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Yay, Test Results (Sort Of) Looks Like Its Not Celiac Disease! Now I Need Help From All You Wonderful People, Again!

MsCurious

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MsCurious Enthusiast
MsCurious
Posted

So, its looking like its NOT celiac disease! YAY! But knowing that doesn't make the symptoms go away. So, I'm thinking it still could be NCGS. Do any of you have experience with this? What is the likely next step? I'm guessing, elimination diet? Any help or insight you can give me as to how the next chain of events should unfold, would be most appreciated.

They called me today (medical assistant) and told me, "your doctor says the test doesn't indicate celiac." That was it! I said, could you give me the test results? And she sort of stammered and said, um that is the results. I told her there are two DQ markers each followed by a number from 1-9 and I would like to know what they are, because research is rapidly changing and they are finding certain DQ markers or combination of markers that seem to be associated with higher incidents of NCGS. She was clueless. So I emailed my doctor directly and asked him for the results, and asked what the next step is. I should hear back from him in the next 2 days or so.

Any thoughts? Thank you so much.. in advance. ;) And thank you so much for all the help and support through this initial pre-diagnosis time. :)

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rosetapper23 Explorer
rosetapper23
Posted

So....you've only had the genetic testing? Sorry to break it to you, but there are people with celiac who don't have the so-called celiac genes. It's suspected that there are a number of yet-unidentified genes that also cause celiac, and you may have one of them. Have you also had any bloodwork done? Or an endoscopy? Perhaps you've already shared that with everyone in a prior posting and are just now sharing your genetic results. If that's the case, then perhaps my response won't seem very helpful to you.

If you indeed do not have celiac, you could try a gluten-free diet to see if you feel better. That's definitely a good place to start. I'm sure others will have some great advice for you....

mushroom Proficient
mushroom
Posted

Yes, the next step is elimination, of gluten, (and milk products) and see what happens :)

Kelly777 Newbie
Kelly777
Posted

Did they biopsy your small bowel? Plus I heard there are a lot of false negatives and you could be gluten intolerant; not celiac. Please get more information before you take that as the final word. The damage that gluten does for folks with disease is horrible. Make sure you are not one of the statistics.

MsCurious Enthusiast
MsCurious
Posted
  • Author

Sorry, I got so excited to know it wasn't the kind of sensitivity that turns your "shag carpet villi into tile" that I forgot the post was pretty much informationless. :) Yeah, I posted test results in a different post but here they are:

TISSUE TRANSGLUTAMINASE IGG 0.40 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.42 <0.90- Index

(negative)

research doctor saw my results and said its probably unlikely that its celiac disease. And that genetic tests really don't tell much, even to the experts. LOL I don't know what's what anymore!

No other tests for celiac disease except genetic DQ markers and yes, I am lactose intolerant and have been for 30 years.

and like I said before, they just simply said, the DQ test didn't indicate that I was Celiac. So that's why I think it could be NCGS. This gets all so confusing and I just really feel like I want to go gluten-free and forget all the testing. Doubt they'd do any more anyway, based on these tests. So, I'm just counting myself lucky that its not celiac disease, and hoping that going gluten-free will resolve the symptoms and all will be well. Just wasn't sure if there was anything else I was missing in the chain of events. :) Thanks Mushroom and Rose and everybody for caring enough to respond to my posts! :)

MsCurious Enthusiast
MsCurious
Posted
  • Author

Did they biopsy your small bowel? Plus I heard there are a lot of false negatives and you could be gluten intolerant; not celiac. Please get more information before you take that as the final word. The damage that gluten does for folks with disease is horrible. Make sure you are not one of the statistics.

No Biopsy...Still waiting for DQ numbers, but from what I can "guess" based on what the medical assistant said, it wasn't DQ2 or DQ8.

cassP Contributor
cassP
Posted

No Biopsy...Still waiting for DQ numbers, but from what I can "guess" based on what the medical assistant said, it wasn't DQ2 or DQ8.

ok...waittttttttttt a second... you've totally lost me- what is: NCGS ???? did i miss part of the convo? am i having brain fog??? i really am clueless.. help

also- you do not need a DQ2 or a DQ8 necessarily to have Celiac of Debhilitating Gluten Intolerance. also- you could have a DQ2 or a DQ8 and not have any issues.

also- the TTG is only 1 antibody out of at least 3 that can be tested...

not trying to burst your bubble- but like you said- youve come to us to hear what the docs havent told you..

