Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Blood Test Received -- Endoscopy Or Not?
0

15 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 :)

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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. :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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. :)

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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 ;)

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined