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JWK

Hoping for definitive test results after "equivocal."

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I’m a 59-year-old woman who has had diarrhea for 30 days.  They did a gastroenteritis panel of 19 tests for viruses, bacterial infection, etc. and all came back negative.  I am currently on Cipro and Flagyl (3 days into a course of 10 days) just in case it’s a different bug.

I had a Celiac test 11 years ago when I was 48.  The results came back IgA Antibody TTG negative and IgG Antibody DGP positive (result was supposed to be under 20; mine was 39).  I recall trying to actually cut back on gluten before the test but they didn’t ask about my eating habits.  The doctor wrote a note: “Lab testing for Celiac Disease is equivocal.  If we want to evaluate this further it would require an upper endoscopy with a duodenal biopsy.”  I did not do further testing.  I see someone on this site reported that they have Celiac but only test positive for DGP.

My 84-year-old father has Celiac (diagnosed at age of 70).  I was surprised to learn, however, that he never had it confirmed through biopsy (must have just seen in blood results).  He is tall and quite thin and has never gained weight, so his outward physiology is consistent with the illness.  I don’t really understand Celiac disease but was surprised to see this “IgA” designation when I just looked back at my results and read about the disease online.  My son, 20 years old, was diagnosed with an IgA problem/deficiency when he was only a toddler.  Is that a smoking gun … or totally irrelevant?

I also have a history of periodic yellowish stools … but not right now.

The primary care doctor said I might need to do Celiac testing again if the antibiotics don’t clear this up.  If I am simply doing blood test again, I want to do it right.  I see there is something called a "challenge" test.

Would you be inclined to load up on wheat for the given stretch and then start with the blood test again?  (Which could mean diarrhea for a VERY long time).  Or, just argue that I should go straight to endoscopy?  I feel like if I am starting at square one with a blood test, I want to do it right and intentionally expose myself to gluten this time.  And, how does genetic testing fit into the picture -- or does it?

One final question: this diarrhea came on so fast and after I had been away from home for the night, so  at first I dismissed the Celiac possibility.  Does one usually see gradual symptoms or can it come on suddenly like this?

I am otherwise in good health, by the way.  I swim, cycle, play tennis — am very physically fit for 59.  My weight is good and I am not particularly tired.  But the diarrhea is really messing with my swim schedule!  (At least sheltering mostly in place keeps me close to a bathroom .....).

Thanks for any insight you can provide.  - JWK

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How much wheat/rye/barley are you eating at the moment? I can’t tell if you went gluten free after your test 11 years ago.

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"The IgA-tTG is the best choice for both the adult and most pediatric populations." https://www.questdiagnostics.com/home/physicians/testing-services/condition/celiac/starts_with_test/

Yes, you would need to be eating gluten liberally again before blood tests and/or endoscopy/biopsy are done to get accurate results. Not sure how long but I would think several weeks before testing. The blood tests are often definitive enough to make a confident diagnosis and many physicians are foregoing the endoscopy/biopsy if the serum values are convincing. If you have not had the done in eleven years I would certainly revisit that one.

The alternative is just to purge gluten from your diet as see if you don't improve medically. But realize it's not just about reducing gluten intake it is about eliminating it entirely. So you have to get serious about it making sure your read all commercially prepared food labels and also checking on your meds and supplements. You would need to educate yourself as to how gluten is hidden in commercially prepared foods and be on the lookout for cross contamination, particularly when eating out. Did you know for instance that most commercially prepared soy sauces have wheat in them and also most canned soups. It's a cheap thickener and a texturing agent.

As far as genetic testing goes, it can be helpful mostly for alerting close relatives that they may need to get tested for celiac disease rather than diagnosis. Whether or not insurance will pay for it is doubtful.

Edited by trents

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1 hour ago, JWK said:

I’m a 59-year-old woman who has had diarrhea for 30 days.  They did a gastroenteritis panel of 19 tests for viruses, bacterial infection, etc. and all came back negative.  I am currently on Cipro and Flagyl (3 days into a course of 10 days) just in case it’s a different bug.

