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A brief history: I've always had stomach problems as a teen. In high school, I'd need to be excused from class right after lunch or during recess to use the restroom. I had a colonoscopy & was told everything was fine...probably stress. That was in the 1990s. My mother passed away from colon cancer at a young age & had VonRecklinghausen also. In my 20s, I was told I'm just lactose intolerant because milk/cheese made me bloated or I'd be in the restroom quickly. Fast-forward another 20 years to my early 40s & now I'm having rectal pain, frequent gas, a combo of constipation & diarrhea. A few weeks ago, bloodwork was completed & I was told I'm negative for the dual antigen for celiac disease but a "very weak positive" 28 (normal is 1-19) for a particular antigen (didn't say which) that I was told could be helped by going gluten-free. It use to be dairy that upset my stomach, but now even plain lunch meat wrapped in lettuce w no sauce also upsets my stomach. Soda also causes brutal reactions. If it's just a weak positive but the dual's negative, could I just be sensitive rather than actually having celiac disease? I had a colon CT done as well & am awaiting results & a colonoscopy's coming soon as well. 

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Can you post the test results?  (It is your right  really to have them in your possession).    Why?  I test positive to only the DGP IgA test on the complete celiac panel.  I have never had a positive TTG or EMA which is odd and this has happened repeatedly.    However, an endoscopy (not colonoscopy) to obtain small intestinal biopsies revealed damage.  I had celiac disease.  

You must be on a full gluten diet months prior for all testing to work.  If you go gluten free now, you may never get a diagnosis.  

Seth is right, it could be something else like Crohn’s (or both..) but I suspect with your mother’s cancer (I am sorry she died), your doctors are just focusing on the colon.  Consider a second opinion.  

Edited by cyclinglady

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I do not get it.  You have a positive dual antigen.  The result was 26 and the range was 0 to 19 (is my math off?)   Did they go forward and order the TTG IgA and DGP IgA?  Even so, you still had a positive on the DGP IgG.  Your GI should probably order a genetic test to help rule out celiac disease.  If you are getting another colonoscopy soon, why not get an endoscopy (scopes from both ends)?  Something is not making sense.

Know that you have to be on a full gluten diet two weeks prior to an endoscopy.  It sounds like they told you to go gluten free.  Why are they not following the Gastroenterologist Association’s algorithm for diagnosing celiac disease?  

Based on what you presented, you may have celiac disease.  I would find another GI who is celiac disease savvy.  

A weak positive is a positive.  Like are you pregnant or not?  Weak might mean to them that you did not test positive to all the celiac tests, but you only need one to move forward to an endoscopy.  That happened to me and the endoscopy found a lot of damage!  Again, consider another GI. 

By the way, if your gut is damaged, digesting anything can be painful.  

 

Edited by cyclinglady

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I do not get it.  You have a positive dual antigen.  The result was 26 and the range was 0 to 19 (is my math off?)   Did they go forward and order the TTG IgA and DGP IgA?  Even so, you still had a positive on the DGP IgG.  Your GI should probably order a genetic test to help rule out celiac disease.  If you are getting another colonoscopy soon, why not get an endoscopy (scopes from both ends)?  Something is not making sense.

Know that you have to be on a full gluten diet two weeks prior to an endoscopy.  It sounds like they told you to go gluten free.  Why are they not following the Gastroenterologist Association’s algorithm for diagnosing celiac disease?  

Based on what you presented, you may have celiac disease.  I would find another GI who is celiac disease savvy.  

By the way, if your gut is damaged, digesting anything can be painful.  

 

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Still it is a positive and is worth some investigation.  The algorithms say positive, not weak positive or high positive.  Not all celiacs have high numbers.  And there is no correlation (oddly enough) to the result and the severity of intestinal damage.  Use the search box with the forum and you will see many members with a weak positive and yet they had intestinal damage.  Your result does not need to be “10 times over the range”.  If your numbers were that high, you might not need an endoscopy.  