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHH OOOKKKK... nevermind- i just got it: Non Celiac Gluten Intolerance........

OMG...... i get stumped on the initials on here all the freaking time :huh::lol:

um, or SENSITIVITY??

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ravenwoodglass Mentor
ravenwoodglass
Posted

So, I'm just counting myself lucky that its not celiac disease, and hoping that going gluten-free will resolve the symptoms and all will be well.

First off they didn't do all the celiac blood tests you should have had done. Also the tests have a 20 to 30% false negative rate. My doctors not acknowledging this cost me many many years of my life. I had to get close to death before I finally got diagnosed. I am a firmly diagnosed celiac and gene testing 5 years after diagnosis showed I don't have either of those two genes, I have a double DQ9 instead.

In the end though it really doesn't matter if you are considered celiac or NCGS, both are autoimmune and both require you to be just as strict with the diet.

Your plan to do a good strict trial of the diet is a good one after you have had all the tests done.

Marlie Apprentice
Marlie
Posted

I wouldn't 100% discount it yet. My teens results negative Gene Testing, tTG IgA, EMA IgA, antiGlidian IgA and IgG but positive on the DGP IgA and IgG. You really need all the tests.

shopgirl Contributor
shopgirl
Posted

Congratulations? :) Personally, I was thrilled when my tests came back positive because that was an answer after a long time of no answers. The diet can be a PITA but my search is over.

I agree with the others who suggest to continue testing and then at least give the diet a try.

MsCurious Enthusiast
MsCurious
Posted
  • Author

I wouldn't 100% discount it yet. My teens results negative Gene Testing, tTG IgA, EMA IgA, antiGlidian IgA and IgG but positive on the DGP IgA and IgG. You really need all the tests.

Oh, wow... really? Thank you so much for telling me that. There's so much I don't know...and obviously so much THEY don't know.

I wonder how I go about getting the right tests.

MsCurious Enthusiast
MsCurious
Posted
  • Author

First off they didn't do all the celiac blood tests you should have had done. Also the tests have a 20 to 30% false negative rate. My doctors not acknowledging this cost me many many years of my life. I had to get close to death before I finally got diagnosed. I am a firmly diagnosed celiac and gene testing 5 years after diagnosis showed I don't have either of those two genes, I have a double DQ9 instead.

In the end though it really doesn't matter if you are considered celiac or NCGS, both are autoimmune and both require you to be just as strict with the diet.

Your plan to do a good strict trial of the diet is a good one after you have had all the tests done.

Raven, do you know which tests are the ones they "should" do? I'm thinking I need tests that are not necessarily celiac tests, but gluten intolerant... because that's what I think I am. I don't have the dermatitis stuff, nor do I have vomiting, mostly the GI stuff and fatigue, headaches, low vitamin D, low cholesterol (which is great..but can be caused by this stuff I guess) joint aches, etc. I "thought" I had figured out my problem once I identified my lactose intolerance, but realized recently that I "can't" be messing up this much! I'm sick every day! After looking up IBS I kept coming across gluten issues and started reading and realized.... omgosh that's it! I thought back to the times when I felt better, and it was always when I'd made a pot of homemade soup that contained zero gluten, or when I'd make a rice dish, or just have meat, potato, and vegetable ... no gluten. So I started doing little mini tests with my diet, intentionally and it sure hit home! I have another question for you guys... when you were eating gluten, did you notice getting sicker if you ate more gluten (as opposed to just a tiny bit) or didn't it matter related to the severity of your symptoms and discomfort? Thanks so much for taking the time to answer my never-ending questions.