I had a Celiac test 11 years ago when I was 48.  The results came back IgA Antibody TTG negative and IgG Antibody DGP positive (result was supposed to be under 20; mine was 39).  I recall trying to actually cut back on gluten before the test but they didn’t ask about my eating habits.  The doctor wrote a note: “Lab testing for Celiac Disease is equivocal.  If we want to evaluate this further it would require an upper endoscopy with a duodenal biopsy.”  I did not do further testing.  I see someone on this site reported that they have Celiac but only test positive for DGP.

My 84-year-old father has Celiac (diagnosed at age of 70).  I was surprised to learn, however, that he never had it confirmed through biopsy (must have just seen in blood results).  He is tall and quite thin and has never gained weight, so his outward physiology is consistent with the illness.  I don’t really understand Celiac disease but was surprised to see this “IgA” designation when I just looked back at my results and read about the disease online.  My son, 20 years old, was diagnosed with an IgA problem/deficiency when he was only a toddler.  Is that a smoking gun … or totally irrelevant?

I also have a history of periodic yellowish stools … but not right now.

The primary care doctor said I might need to do Celiac testing again if the antibiotics don’t clear this up.  If I am simply doing blood test again, I want to do it right.  I see there is something called a "challenge" test.

Would you be inclined to load up on wheat for the given stretch and then start with the blood test again?  (Which could mean diarrhea for a VERY long time).  Or, just argue that I should go straight to endoscopy?  I feel like if I am starting at square one with a blood test, I want to do it right and intentionally expose myself to gluten this time.  And, how does genetic testing fit into the picture -- or does it?

One final question: this diarrhea came on so fast and after I had been away from home for the night, so  at first I dismissed the Celiac possibility.  Does one usually see gradual symptoms or can it come on suddenly like this?

I am otherwise in good health, by the way.  I swim, cycle, play tennis — am very physically fit for 59.  My weight is good and I am not particularly tired.  But the diarrhea is really messing with my swim schedule!  (At least sheltering mostly in place keeps me close to a bathroom .....).

Thanks for any insight you can provide.  - JWK

Much of what you describe sounds like my situation at exactly the same age (occasional yellow stools, a month of diarrhea and occasional vomiting that landed me in the hospital with dehydration.) Doctors never even thought to check for celiac - they just rehydrated me and had me eat the BRAT diet... and tested for lots of viruses that I did not have. Then they just shrugged and sent me home.  My celiac disease was discovered because they told me I should probably have an upper endoscopy and colonoscopy because I had never had one. The diagnosis was a total surprise though my dad had diabetes and his mom had MS - both on the same gene area - and I had, throughout my life had at least a dozen related issues, such as frequent skin rashes, dental issues, a pituitary microadenoma, early arthritis, etc., none of which were definitive celiac indicators on their own.

The biopsy is simple and definitive. I do read about lots of people whose blood tests were unclear. At this point, I would not fool around. My advice - skip directly to the endoscopy and biopsy. The damage to the cilia will be obvious if you have celiac disease. At your age, a colonoscopy would be recommended anyhow. An upper endoscopy will give them a look at your small intestine and easily answer whether you have celiac damage.  

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@JWK a positive DGP IgA?  That was me.  I think your doctor thought that you needed positives on all the celiac tests.  I have never had a positive on the TTG or EMA tests.  I am not IgA deficient.  I am biopsy confirmed.  

My diagnosis was a shock.  I had no GI symptoms.  I did have life-long anemia, but that was blamed on “heavy periods” (whatever that is supposed to mean).  I do have a genetic anemia that masked my iron-deficiency anemia.  It was not until I hit menopause when my doctors wondered why I was still low on iron (ferritin stores).  I consulted a GI only because I wanted a colon cancer screening because all my friends were getting them.  I was shocked when my new GI suggested celiac disease. I was fit.  Heck, I was in great shape.  Even managed a 1/2 marathon despite being anemic and of course, cycled century rides (granted no very fast but I thought it was due to aging).  
 

A recent study out of Mayo Clinic indicates that your risk for celiac disease is about 44% with a first-degree diagnosis celiac relative.   Being IgA deficient, can mess with celiac test results.  About 10%, if I recall, of celiacs are IgA deficient.  I am the opposite as my IgA is very elevated.  But for your son, if his IgA is close to zero, the celiac disease tests (used as a control test in this case) might not work.  A just “out of range”  IgA result should not impact the DGP, TTG or EMA tests (IgA versions).  Know too, that some celiacs are seronegative.  An endoscopy might be your best best.  Talk to a GI.  A challenge would be just two weeks if going directly to endoscopy.  

