Is this a Real Celiac Diagnosis?

[Isthmus123]

Hello. I'm looking for some guidance. My ultimate question is do I need to get some more tests done at this point? I don't believe I have enough info for a celiac diagnosis but I have been mostly gluten-free on and off for a couple of years now.

1.  I was going to an integrative clinic for some nutritional sensitivity testing and my provider (a NP) discovered I was iron deficient. She then gave me a gene test and I was positive for one of those genes for Celiac. Given this information and some of my symptoms (mostly bloating and gas, occasional diarreah) she diagnosed with with Celiac. I also had trace amounts of red blood cells in my stool which I think she was concerned about.

2.  A couple of years ago I was having right abdominal pain/discomfort at the bottom of the  rib cage (later figured out this was muscular, I had an ultrasound and everything). At that time, I saw a GI doc who tested me some Celiac antibodies. I barely had eating any gluten in the weeks prior to that (maybe just a couples of pieces of bread or something). He said my antibodies were  not indicative of Celiac.

3. I am also dealing with hypothryoidism and I'm working on getting those levels right. So some of my other symptoms (fatigue, weight gain, some joint pain, etc). are likely related to that...

Do I have Celiac or do I not? It's really confusing when you get the diagnosis but you don't believe it because I haven't seen a positive antibody yet. I have some odd health problems over the years (large tumor on my ovary- benign, tumor in my thyroid- benign, and sudden right ear deafness) but I have no other diagnosis. I'm guessing I need to go to a GI doc who will test antibodies?

Giving up gluten is a HUGE commitment and I never stick to it for more than a few months. I believe I need to know once and for all if I have it or if I am at "high risk" for developing it (given the gene) and that will determine my diet. Any tips or help welcome!

[kareng]

38 minutes ago, Isthmus123 said:

Hello. I'm looking for some guidance. My ultimate question is do I need to get some more tests done at this point? I don't believe I have enough info for a celiac diagnosis but I have been mostly gluten-free on and off for a couple of years now.

1.  I was going to an integrative clinic for some nutritional sensitivity testing and my provider (a NP) discovered I was iron deficient. She then gave me a gene test and I was positive for one of those genes for Celiac. Given this information and some of my symptoms (mostly bloating and gas, occasional diarreah) she diagnosed with with Celiac. I also had trace amounts of red blood cells in my stool which I think she was concerned about.

2.  A couple of years ago I was having right abdominal pain/discomfort at the bottom of the  rib cage (later figured out this was muscular, I had an ultrasound and everything). At that time, I saw a GI doc who tested me some Celiac antibodies. I barely had eating any gluten in the weeks prior to that (maybe just a couples of pieces of bread or something). He said my antibodies were  not indicative of Celiac.

3. I am also dealing with hypothryoidism and I'm working on getting those levels right. So some of my other symptoms (fatigue, weight gain, some joint pain, etc). are likely related to that...

Do I have Celiac or do I not? It's really confusing when you get the diagnosis but you don't believe it because I haven't seen a positive antibody yet. I have some odd health problems over the years (large tumor on my ovary- benign, tumor in my thyroid- benign, and sudden right ear deafness) but I have no other diagnosis. I'm guessing I need to go to a GI doc who will test antibodies?

Giving up gluten is a HUGE commitment and I never stick to it for more than a few months. I believe I need to know once and for all if I have it or if I am at "high risk" for developing it (given the gene) and that will determine my diet. Any tips or help welcome!

First - having a gene for Celiac does not the mean you have Celiac.   

second - if you are eating gluten free, you won't make antibodies to gluten.  So the blood tests for  Celiac will likely be negative.

i hope you are actually going to an MD for the thyroid issues?  If not, please check with a doctor.  

 

Any doctor can do a blood test for Celiac.  So it you are seeing an endocrinologist for your thyroid, they can order that test.  That is a good place to start.  However, there is no point in doing the blood test if you are not regularly consuming gluten.

 

i will be back in a minute with some links to the info

 

 

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As for the red blood cells in your stool - that is a reason to see a GI.  Assuming the test for the red blood cells in the stool was legit.  

