Zoso123
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Also I should add that in the 12 weeks, my vitamin d plummeted and now am deficient. Would you guys accept a celiac diagnosis (I am pretty confident that I have it- I was sad before the challenge that I couldn’t eat gluten anymore. Now after the challenge i am EXCITED to never eat it again as I feel like such crap now) or can a positive diamodated Gliadin IgG indicate anything else? Or is it specific to celiac? I am happy to get a diagnosis, but want to make sure it’s the right one. I wish I trusted my doc more (example- 3 days ago they called and said congrats, no celiac, u can eat gluten!! The doc signed off on it. But I looked at my results and pointed out that the deamidated IgG levels were not reported yet. The doc said whoops my bad. The next day they came back positive and I got another call & they said, nevermind, no gluten, you’re positive! They are idiots).
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Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!
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Ok so after 6 weeks, here is my blood results:
deamidated IgA- 3 (0-19 normal)
deamidated IgG- 21 (0-19 normal)
tTg IgA- <2 (0-3 normal)
tTg IgG- <2 (0-5 normal)
endomysial IgA- 111 (87-352 neg)
I am going in for a biopsy this month. The doc said it was telling that my IgG levels rose to abnormal during the 6 week challenge. However, he said Celiacs much more commonly have IgA levels elevated and not IgG so he was still on the fence about saying celiac due to ge fact it was not the IGA. Anyone have a positive celiac diagnosis with elevated IgG?
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On 12/4/2017 at 10:19 AM, ironictruth said:
They told you that you were 100% celiac free?!!!
It is hard to make out what test you had done but I am GUESSING It was a dual TTG/DGP screen. I had a dual DGP test, but my assays always separated the TTG from the DGP.
The problem with the dual screen is that you have no idea what is positive. TTG can be positive in other diseases and so can DGP. Recent studies suggest that DGP is not as reliable as once thought. In fact, there are studies of young children having positive DGP screens which go on to become negative DESPITE continuing on a gluten containing diet.
Your assays does not distinguish so we have no idea what is causing that positive.
My doctor, who is a leading celiac researcher, is not a huge fan of these combined screens.
That being said, they are not without total value obviously. And it is interesting that your numbers went down on a gluten free diet. Was the SAME screen done for your second test? Do you have copies of that?
Enjoy those donuts for awhile longer (please have a chocolate covered white cream filled for me), ask to go to a lab that separates the assays so you are having: Total IGA, DGP (both IGA and IGG), TTG, and EMA. Consult with a dermatologist to see if they can biopsy the rash if it occurs as it could be DH. This would be a diagnosis of celiac and you could avoid the endoscopy. If your insurance covers it, do the genetic test. But do nto go crazy spending out-of-pocket fudns on that if not covered.
The scope is not crazy invasive. Christ, I think I was scoped like 4 times in under 2 years. The meds make me queasy but we resolved that the last time.
Oh, and do any of your life insurance policy planning BEFORE you get the official celiac diagnosis on your record.
Keep us posted!
I have life insurance through my work but should have thought @ a stand alone policy! I’ll keep everyone posted. If my blood test comes back positive, would most people push for the biopsy anyway to know 100%? I know this sounds weird, but I already feel 100% certain there is damage in my intestines based on how I feel & digestive symptoms. You mention the dual test and reminds me of why I wanted blood work repeated- I was concerned that I really had another autoimmune issue misdiagnosed as celiac. (My gut though is telling my it’s celiac). My second blood results after gluten free were:::
deamidated Gliadin abs, IgA- 5 (0-19 is negative)
deamidated Gliadin abs, IgG 15 (0-19 is negative)
t-transglutaminase (tTg) IgA <2 (0-3 is negative)
t-Transglutaminase (tTG) IgG <2 (0-5 is negative)
Endomysial Antibody IgA, Immunoglobulin A, Qn, Serum 154 (negative 87-352)
I am guessing this is the test they will repeat when I go in on Friday. Is this the most comprehensive test? Just want to make sure I am thorough as it seems people on this board know more than the doctors sometimes! Thanks all!
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7 hours ago, cyclinglady said:
Again, the proper way to diagnose celiac disease is through blood test screening and then obtaining intestinal biopsies. Sometimes it is impossible to get the biopsies (via endoscopy) due to various reasons like lack of insurance/financial or long wait times (up to a year in Canada). So, the doctor will have the patient trial the gluten-free diet. For others, skipping the biopsies occurs when the blood test results are super high (over 100) and they had several positives on the complete celiac panel (DGP, TTG and EMA). This happens to kids or to people who are too sick to attempt an endoscopy.
Some people refuse the endoscopy. I get that. What I do not get is why your GI said it was invasive (true) but did not explain why he does not follow the American GI Association’s recommendations. Maybe I am missing something.