I am  not sure about celiac disease coming on so suddenly.    What might be an issue is concurrent issues like SIBO or Crohn’s, which your GI can check while doing an endoscopy.  Just taking the antibiotics can help resolve SIBO, but it might come back if the root cause (maybe celiac disease) is not found.  He/she can also check your gallbladder (non-functioning) pancreas and liver — all which can be impacted by celiac disease as celiac disease is systemic.  
 

Please research the CIPRO.  I had horrible side effects.  This drug has a black box warning which is the highest warning the FDA can issue.  The worse side effect?  Spontaneous snapping tendons.  Horrible for runners to be crippled for life.  While this drug can be a lifesaver, I have to be dying before I take this drug again.  It is in my chart listed as an allergy.    Please google CIPRO/FDA black box warning.

I hope this helps.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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Unfortunately, there aren't good alternatives for Cipro, the big gun of antibiotics, when other antibiotic options have failed or for some conditions.

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Yes, Celiac symptoms and the dreaded diarrhea can come on VERY FAST.  That was my experience.  You will be nervous if you are not near a bathroom.  Taking antibiotics like those when you have tested negative for pathogens will make it worse.......if you actually have Celiac.       

Also, the biopsy is not definitive.  Your small intestine, if stretched out flat, is the size of a tennis court........really!  If damage is patchy, it can be easily missed.  They need to take a lot of samples, if you have one done. 

Your father has Celiac so that puts you in the high risk group.  Genetic testing can be a useful tool to add to the picture.  But it does not diagnose you, only lets you know if you have the genetic predisposition to trigger for it....which you kind of already have as your father has it.

Good luck!

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13 minutes ago, trents said:

Unfortunately, there aren't good alternatives for Cipro, the big gun of antibiotics, when other antibiotic options have failed or for some conditions.

True, but I bet the OP was not advised of the side effects.   What actually was her diagnosis for the diarrhea?   It seems they do not know.     I Experienced a horrible side effect (neuropathy — imagine a bee inside your foot buzzing causing electrical jolts) that lingered for six months after my gallbladder surgery.  It was like something out of an old B science fiction 1950s movie.  Neuropathies is also a side effect as is aortic artery damage which was recently added to the black box warning.  But I worried about the tendons snapping even more.  I am active!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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1 hour ago, RMJ said:

How much wheat/rye/barley are you eating at the moment? I can’t tell if you went gluten free after your test 11 years ago.

 

2 hours ago, RMJ said:

How much wheat/rye/barley are you eating at the moment? I can’t tell if you went gluten free after your test 11 years ago.

I did not go gluten-free ten years ago (or since).  I had the sense that if my doctor had felt that I might have Celiac, he would have urged me to move forward with the endoscopy.  Maybe my symptoms weren't bad enough at the time to put him in that position.  I think what may have ended up happening is that they did my 50-year-old (ie, first) colonoscopy to look around and it was clear so the doctor called it a day.  In terms of how much I eat now, a bit more because my son is home from college and we eat some carby things when he is around.  But when we are an empty nest, carbs are much lower in quantity (so, whereas a meal might have once had fish, veggie and noodles, no noodles when the kids are gone ... but more crackers / bread / etc. when kids are home).  But I kind of have the idea that if I am doing this blood test again, I want plenty of gluten to test it out.  In fact, it sounds as though from the remarks so far, if I am following correctly, one must have plenty of gluten simply for the endoscopy biopsy to come up positive?

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2 hours ago, trents said:

"The IgA-tTG is the best choice for both the adult and most pediatric populations." https://www.questdiagnostics.com/home/physicians/testing-services/condition/celiac/starts_with_test/

Yes, you would need to be eating gluten liberally again before blood tests and/or endoscopy/biopsy are done to get accurate results. Not sure how long but I would think several weeks before testing. The blood tests are often definitive enough to make a confident diagnosis and many physicians are foregoing the endoscopy/biopsy if the serum values are convincing. If you have not had the done in eleven years I would certainly revisit that one.

