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Test results


Tko2341

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Tko2341 Rookie

Hi. My dr said I tested positive for Celiac Disease though a blood test. They didn’t say to have an endoscopy or any further testing. What I read says you need that to be certain. They also didn’t suggest a follow up appointment. Just said to stay away from gluten.  Do my results make it absolute that I have it? Should I still see a gastroenterologist to assess the damage to my intestines?   IGA says positive  Gliadin Iga Ab says 69.9 and Tis.Transglut Ab Iga says 100.8. 


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ch88 Collaborator

I am not very familiar with celiac test numbers. I think you are right, though about needing a biopsy to know for sure if you are celiac or not. 

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squirmingitch Veteran

We would need the ranges on those lab #'s b/c not all labs have the same #'s. However, however, however, generally, normal lab #'s don't get any where near what you posted so yes, it does look like you're way over the top. Another however, the gold standard is positive blood work PLUS  positive endoscopic biopsy. You need to call your doc & ask if he/she has referred you to a gastroenterologist. You need to keep eating gluten every single day until the endoscopy is done. You don't need to eat more than a cracker or 2 or a single slice of bread but you do need to have it every day. 

lisas11lisa Apprentice

The main thing is getting with a Gastroenterologist asap....Yes..they will do ur scope..(U need to be monitored and tested regularly)..there was issues with my insurance at my initial diagnosis..and they wouldn't approve one..so I wouldn't go back on gluten to have it done later..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..Research everything!..and always always ck labels...Goodluck.

cyclinglady Grand Master

You are correct.  All celiac centers in the U.S. still recommend a biopsy to diagnosis celiac disease, in addition to the celiac antibodies blood tests.  There are a few exceptions.   Share these links with your PCP if he/she is refusing to refer you to a Gastroenterologist.  Document.  If your PCP is not supportive, get a new one.  If he can not google how to diagnose celiac disease, then he/she might miss some other critical diagnosis — like cancer!  

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Why get a biopsy? Because your GI can not only identify damaged villi, but can rule out other GI issues or identify ones in addition to celiac disease.  You can have more than one issue (e.g. Crohn’s, H. Plyori, ulcers, cancer, etc.)  An endoscopy will give you a baseline.  Take me for instance.  My original endoscopy confirmed celiac disease.  I was having problems this year.  Had another endoscopy.  My small intestine healed, but now I have chronic gastritis which I did not have before.  I thought my source of my current symptoms was due to celiac disease but it was not.  A baseline is important!  

 

cyclinglady Grand Master
3 hours ago, lisas11lisa said:

The main thing is getting with a Gastroenterologist asap....Yes..they will do ur scope..(U need to be monitored and tested regularly)..there was issues with my insurance at my initial diagnosis..and they wouldn't approve one..so I wouldn't go back on gluten to have it done later..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..Research everything!..and always always ck labels...Goodluck.

Lisa,

Congratulations on a healing from celiac disease.  I am so sorry that your doctors now may not believe your initial diagnosis!  My comments are not directed to you, but to others who might be in the same boat.  Document!  Maintain and keep all your medical records.  I changed medical providers a few years back.   When I had my first visit, I presented my PCP and GI with a print out of my endoscopy notes and laboratory records going back many years.  This eliminated the need to retest and no doctor has doubted me.  My hubby went Gluten Free 17 years ago per the poor advice of his PCP and my allergist.  Well, it worked, but now they look at him as if he was a gluten free celebrity nut!  Not really, but you wonder if they really believe him.  I think his doctors do, because I am there to insist that he has a gluten sensitivity and that it is too bad there is not a test developed yet if you have been on a gluten free diet for decades.   

Again, Lisa!  Congratulations!  

 

Gemini Experienced
19 hours ago, Tko2341 said:

Hi. My dr said I tested positive for Celiac Disease though a blood test. They didn’t say to have an endoscopy or any further testing. What I read says you need that to be certain. They also didn’t suggest a follow up appointment. Just said to stay away from gluten.  Do my results make it absolute that I have it? Should I still see a gastroenterologist to assess the damage to my intestines?   IGA says positive  Gliadin Iga Ab says 69.9 and Tis.Transglut Ab Iga says 100.8. 

Those figures are very high and strongly point to Celiac.  If your doctor had done a full Celiac panel and the rest of the testing came back positive, then you wouldn't need a biopsy for diagnosis but to check on level of damage.  But they did not do a full panel so if you need more convincing than what they have done, you would progress to a biopsy.  You need to find someone who actually knows this.  Find a good GI so they can make sure you get a definitive diagnosis but it looks like you do have it.  Good luck!


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ravenwoodglass Mentor
7 hours ago, lisas11lisa said:

..just had one 6 years gluten-free..and they r saying NO SIGN OF Celiac Disease..I know I have it and will NEVER GO BACK TO EATING GLUTEN..

That means you healed. That's good. Did you ask the doctor to clarify what they meant? My GI said the same thing to me but then told me I was doing a good job on the diet. I still have Celiac as a diagnosis on my record.  If you had testing and blood work was positive check your records and make sure that celiac is noted and ask your GP why not if it isn't.

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    • trents
      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
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    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
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