14 replies to this topic

[clafran]

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

[GottaSki]

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

[clafran]

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

[Madagascar]

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.

[clafran]

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

[nvsmom]

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.

[pain*in*my*gut]

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.

[clafran]

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.

[tom]

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.

[Takala]

It is a lot easier to be on a gluten free diet all the time, as more people discover that they need to be. 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.

[Cara in Boston]

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.

[Seeking2012]

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.

[Seeking2012]

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!

[Lisa]

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

[clafran]

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