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Blood Test Received -- Endoscopy Or Not?


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#1 clafran

 
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Posted 17 January 2013 - 09:09 PM

Hi everyone,

I am new to the forum, although I'm not completely new to Celiac/Gluten Intolerance. My mother is Celiac/DH, and was diagnosed about 4 years ago. She has been pushing for all of her children to get tested (2 down, 1 to go) since she is a first-degree relative. (FWIW, Mum is 70, I am 40, female, married).

I had my blood work done a few weeks ago, and I received the results. My family practitioner ordered the tests, even though I am not currently exhibiting any debilitating or outward symptoms -- as far as I can tell. The labs were done through Prometheus, and my printout has the following information:

DGP IgG = Positive (5.9 EU/ml, reference <4.9)
DGP IgA = Negative (4.6 EU/ml, reference <6.1)
TTG IgA = Negative (6.5 U/ml, reference <10.3)
EMA IgA = Positive
Total IgA = 143 mg/dl (reference >44-441 mg/dl)

Prometheus report adds that "Results support a diagnosis of celiac disease," and "Serological markers for celiac disease detected."

My FP was honest enough to tell me he wasn't sure how to interpret the results, and that he would be happy to refer me to a specialist.

I know that a biopsy/endoscopy is generally used to confirm findings, but since I have a first-degree relative with Celiac, and my EMA is positive, do I really need the endo?

Really, I'm in denial. Big time.

Thank you in advance for any advice or support you may be able to offer.
Best,
Cathy
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#2 GottaSki

 
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Posted 18 January 2013 - 04:58 AM

Welcome Cathy!

Your results are a bit confusing - the positive DGP is enough to know something is going on related to gluten ingestion. The positive EMA means there is damage to your small intestine. With family history and two positive antibody tests - that is celiac - in my opinion.

Your total IgA is within normal range, but interestingly in the lower end of normal which is quite similar to everyone in my family - we all test higher on IgG. You are missing the tTG-IgG. I highly suggest getting it run along with nutrient testing if you have not had it done as the malabsorption caused by celiac can be another important piece of the diagnostic puzzle.

The endo is up to you - I vote get it. The reason is this...you have no gastro symptoms - I would guess you may have some other symptoms that you never would think are caused by celiac. If your endoscopic biopsy reveals clear damage it makes it much easier to be fully compliant about removing ALL gluten - at least this was the case in the early days for me as some digestive problems resolved yet my autoimmune symtoms all got worse for a time which could have left me wondering if gluten was really the cause of my symptoms - for me the endo was far worse than my bloodwork. We are all different so read as much as you can and then decide if endoscopy is the next best step for you.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 clafran

 
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Posted 18 January 2013 - 08:23 PM

Welcome Cathy!

Your results are a bit confusing - the positive DGP is enough to know something is going on related to gluten ingestion. The positive EMA means there is damage to your small intestine. With family history and two positive antibody tests - that is celiac - in my opinion.

Your total IgA is within normal range, but interestingly in the lower end of normal which is quite similar to everyone in my family - we all test higher on IgG. You are missing the tTG-IgG. I highly suggest getting it run along with nutrient testing if you have not had it done as the malabsorption caused by celiac can be another important piece of the diagnostic puzzle.

The endo is up to you - I vote get it. The reason is this...you have no gastro symptoms - I would guess you may have some other symptoms that you never would think are caused by celiac. If your endoscopic biopsy reveals clear damage it makes it much easier to be fully compliant about removing ALL gluten - at least this was the case in the early days for me as some digestive problems resolved yet my autoimmune symtoms all got worse for a time which could have left me wondering if gluten was really the cause of my symptoms - for me the endo was far worse than my bloodwork. We are all different so read as much as you can and then decide if endoscopy is the next best step for you.