Here is what your ARUP lab had to say:

Celiac Disease Dual Antigen Screen
19 Units or less Negative - No significant level of detectable IgA or IgG antibodies against human tissue transglutaminase or gliadin peptide.
20 Units or greater Positive - Presence of IgA and/or IgA antibodies against human tissue transglutaminase and/or gliadin peptide; suggests possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis.

https://ltd.aruplab.com/Tests/Pub/2008114

Edited by cyclinglady

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Hmm you have a lot of similarities

I was told my GI issues were stress

Then in my 20s I was labeled IBS

Spent many years in my 20s with in addition to my IBS, few bouts of gastroenteritis, the time I doubled over from milk a clinic sent me to er thinking appendix.  

By my 30s they were giving me colonscopies because of relatives. I could go on I'll spare you.

In 2016 is when I was given an endoscope. I couldn't finish my 2 week challenge, but was told to go gluten free and live like a celiac removing gluten from my home.

In closing my cousin who I was often concerned required too much mallox etc when we were young had a hard time finding a Dr to endoscope her several years before me, but in the end she was confirmed a celiac. I know realize we both suffered long before our diagnosis'.

Post challenge difficulty eating even gluten-free  is not unheard of . Gi Tract is leaky and many of us get many food intolerances. Many of us when we find the right Dr / team are told to carry out an elimination diet and journal etc.

Sometimes not all Drs can see the forest through the trees. 

May you, as the above posters suggest, find one who can think outside your current conditions and family history. (As these factors kept many of undiagnosed for quite sometime.)

I hope you find a Dr who can see the forest and the trees. 

Best wishes on diagnosis and in your healing journey.

 

Edited by Awol cast iron stomach
Error removed sentence

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You definitely look like you are positive on blood work. 

For reference, my TTG IgA was 8 , when 1-3 is normal. That's considered weak as well. 

Then I had the biopsy and was marsh 3b 

After a week of gluten-free diet they did more labs:
 

deamidated gliadin abs, igg     42  Range: 0-19 units

deamidated gliadin abs, iga     73  Range: 0-19 units

 

Safe to say weak positive is positive.

 

Now you need the rest of the workup to confirm but the weak positive should spur your doctor to do the EGD and TTG IgA Deaminated tests too. 

 

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Yes, definitely push for the EGD so you get biopsy results. Positive is positive - there’s no “weak” or “strong” in disease diagnosis. Like when you take a pregnancy test, it’s either a plus or minus. Even if the plus is very light, you’re pregnant. Once you go gluten-free with your diet, the biopsy will be sketchy. You deserve a clear diagnosis. 

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Could someone who is more familiar with numbers help me to interpret mine since the doctor did not? Got these results last week and was told to go gluten-free. No endoscopy or further testing needed because it is probable that I have celiac due to positive antibodies. My symptoms are mild with occasional stomach issues. 

My Gliadin Peptide Ab Igg was 3

Gliadin Peptide Ab Iga was 100

(Ttg) Ab Igg is 3

(Ttg) Ab Iga was 1

Thanks

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7 hours ago, KimMCG said:

Could someone who is more familiar with numbers help me to interpret mine since the doctor did not? Got these results last week and was told to go gluten-free. No endoscopy or further testing needed because it is probable that I have celiac due to positive antibodies. My symptoms are mild with occasional stomach issues. 

My Gliadin Peptide Ab Igg was 3

Gliadin Peptide Ab Iga was 100

(Ttg) Ab Igg is 3

(Ttg) Ab Iga was 1

Thanks

Hi Kim! We can't tell just by what you posted. Every lab has different reference ranges so we would need those ranges. Can you please post those?

Also, it doesn't matter if you have mild or severe intestinal symptoms as over 50% of diagnosed celiacs did not present with any GI symptoms at all. There are some 300 symptoms associated with celiac disease & they (obviously) aren't all intestinal symptoms even though the internet tends to copy & paste so just about every reference you read on celiac says diarrhea. That's not even close to the whole picture!

