Etc. You can even use cold expeller pressed coconut oil on your skin and that is the best kind of coconut oil to eat as well. You want your HDL much higher than your LDL, it will help you stay healthy.   LDL;    L=Lousy. Meat fats, processed fats.  The higher your LDL is the more likely you will have strokes, clogged artery is, heart disease, fatty liver.   Then there's lipids... they are the culprit to be blamed for many heart attacks and things like that they are very small round particles that transport fats. You can have a low overall cholesterol reading and most of it be healthy cholesterol and have a ton of lipids and there's nothing you can do to change the lipid count. High number of lipids is very dangerous.   I'm going on statins is extremely dangerous if you ask me it's just completely my opinion, because I have seen so many of my elderly friends bleed to death internally because of the statins. I mean you wouldn't take all the oil and grease out of your car or a motorcycle and then try to drive it that way would you? You see that's what statins do they remove all of your bodies fats and it doesn't matter whether it's healthy fats or a lousy fats. It removes all of them and then your body can't function properly. You have to have fats to keep your skin supple and to stay warm. Your body also needs fats to digest & process certain nutrients, amino acids & vitamins.   Your brain is composed of fat so is that something you really want to remove with a pill every morning and night?   The thing about statins is that they also make the blood vessels and capillaries permeable. So this is how my friends who were on cardiac medication for a long time and statins ended up bleeding internally to death.   If you want to make sure that your heart is healthy, take odorless garlic at night and magnesium, vitamin K & calcium.     
    • pdm1981
      Glutening symptom? oily stool

      By pdm1981 · Posted

      It's also a symptom of EPI.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned. I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten. Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac".  Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird. I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.  
    • Visionaerie
      Feel Good gluten free chicken soup dumplings

      By Visionaerie · Posted

      I get these but where we are, they are called chicken potstickers. I would obviously suggest that it is the ginger in the product that is causing a stimulative digestive effect! So you might want to do what I do, just cook one of them with the rest of your meal so you don't have the same effect. I love the Feel Good products but they are on the expensive side. (I also drink Reed's ginger brew so in general, ginger is a friend of mine..when delivered at the right dose). Hope this helps and have a warm healthy week!
    • ognam
      Glutening symptom? oily stool

      By ognam · Posted

      Has anyone had Steatorrhea (oily/fatty poop) as a temporary glutening symptom or should I be concerned I've introduced chronic gluten somewhere (like in meds)? I haven't gotten Steatorrhea since before I went gluten free. However, I moved in the past few weeks and haven't been as careful - I've eaten at restauraunts with cross contamination but only experienced minor symptoms like headache. The past week, I ate only gluten free food at home except I went to Red Robin and got fries (told them gluten-free; allergy). The next day I had Steatorrhea and the day after that.   I know it's a symptom of malabsorption so I was wondering if it was the kind of thing that could be caused by one event or if it was due to a more chronic issue. Of course I will speak to a GI but I recently moved and need to find one.   Thank you for any info
×
×
  • Create New...