Hang in there :)


Thanks so much, Lisa. I will have my family doctor refer me to a specialist, and we'll proceed from there. I think you are spot-on with the non-digestive symptoms; my mother feels she has traced the majority of her "other" issues throughout her life (infertility/miscarriage, dental issues, osteoporosis, ad infinitum) to celiac. Worse, she suspects her own father had silent celiac, which ultimately took his life through intestinal cancer. I was 5 when he passed away. Celiac wasn't even a blip on the map in 1977, at least in our neck of the woods (suburban Midwest).
Thanks again. Glad to have found such a welcoming community!
Cathy
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#4 Madagascar

 
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Posted 18 January 2013 - 09:04 PM

interesting - i had labs done by Prometheus too and mine are almost the opposite of yours. Prometheus said I probably did not have celiac disease, but i'm certain i have it.

They showed my TTG IgA of 1.3u/ml, which is in the less than 10,3u/ml reference range.

however, the exact same blood sample was also tested by PeaceHealth Labs by accident (long story) and the TTG IgA came in at 29. their reference range was <20 none, 20-30 weak positive and >30eu was positive. I have the gene and my doc said with the TTG of 29, that was high enough to be sure. yours is much higher than mine.

i am still wondering if i should get the biopsy done but i've been gluten-free for 2 months and i don't know how quickly you heal.

i wish you the best figuring it all out! like you, i think my family has it on my mom's side, and i am nearly certain that my mom died from complications from it. it's better to know so we can, hopefully, avoid complications from it.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#5 clafran

 
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Posted 19 January 2013 - 08:39 AM

interesting - i had labs done by Prometheus too and mine are almost the opposite of yours. Prometheus said I probably did not have celiac disease, but i'm certain i have it.

They showed my TTG IgA of 1.3u/ml, which is in the less than 10,3u/ml reference range.

however, the exact same blood sample was also tested by PeaceHealth Labs by accident (long story) and the TTG IgA came in at 29. their reference range was <20 none, 20-30 weak positive and >30eu was positive. I have the gene and my doc said with the TTG of 29, that was high enough to be sure. yours is much higher than mine.

i am still wondering if i should get the biopsy done but i've been gluten-free for 2 months and i don't know how quickly you heal.

i wish you the best figuring it all out! like you, i think my family has it on my mom's side, and i am nearly certain that my mom died from complications from it. it's better to know so we can, hopefully, avoid complications from it.


Thanks so much! I really appreciate your input. Best of health for you, too!
~Cathy
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#6 nvsmom

 
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Posted 19 January 2013 - 04:06 PM

I would say if the endoscopy will help with your denial, then get it done but be aware that there is a chance that they will miss damaged areas if your intestinal damage is not yet excessive. The intestines have a really large surface area so if the damage is patchy, and the endo doesn't take enough samples (or isn't lucky) there is a chance that you'll end up with a negative biopsy.

I had two positive blood tests too, but that was enough for me since I did not want to undergo minor surgery for my own personal reasons. Like Lisa, my intestinal issues resolved fairly quickly on the gluten-free diet, but I ended up with more autoimmune problems after starting the diet; I found out those issues were actually related to other AI issues so I didn't waiver in my resolve to stay gluten-free either.

It really is a personal choice unless you need to do the biopsy to get an "official diagnosis" for health concessions at work or school. Best of luck to you in whatever you decide to do. :)
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#7 pain*in*my*gut

 
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Posted 19 January 2013 - 08:41 PM

The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.


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"The best way out is always through" ~Robert Frost

#8 clafran

 
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Posted 20 January 2013 - 03:55 PM

The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.


Thank you, thank you, to everyone. I am grateful for everyone's input.
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#9 tom

 
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Posted 21 January 2013 - 12:31 AM

Haven't seen anyone mention that it can be good, just in general, to let a specialist take a look under the hood, so to speak, since we already know things haven't been well.
I feel better knowing I've got a baseline eval available for future comparison.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#10 Takala

 
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Posted 21 January 2013 - 04:10 AM

It is a lot easier to be on a gluten free diet all the time, as more people discover that they need to be. B) Humans have existed for tens of thousands of years (or hundreds of thousands... not going to get into the anthropology wars ;) ) in their current form, without ingesting wheat, which is an extremely new foodstuff on the human timeline. By switching over to a more traditional human menu now, "omnivore" or eating what you need, not what the wheatwashed keep pushing as "healthy," you can probably avoid damaging yourself. So worth it. :)
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#11 Cara in Boston