You need to KEEP EATING GLUTEN EVERY DAY & find yourself a new GI who is knowledgable in celiac disease & get endoscopic biopsies for celiac disease. Why? Because that, along with positive blood work is the gold standard for diagnosis. You see, if you go gluten free now; at some point in your life, a different doctor will throw out your diagnosis b/c you DIDN'T get a "proper" diagnosis. It's happened all too many times. Then, you will have to eat gluten again in order to go through an endoscopy to prove you are indeed celiac. Why does that matter? Do you have kids or do you intend to have kids? Even if you don't, you still have 1st degree relatives & celiac is a genetic disease. All your 1st degree relatives should be tested whether they have symptoms or not. If doctors don't believe you really have celiac disease, then you will have a rough to impossible time getting your kids tested. 

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13 hours ago, KimMCG said:

Could someone who is more familiar with numbers help me to interpret mine since the doctor did not? Got these results last week and was told to go gluten-free. No endoscopy or further testing needed because it is probable that I have celiac due to positive antibodies. My symptoms are mild with occasional stomach issues. 

My Gliadin Peptide Ab Igg was 3

Gliadin Peptide Ab Iga was 100

(Ttg) Ab Igg is 3

(Ttg) Ab Iga was 1

Thanks

 

5 hours ago, squirmingitch said:

Hi Kim! We can't tell just by what you posted. Every lab has different reference ranges so we would need those ranges. Can you please post those?

Also, it doesn't matter if you have mild or severe intestinal symptoms as over 50% of diagnosed celiacs did not present with any GI symptoms at all. There are some 300 symptoms associated with celiac disease & they (obviously) aren't all intestinal symptoms even though the internet tends to copy & paste so just about every reference you read on celiac says diarrhea. That's not even close to the whole picture!

You need to KEEP EATING GLUTEN EVERY DAY & find yourself a new GI who is knowledgable in celiac disease & get endoscopic biopsies for celiac disease. Why? Because that, along with positive blood work is the gold standard for diagnosis. You see, if you go gluten free now; at some point in your life, a different doctor will throw out your diagnosis b/c you DIDN'T get a "proper" diagnosis. It's happened all too many times. Then, you will have to eat gluten again in order to go through an endoscopy to prove you are indeed celiac. Why does that matter? Do you have kids or do you intend to have kids? Even if you don't, you still have 1st degree relatives & celiac is a genetic disease. All your 1st degree relatives should be tested whether they have symptoms or not. If doctors don't believe you really have celiac disease, then you will have a rough to impossible time getting your kids tested. 

Here is the interpretation chart he sent me and yes I have 2 kids in which their pediatrician said they didn’t need to be tested unless they show symptoms which goes against everything I have read about symptoms being silent etc....

Is it possible to have positive antibodies show in blood test but get negative through endoscopy? What would that then mean? I am so confused and frustrated!!! 
Well it won’t let me attach file so it says IGE antibody <10 absent and >100 very high level.

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@KimMCG  What was the lab range for the Gliadin IGA result?  I assume it was any value over 20 since it seems pretty high in comparison to the other tests.  

Your IgE antibody range must be for some allergy testing (ragweed, cats, peanuts, etc) and not for celiac disease which uses IgA or IgG (Immunoglobulin A or G).  

Your gliadin result seems high (without the lab ranges it is hard to say for sure).  This means you should get a GI referral. You will most likely need an  endoscopy to obtain small intestinal biopsies and to rule out other concurrent illnesses like SIBO or H. Pylori.   You only need one positive on the panel to move forward.  Your result is pretty high, so not catching intestinal damage seems unlikely, but anything is possible.  

Once you have  a diagnosis, it is is easy to get your kids tested.  My kid has been tested twice since my diagnosis 6 years ago.  The first when she was asymptomatic right after my diagnosis and the second just before she was choosing a university.  

Personally, I test positive to only the Deamidated Anti-Gliadin Peptide (DGP IgA) and yet I had some pretty severe intestinal damage.  Anemia was my main symptom and I already had Hashimoto’s Thyroiditis which is another autoimmune disorder.  Even on repeat testing, I have never had a positive TTG or EMA.  