The alternative is just to purge gluten from your diet as see if you don't improve medically. But realize it's not just about reducing gluten intake it is about eliminating it entirely. So you have to get serious about it making sure your read all commercially prepared food labels and also checking on your meds and supplements. You would need to educate yourself as to how gluten is hidden in commercially prepared foods and be on the lookout for cross contamination, particularly when eating out. Did you know for instance that most commercially prepared soy sauces have wheat in them and also most canned soups. It's a cheap thickener and a texturing agent.

As far as genetic testing goes, it can be helpful mostly for alerting close relatives that they may need to get tested for celiac disease rather than diagnosis. Whether or not insurance will pay for it is doubtful.

Hmm.  My IgA-tTG was negative last time.  Don't know if it is because I backed off slightly before the test last time or if, like Cyclinglady, I am just not going to test positive on that one.  I don't want to go and do that (albeit simple) blood test and have the whole thing brushed aside (again).  It sounds like one must eat a lot of gluten before endoscopy ....... so it is not just that they go in and can spot signs of it and/or the biopsy shows damage.  I assume the only way to get a genetic test, irrespective of whether insurance pays, is to have the doctor order it up?  I am wary of getting a full 23andme test, if they are still doing them.  But would be happy to get a genetic test that is exclusively Celiac.

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1 hour ago, joyced said:

Much of what you describe sounds like my situation at exactly the same age (occasional yellow stools, a month of diarrhea and occasional vomiting that landed me in the hospital with dehydration.) Doctors never even thought to check for celiac - they just rehydrated me and had me eat the BRAT diet... and tested for lots of viruses that I did not have. Then they just shrugged and sent me home.  My celiac disease was discovered because they told me I should probably have an upper endoscopy and colonoscopy because I had never had one. The diagnosis was a total surprise though my dad had diabetes and his mom had MS - both on the same gene area - and I had, throughout my life had at least a dozen related issues, such as frequent skin rashes, dental issues, a pituitary microadenoma, early arthritis, etc., none of which were definitive celiac indicators on their own.

The biopsy is simple and definitive. I do read about lots of people whose blood tests were unclear. At this point, I would not fool around. My advice - skip directly to the endoscopy and biopsy. The damage to the cilia will be obvious if you have celiac disease. At your age, a colonoscopy would be recommended anyhow. An upper endoscopy will give them a look at your small intestine and easily answer whether you have celiac damage.  

I think they will probably argue (rightfully) to repeat that blood test but I agree that I need to get the endoscopy this time.  Yes, I am concerned about the dehydration.  They did a blood panel too and they said they could tell I was not dehydrated at that point .... but that was two full weeks ago!  I am worried I am going to run out of "juice" and land in the hospital like you did.

 

4 minutes ago, JWK said:

Hmm.  My IgA-tTG was negative last time.  Don't know if it is because I backed off slightly before the test last time or if, like Cyclinglady, I am just not going to test positive on that one.  I don't want to go and do that (albeit simple) blood test and have the whole thing brushed aside (again).  It sounds like one must eat a lot of gluten before endoscopy ....... so it is not just that they go in and can spot signs of it and/or the biopsy shows damage.  I assume the only way to get a genetic test, irrespective of whether insurance pays, is to have the doctor order it up?  I am wary of getting a full 23andme test, if they are still doing them.  But would be happy to get a genetic test that is exclusively Celiac.

 

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1 hour ago, cyclinglady said:

@JWK a positive DGP IgA?  That was me.  I think your doctor thought that you needed positives on all the celiac tests.  I have never had a positive on the TTG or EMA tests.  I am not IgA deficient.  I am biopsy confirmed.  

My diagnosis was a shock.  I had no GI symptoms.  I did have life-long anemia, but that was blamed on “heavy periods” (whatever that is supposed to mean).  I do have a genetic anemia that masked my iron-deficiency anemia.  It was not until I hit menopause when my doctors wondered why I was still low on iron (ferritin stores).  I consulted a GI only because I wanted a colon cancer screening because all my friends were getting them.  I was shocked when my new GI suggested celiac disease. I was fit.  Heck, I was in great shape.  Even managed a 1/2 marathon despite being anemic and of course, cycled century rides (granted no very fast but I thought it was due to aging).  
 