 
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Posted 21 January 2013 - 08:45 AM

Your blood tests very clearly indicate that you have celiac. Being a first degree relative makes it even more certain. Our doctor talked us into getting the endoscopy because it would give them a "baseline" to measure future healing. However, be aware that a negative biopsy does NOT mean you don't have celiac - it just means damage was not found (could be too early, could be missed by the doctor taking samples, could be interpreted incorrectly by lab technician, etc.) Do not take a negative endoscopy as a signal to continue eating gluten. Your blood tests are enough to know you should be gluten free. Some doctors "require" a positive biopsy to give you a diagnosis. My son's biopsy was positive, mine was negative. My blood tests were positive, my symptoms were classic (and all resolved on the gluten free diet) but my diagnosis is "gluten intolerance." It is so obvious that I also have celiac - but no matter, treatment is the same. Gluten free for life.
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#12 Seeking2012

 
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Posted 21 January 2013 - 02:21 PM

I agree with what everyone else here has said; you definitely have Celiac and you at this point do have intestinal damage (the EMA result). You don't need an endoscopy to confirm these results.
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- Diagnosed Celiac in May 2014. Gluten-free diet immediately

- Tested VERY high for thyroid antibodies May 2014 but T4, T3 and TSH are in "normal" ranges

- Have experienced chronic fatigue and decreased cognitive and memory function for years

- Sister has been diagnosed with Celiac, autism, schizophrenia and depression

- Mom, dad and other sister are "weak positives" for Celiac
- Mom has been diagnosed with type 2 diabetes


#13 Seeking2012

 
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Posted 21 January 2013 - 02:24 PM

interesting - i had labs done by Prometheus

They showed my TTG IgA of 1.3u/ml, which is in the less than 10,3u/ml reference range.

however, the exact same blood sample was also tested by PeaceHealth Labs by accident (long story) and the TTG IgA came in at 29. their reference range was <20 none, 20-30 weak positive and >30eu was positive.


How in the world does this level of a mistake happen? How can one lab get such a radically different reading from the same blood sample than another lab? My goodness!
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- Diagnosed Celiac in May 2014. Gluten-free diet immediately

- Tested VERY high for thyroid antibodies May 2014 but T4, T3 and TSH are in "normal" ranges

- Have experienced chronic fatigue and decreased cognitive and memory function for years

- Sister has been diagnosed with Celiac, autism, schizophrenia and depression

- Mom, dad and other sister are "weak positives" for Celiac
- Mom has been diagnosed with type 2 diabetes


#14 Lisa

 
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Posted 21 January 2013 - 07:12 PM

Do look into an endo exam, as was mentioned earlier. With a family history and personal history of digestive disorders/discomfort, it's always good , in the least, get an "inside look" to insure that there are no, more serious issues...or as a baseline test. imho ;)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#15 clafran

 
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Posted 26 January 2013 - 12:15 PM

Wow, I am really so very humbled and grateful for all of your responses. I think I'm going to avoid the expense and just go gluten free. I am truly blessed, because my husband insists that once we eliminate the gluten currently in the house (throwing out, donating, etc.), we will go gluten-free. Very curious to see how my kids react: 6 year old boy (with a handful of attention "issues") and 2.5 year old girl.

It hasn't been very difficult. We enjoy natural and whole foods, and we do most of our own cooking anyways. I survived my first post-diagnosis grocery shopping trip, but was a little panicked by the end. We don't eat out very often, but that still concerns me.

On the plus side, I think my mom is happy to have a partner in health. She's not happy I have celiac, but she's relieved that I know and that I can reverse/prevent damage. And now she won't feel quite so left out at family functions -- we'll bring out own stuff, or make things that everyone can eat. My dad, on the other hand, is resistant to the house being totally gluten-free, so we all worry about cross-contamination. She's working on him...

Thanks again, and know that your words have helped me segue into a healthier lifestyle with a minimum of stress!
Cathy
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