Edited by cyclinglady

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what i thought was anemia was my main symptom too. felt like a vampire was visiting me during the night. -TtG 137 though. 

they just need to make it a standard part of a physical. because say a kid has a father who yells at them every time they get sick, they're going to stop complaining about diarrhea before anyone knows there's a problem.

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1 hour ago, cyclinglady said:

@KimMCG  What was the lab range for the Gliadin IGA result?  I assume it was any value over 20 since it seems pretty high in comparison to the other tests.  

Your IgE antibody range must be for some allergy testing (ragweed, cats, peanuts, etc) and not for celiac disease which uses IgA or IgG (Immunoglobulin A or G).  

Your gliadin result seems high (without the lab ranges it is hard to say for sure).  This means you should get a GI referral. You will most likely need an  endoscopy to obtain small intestinal biopsies and to rule out other concurrent illnesses like SIBO or H. Pylori.   You only need one positive on the panel to move forward.  Your result is pretty high, so not catching intestinal damage seems unlikely, but anything is possible.  

Once you have  a diagnosis, it is is easy to get your kids tested.  My kid has been tested twice since my diagnosis 6 years ago.  The first when she was asymptomatic right after my diagnosis and the second just before she was choosing a university.  

Personally, I test positive to only the Deamidated Anti-Gliadin Peptide (DGP IgA) and yet I had some pretty severe intestinal damage.  Anemia was my main symptom and I already had Hashimoto’s Thyroiditis which is another autoimmune disorder.  Even on repeat testing, I have never had a positive TTG or EMA.  

Yes, it was a range of less than 20 so testing 100 was enough for my doc to say no more gluten. But then that was it....he will not refer to GI because it is probable I have it so I need to heal my gut. I do have small children (boys) but their pediatricians office says they do not need to be tested if not showing symptoms of any kind. So I’ve been gluten-free for a little over a week now and my plan was to just listen to my body. Right now it says...I’M SO HUNGRY!!!!! I’m pretty sure there is damage to the intestine since I tested + Iga so regardless I have to go Gluten free. 

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10 minutes ago, KimMCG said:

Yes, it was a range of less than 20 so testing 100 was enough for my doc to say no more gluten. But then that was it....he will not refer to GI because it is probable I have it so I need to heal my gut. I do have small children (boys) but their pediatricians office says they do not need to be tested if not showing symptoms of any kind. So I’ve been gluten-free for a little over a week now and my plan was to just listen to my body. Right now it says...I’M SO HUNGRY!!!!! I’m pretty sure there is damage to the intestine since I tested + Iga so regardless I have to go Gluten free. 

Just know that your doctor is not following standard diagnostic procedure for celiac disease.  Keep all your medical records and ask him to give you a letter stating you have celiac disease.  Someday, another doctor might not honor your diagnosis (like your children’s pediatrician).  If you have the diagnosis in writing share it with your pediatrician.  Many celiacs are asymptomatic.  Why wait until extensive damage is done?  

Take this new study into your pediatrician.  It revealed that first-degree relatives have a 44% chance of developing celiac disease.  

https://www.news-medical.net/news/20190822/Mayo-Clinic-Study-Calls-For-Screening-Of-Family-Members-Of-Celiac-Disease-Patients.aspx

I am sorry that you did not get an endoscopy.  Many celiacs do not based on financial or insurance limitations.  I get that.   It does make for a good benchmark for future problems.  It does rule out concurrent illnesses like SIBO, Crohn’s, and H.Pylori.  And even the best celiac disease experts agree that it is the Golden Standard in finalizing a celiac disease diagnosis.  But....if you respond to the diet and you have a written diagnosis, you should be good. 😊

Eat!  Your body needs nourishment!  

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I would find another Dr. or go straight to a GI specialist if that's possible. 

You need to have the EGD done in order to rule out other possibilities. Some of the antibody tests can be positive because of other autoimmune diseases. In other words, you may not have celiac disease but there's no way to be sure without the EGD. You wouldn't want to think you have celiac disease when it's another disease. Granted, many of the same diseases that cause positive celiac aby tests are improved with a gluten-free diet but there may be other treatments that could benefit you as well if you don't have Celiac Disease. 

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