[TexasJen]

Karen is correct. The blood in your stool justifies a GI appointment. What if you have Crohn's or ulcerative colitis that is going untreated? It could even be something more serious.

 You definitely don't meet the criteria for Celiac at this point, but that doesn't mean you don't have it. 10% of celiac patients are seronegative (antibodies are negative but they still have the disease), so it sounds like you need an endoscopy anyway (due to blood in your stool). You can do a gluten challenge for 2-4 weeks before your endoscopy and they can answer both questions at the same time.

Good luck!

[Isthmus123]

Thanks both of y'all.  

Do know why I would get an endoscopy over a colonoscopy? Would it help if you knew the gut bacteria test I had ( this is where the red blood cells showed up)?

And yes I have an Endo but I'm getting a new one next month who takes insurance!

[kareng]

16 minutes ago, Isthmus123 said:

Thanks both of y'all.  

Do know why I would get an endoscopy over a colonoscopy? Would it help if you knew the gut bacteria test I had ( this is where the red blood cells showed up)?

And yes I have an Endo but I'm getting a new one next month who takes insurance!

You can get an enodscopy at the same time as the colonoscopy.  Endoscopy is usually to diagnose Celiac.  Colonoscopy would be to see why there is blood in your stool.  I thought the blood was in your stool?  Not sure a GI doctor will care about most of the " tests" that non- medical people run on you.

[TexasJen]

Actually, an endoscopy refers to any scope inside the GI tract. An esophagoduodenoscopy refers to a scope in the upper GI tract - esophagus, stomach, duodenum and a colonoscopy is a scope through the colon.  Typically, both are done when the diagnosis is blood in the stool as the blood can originate anywhere along the GI tract (or even in the sinuses/nasal passages). Typically, they are done at the same time to avoid repeat anesthesia, prep etc -  if you need both, of course.

You do have my curiosity peaked about "gut bacteria" test that tests for RBC. I am not sure what kind of test you are referring to.

[Isthmus123]

Well I was going to attach the copies of the test but it says the file is too large. The stool results are from a "Comprehensive Stool Analysis/Parasitology x3 test by Progressive Medical. Sample 1 had rare RBC, WBC, and Yeast. Sample 2 had Rare yeast. And Sample 3 had Rare RBC and yeast. The yeast amount is in the normal range but it doesn't say anything about RBC health. 

I'm not sure if a "rare" amount of RBC  (in my stool, yes) means anything but this holistic provider thought it meant I needed further investigation. She was also the one who diagnosed me with Celiac though. My grandfather did have colon cancer so maybe she is being precautionary. 

Other tests from 2017 (don't remember if I was eating gluten that week but I have been on and off for a few months):

Blood tests:

T-transglutaminase, IgA 4 (range 0-20)

IGa Antibody 186 (range 81-463)

Antigliadin Abs, IgA 12 (range 0-20) and the REticulin IgA and IgG were negative.

Stool tests:

Lysozyme 644 (range <600), indicates inflammation

Secretory IgA 150 (range 51-204)

Saliva test from 2014 (was eating gluten then):

sIgA 61.7 range (25.9-136.5)

Gliadin IgA (gluten) 18.6 H (normal <6.0)

Gliadin Antibody Ration 30.1 H (normal <22.4%)

This is pretty confusing... Please let me know what y'all think!

[cyclinglady]

The stool and saliva test are not considered to be valid by mainstream medical.  Helpful tools, but again, not recognized by the GI Association.  You need to be on a gluten diet for 8 to 12 weeks prior and then ask your endo or PCP for a celiac blood panel.  KarenG gave you a link that explains the testing.  

I certainly sounds like you should do the gluten challenge and get retested.  

I am officially diagnosed, but my hubby is not.  He went Gluten Free per the poor advice of two medical doctors.  It worked though.  He saw enough improvement to make him adhere to the diet for 16 years.  He never cheats on the diet.  I need my diagnosis since I did not have GI issues at the time of my diagnosis.  I could not believe that both of us would have gluten issues.

I hope you figure it out and your health improves!