A recent study out of Mayo Clinic indicates that your risk for celiac disease is about 44% with a first-degree diagnosis celiac relative.   Being IgA deficient, can mess with celiac test results.  About 10%, if I recall, of celiacs are IgA deficient.  I am the opposite as my IgA is very elevated.  But for your son, if his IgA is close to zero, the celiac disease tests (used as a control test in this case) might not work.  A just “out of range”  IgA result should not impact the DGP, TTG or EMA tests (IgA versions).  Know too, that some celiacs are seronegative.  An endoscopy might be your best best.  Talk to a GI.  A challenge would be just two weeks if going directly to endoscopy.  

I am  not sure about celiac disease coming on so suddenly.    What might be an issue is concurrent issues like SIBO or Crohn’s, which your GI can check while doing an endoscopy.  Just taking the antibiotics can help resolve SIBO, but it might come back if the root cause (maybe celiac disease) is not found.  He/she can also check your gallbladder (non-functioning) pancreas and liver — all which can be impacted by celiac disease as celiac disease is systemic.  
 

Please research the CIPRO.  I had horrible side effects.  This drug has a black box warning which is the highest warning the FDA can issue.  The worse side effect?  Spontaneous snapping tendons.  Horrible for runners to be crippled for life.  While this drug can be a lifesaver, I have to be dying before I take this drug again.  It is in my chart listed as an allergy.    Please google CIPRO/FDA black box warning.

I hope this helps.  

Yes, I saw on a post what you said about being DGP positive and not IgA positive and wondered if I could be the same (inferring this is why my tests came back "equivocal" ... and from your information, I am piecing together that one can have Celiac from having DGP-positive alone).  When you say they can check your liver and pancreas too .... do you mean they can do other tests (other than endoscopy) to check the other organs?  Yes, I know about the Cipro.  Thank you because the doctor I saw the other day who prescribed it did not even mention it!  The pharmacist at Walgreens told me.  I was familiar with the phenomenon.  I skipped my Peloton ride yesterday morning as there is a lot of up and down on the bike and am skipping tennis (and yes, I know it can affect you even after you quit the drug).  It tends to a problem more in men and happens more often during basketball, soccer and tennis, from what I have read.  I am swimming ... less stop-start on the tendons that are most likely to have a rupture.  But agree: nobody wants a black box.  Thank you.   Also, I will add: I can see from my notes that my son, when he was a year old, had an IgA result of 14 and it was supposed to be in the range of 24-121.  I also have an uncle (now 86) that has had lifelong debilitating arthritis.  He is rail-thin like my dad (Dad's older brother).  Stoic, wouldn't take the Celiac test but probably has it too.  

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45 minutes ago, Gemini said:

Yes, Celiac symptoms and the dreaded diarrhea can come on VERY FAST.  That was my experience.  You will be nervous if you are not near a bathroom.  Taking antibiotics like those when you have tested negative for pathogens will make it worse.......if you actually have Celiac.       

Also, the biopsy is not definitive.  Your small intestine, if stretched out flat, is the size of a tennis court........really!  If damage is patchy, it can be easily missed.  They need to take a lot of samples, if you have one done. 

Your father has Celiac so that puts you in the high risk group.  Genetic testing can be a useful tool to add to the picture.  But it does not diagnose you, only lets you know if you have the genetic predisposition to trigger for it....which you kind of already have as your father has it.

Good luck!

Thank you so much for this.  I will ask specifically about how many samples they will take.  I live five minutes from Stanford University Medical Center ... hopefully a good doc would do this procedure.  Very good healthcare here.

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8 minutes ago, JWK said:

Thank you so much for this.  I will ask specifically about how many samples they will take.  I live five minutes from Stanford University Medical Center ... hopefully a good doc would do this procedure.  Very good healthcare here.

Well, that certainly helps!  I live outside of Boston so we have pretty good health care here also.  At least they are more Celiac aware than when I was diagnosed.

For the dehydration, I drank Pedialyte for weeks.  It helps.  I can’t stand Gatorade......it tastes like sweat to me!  😝. The Pedialyte is more sweet than salty so it appeals to kids.

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I tested positive to only the DGP IgA test.  The control test, Immunoglobulin A was elevated, so in theory, all my celiac disease IgA test versions should have worked, but they did not.  I have had the complete celiac panel run many times.  Only the DGP IgA ever turns up positive so it is not a fluke.  It seems that only small babies typically test positive to the DGP and not the TTG.  I have yet to find a good explanation online and my GIs are perplexed too.  
 