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You did get a good test. The problem is not all celiacs test positive to all of them. Some test negative to most of them and some are seronegative (about 10%). Again, maybe your rash is DH and your GI is confident that it is even without a skin biopsy.
At this point, my next appointment is December 13 with me coming in to do blood work any point before then (that way the results are available by the 13th). Sounds like I should keep eating gluten in the meantime (for years my main symts have/are intestinal pain, bloating, has, general “unwell” feeling- until right before my diagnosis I was so bad I was having “accidents” and being 33 & mother of 3 I knew that something was wrong). Should I push to have the biopsy? I am a little scared of the procedure (do you need to be put under??) but want a conclusive diagnosis. Thanks everyone who answered so far!!
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22 minutes ago, cyclinglady said:
The test should be accurate and it sounds like you have DH. That might be the reason to skip the endoscopy. Read through the DH section for valuable tips and welcome to the club!
Thank you! I am just wondering why the GI Specialist didn’t act like the first blood test was a firm diagnosis? Maybe something got lost in translation between him & office? I have read that some tests are more effective than others, so I figured the test I got maybe wasn’t the “good one.” I may as well follow up with another blood test since I’ve gone this long eating gluten, but if it comes back negative, make sure the specialist goes over that first test more thoroughly. I feel stupid for doing this test over (my husband hates that I’m eating gluten again) but wanted it in my file in case any complications arose down the road.
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10 minutes ago, Awol cast iron stomach said:
I would believe the first test
positive is positive
Are you doing the challenge for gi endoscope ?
is the Dr unwilling to diagnose based on the blood test alone?
if you have a DH flare
(look up a thread on the forum here -I personally would see if they will diagnose based on blood test and potential DH biopsy and scope to see damage but I would not finish the challenge if I didn't have to.
in fact you got farther than I did on the challenge my symptoms are multiple and I could not finish I will not bore you with details but 4 decades undiagnosed does lots of damage.
Are you doing this based on the diagnosis parameters?
will they move scope up?
we all know how tough it is
I have been at the mercy of the challenge and pushed to the brink no one should have to endure to be gold standard diagnosed
good luck
Sorry for the wonky format- looks like I had a 39 on the dual antigen screen. I can’t get the test to pull in a better format. The GI doc said that he would repeat blood tests but that he admitted that since I had been gluten-free that it may skew my results (seriously shocked that my levels were back to normal in just 8 weeks!) and complicate diagnosis. He said the scope was invasive and wouldn’t really recommend. He said based on the blood test, the fact that I had rashes, and the fact that I felt better on gluten-free, he was comfortable saying I had celiac. Fast forward to a week later when I got the results, his office called me with “congratulations, happy to report that you are 100% celiac free!!” So, I was very confused. They said that because of that negative test, I didn’t need to go back ever. I don’t think that sounds right and want to get accurate testing. Wonder if my original test will suffice for diagnosis? Anyone know the accuracy of the dual antigen screen?
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I have no idea!! My gastroenterologt’s practice has horrible reviews (but the only practice in my toe ) & truth be told, he didn’t offer me any valuable information. He didn’t even comment on my original results. I will post my original results here & see if anyone has feedback.
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Ok- so back in September I went to my primary care doctor with symptoms of bloating, horrible diarrhea, nausea, etc. I took a blood test, and it came back positive for Celiac Disease. I was gluten free for about 8 weeks when I finally made it in to the Specialist. When I got there, I took another blood test and it came back negative for celiac. I want an accurate diagnosis for my file so have decided to take the gluten challenge. I started getting symptoms back about 2 weeks in, like headaches, bloating but the really bad symptoms just started (I’m 5 weeks in- horrible stomach pains and diarrhea, face sores, rashes on arms). I have been eating TONS of gluten. Think a bagel and multiple slices of pizza a day. I planned on taking the blood test 6 weeks in but am scared this will not be enough time. If the second test is negative, should I just go with the results of the first test? I would hate the Specialist to give me an all clear if I really do have this condition. I also would hate for these 6 weeks of suffering to be for nothing. Any help or guidance would be greatly appreciated.
Help for Gluten Challenge/ Advice on Results
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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Thank you so much! So is the positive IgG pretty indicative of celiac (could it be anything else)? I havent read any of those posts on diet, so I’ll have to start. Honestly, I’m happy to start gluten free. At the start of this, I was so bummed out that I’d have to give up foods. But confirming that it is gluten making me sick, I don’t want to eat it anymore. Kind of nice I got a “farewell to gluten” tour but so happy it’s over. Unfortunately, there is only one office here in Asheville, NC and it’s renowned for being awful (just look at the reviews!!) I’m on Nashville a lot for work, so maybe I can look for a good doctor there instead.