I am not a doctor, but while your son might be consider immune deficiency, the celiac tests should work.  The result would practically have to be a zero for the celiac IgA tests not to work per a lecture I heard from Dr. Sheila Crowe who used to be head of the GI Association and is a celiac disease expert.  But that was a while ago, so do not quote me on it.  Like I do for my kid, I insist on a full celiac panel, each and every time she is tested.  
 

The genetic test just rules out celiac disease.   It does not usually diagnosis it.   That is because 30% of the population has the genes but only a few actually develop celiac disease.  
 

I had no noticeable GI symptoms at the time I was diagnosed.  Just anemia (low hemoglobin).  Three months after my diagnosis, I broke several vertebrae doing nothing!  I had to stay off my bike for almost a year.  I was diagnosed with osteoporosis.  So please get a bone scan if you get a celiac disease diagnosis.  
 

other organs?  Celiac disease can impact those. Yes, other tests can be run.  For example, a HIDA scan can determine if your bile ducts are draining.  My aunt had stones after she had her gallbladder removed.  Another aunt had a collapsed bile duct.  

7 minutes ago, Gemini said:

Well, that certainly helps!  I live outside of Boston so we have pretty good health care here also.  At least they are more Celiac aware than when I was diagnosed.

For the dehydration, I drank Pedialyte for weeks.  It helps.  I can’t stand Gatorade......it tastes like sweat to me!  😝. The Pedialyte is more sweet than salty so it appeals to kids.

I agree about Gatorade.  🤢I use Nunn tablets.  No carbs, gluten free.    Plus, easy to pop into a water bottle.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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The driver behind my Celiac dx was elevated liver enzymes. My GP had no clue what was causing this but when I finally went to GI doc he tested me right away for celiac disease. After I then started the gluten-free eating journey, the liver enzymes normalized within 3 months. I surely was thankful that no lasting liver damage was done.

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46 minutes ago, trents said:

The driver behind my Celiac dx was elevated liver enzymes. My GP had no clue what was causing this but when I finally went to GI doc he tested me right away for celiac disease. After I then started the gluten-free eating journey, the liver enzymes normalized within 3 months. I surely was thankful that no lasting liver damage was done.

I appreciate the discussion around the blood test results.  My globulin is low and has now dropped out of range, though only slightly.  I see that it can be associated with Celiac.  Thankfully, liver enzymes are still ok for me. Thank you.  I am going to look around on this site and on the internet to learn more about low globulin.

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6 hours ago, Gemini said:

Yes, Celiac symptoms and the dreaded diarrhea can come on VERY FAST.  That was my experience.  

never had diarrhea … even when I was still eating gluten..  my stools have always been normal..   that's actually one of the reasons I didn't think I had celiac when I was trying to self diagnose myself before I was diagnosed with a Biopsy

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4 hours ago, trents said:

The driver behind my Celiac dx was elevated liver enzymes. 

same..  mine were elevated when I first went in to the Dr..   He was reading my bloodwork results and said bloodwork looks great.. then got down to Liver enzymes and saw they were elevated..   then a month later they dropped back down to normal...   Dr didn't know what was going on because all tests related to Liver came back negative..

it's the gluten

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4 hours ago, JWK said:

My globulin is low and has now dropped out of range, though only slightly. 

that's most likely from celiac..  you can be pretty sure you have Celiac...     your Dad has it...  its very hereditary

Just get an endoscopy..  its simple.. and you're asleep..

I'm surprised your dad was first diagnosed at age 70..   Is he still healthy?

 

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2 hours ago, DJFL77I said:

that's most likely from celiac..  you can be pretty sure you have Celiac...     your Dad has it...  its very hereditary

Just get an endoscopy..  its simple.. and you're asleep..

I'm surprised your dad was first diagnosed at age 70..   Is he still healthy?

 

Yes, my dad is a quite healthy at 84.  Follows the no-gluten diet to a T.  I think because he is slight and could not gain weight even if he tried, the doctor tested him.  They told him it was quite clear from his blood test results that he has Celiac so he did not need endoscopy.

One thing I want to understand is whether I need to continue with my gluten intake until I have an endoscopy.  I am confused by that in this discussion.  Are they looking for damage (certainly) or inflammation (which needs to be kept up by eating the wheat, etc. until they have a chance to look) or some other components such that it would be ok to ease up now on the gluten?  Maybe I will simply run down and get a Celiac blood test today ...... one can order any test online these days and have a blood draw at a national lab like Quest or Labcorp.  I am exasperated and not happy that I have another seven days of antibiotic ahead of me with no symptoms abating whatsoever.  Stanford Healthcare is going to say: finish antibiotic and then wait four days (they have already told me to schedule next visit at this interval) and then come back in and if symptoms are not gone, we will test for other things like Celiac.  But I am pretty worn down from the last 30 days (or maybe I am more emotionally worn down than physically).  And in the middle of the night it has all come back to me as far as what I was eating when this whole thing started a month ago: pizza for lunch (maybe special whole wheat crust?), "special" bread at a restaurant that night, avocado toast next morning, a croissant at a bakery for lunch, and then more of the leftover pizza in the car on the way home (symptoms started next day) ..... then tons of cooking this month to keep things interesting for my son while home from college, including pie crusts, homemade pizza dough, etc. ....all of this after a generally lower intake of gluten once the youngest went to college two years ago.  Perhaps after my gluten bender my body has finally just said "screw you" to me.  My dad has celiac, my uncle has arthritis, and my aunt (their sister) has Graves disease which is autoimmune.  Maybe a little genetic thing going on over there.

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4 hours ago, DJFL77I said:

never had diarrhea … even when I was still eating gluten..  my stools have always been normal..   that's actually one of the reasons I didn't think I had celiac when I was trying to self diagnose myself before I was diagnosed with a Biopsy

Many celiacs had minimal or no GI distress before diagnosis. That was me. But now that I have been gluten-free for some years I have less tolerance to gluten than when I was consuming it regularly. If I get glutened now, I get violently ill with vomiting and diarrhea for hours.

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Yes, you need to be eating plenty of gluten prior to an endoscopy, for at least two weeks. A slice or two of bread per day should be enough.

If I were you, I’d get the blood test now, in the manner you mentioned, so that if negative because you’re gluten light it won’t be in your medical records.  If doctors saw a negative result they might stop looking for celiac.  If negative you could eat more gluten and retest in 8 to 12 weeks. It can take longer for antibody levels to be detectable by blood test than for intestinal damage to be detected by biopsy.

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1 hour ago, RMJ said:

Yes, you need to be eating plenty of gluten prior to an endoscopy, for at least two weeks. A slice or two of bread per day should be enough.

If I were you, I’d get the blood test now, in the manner you mentioned, so that if negative because you’re gluten light it won’t be in your medical records.  If doctors saw a negative result they might stop looking for celiac.  If negative you could eat more gluten and retest in 8 to 12 weeks. It can take longer for antibody levels to be detectable by blood test than for intestinal damage to be detected by biopsy.

 

1 hour ago, RMJ said:

Yes, you need to be eating plenty of gluten prior to an endoscopy, for at least two weeks. A slice or two of bread per day should be enough.

If I were you, I’d get the blood test now, in the manner you mentioned, so that if negative because you’re gluten light it won’t be in your medical records.  If doctors saw a negative result they might stop looking for celiac.  If negative you could eat more gluten and retest in 8 to 12 weeks. It can take longer for antibody levels to be detectable by blood test than for intestinal damage to be detected by biopsy.

Thank you so much, RMJ.  That is precisely what I was trying to understand.  It is lousy to eat the very thing that could be troubling you but I had two slices of wheat toast for breakfast.  Yes, totally agree on the testing ... if there is not enough gluten yet and I don't get a blood test result that indicates celiac, then they won't order the endoscopy and/or insurance will not pay for it, despite my test result from long ago.  In terms of expense, it is six of one, half dozen of the other.  Stanford's "list' prices are so over-the-top expensive that by the time we get down to the negotiated rate with my insurance company, that could still be far more than I pay out of pocket than simply ordering myself ($200 or less through Direct Labs for celiac testing).  My gastroenteritis panel was $1200 from Stanford negotiated down to $500 out of my pocket .... just for that panel alone.  Sadly,  it's expensive to be sick.  I appreciate the help. 

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