AerinA Rookie
AerinA
Posted

It's always good to have answers, and by all means chase them--in the end though, if you try the diet and you feel better, that is the indicator you should ultimately respect. Your body knows better than any doctor what it does and does not want to process. They may never actually figure out all the ways our bodies can react negatively to things, but sometimes you just know when something doesn't agree with you--even if nobody can prove it. I was five minutes off on my sleep study, so my insurance company wouldn't pay for narcolepsy medication. In that case, the diagnosis is really essential (except that the gluten free diet, only a month in, has more or less fixed the problem a hundred times better than the drugs I paid $150 for). In the case of celiac, there isn't any particular advantage to having a diagnosis except to see it on paper. And as you know, non-celiac doesn't mean not gluten intolerant (and the studies of gluten intolerance seem to be in their infancy). Genetic research is advancing every day. If answers are important to you and you don't get them now, don't give up. They're finding out more and more every day.

MsCurious Enthusiast
MsCurious
Posted
  • Author

Thanks for the thoughts.... very valid and wise. Just hope "self diagnosing" wouldn't overlook cancer or something that I have no medical knowledge to diagnose. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Just hope "self diagnosing" wouldn't overlook cancer or something that I have no medical knowledge to diagnose. :)

That would be IMHO very unlikely, for one thing if all your issues do not clear up with the diet then being gluten free is not going to effect testing for other problems. I don't know if it is the case for you but many times by the time folks get to the point where they are questioning celiac they have had many tests that have already ruled out stuff like cancer.

ravenwoodglass Mentor
ravenwoodglass
Posted

I don't have the dermatitis stuff, nor do I have vomiting, mostly the GI stuff and fatigue, headaches, low vitamin D, low cholesterol (which is great..but can be caused by this stuff I guess) joint aches, etc.

Not all celiacs have skin issues and not many vomit. The symptoms you are listing are typical celiac symptoms.

One of the other posters, Marlie gave you the tests that you should ask for. They are

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deaminated Gliadin Protein (I think that's what the DGP stands for) IgA and IgG.

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

MsCurious Enthusiast
MsCurious
Posted
  • Author

Not all celiacs have skin issues and not many vomit. The symptoms you are listing are typical celiac symptoms.

One of the other posters, Marlie gave you the tests that you should ask for. They are

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deaminated Gliadin Protein (I think that's what the DGP stands for) IgA and IgG.

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

Thank you! I'm sure they were posted somewhere, but honestly, my head is sort of spinning with all this new information, so it probably just didn't sink in at the time. I've copied it to my desktop and will take it with me to the doctor. Thanks again to both you and Marlie! :)

Marlie Apprentice
Marlie
Posted

Oh, wow... really? Thank you so much for telling me that. There's so much I don't know...and obviously so much THEY don't know. This is not good... I wonder how I go about getting the right tests. As I've stated before, I found a professional Lecture video done by the Celiac expert at Mayo Clinic in Rochester and forwarded it to my doctor, because he ordered the two tests that I had done, that I found out Mayo Clinic considers obsolete and they don't even do them anymore. SO I'm not dealing with a doctor that is up on current research. He's very nice, but nice doesn't get me test for the right things, knowledge does. Is that last test that he tested positive for...the "new" test I've heard about?

The sad truth is too many doctors don't understand this disease. I think yesterday I had a doctor tel me you are born with it and it's an allergy.

MsCurious Enthusiast
MsCurious
Posted
  • Author

The sad truth is too many doctors don't understand this disease. I think yesterday I had a doctor tel me you are born with it and it's an allergy.

OMG... I'm pretty new to this and in the week worth of research I've done, even I know that's a false statement... on TWO counts! :( Thanks for all your help, and information, Marlie. It is sooooo much appreciated!

Just 2 minutes after I posted this, I got a call from my doctor's office. I assumed it was the GI department calling to schedule an appointment, since my doctor told me this morning that they would be calling. Nope it was RN... she wanted to know if I had gotten my HLA-DQx results, and I told her "no, doctor said they would be mailing them out to me today"... She said, well there are no results here...was it an outside lab? And I said yes, it was Quest Labs. She said, I don't know what this DQ test is anyway. It's odd that an RN wouldn't know anything about the tests. Seems like they should have crossed her path once or twice before? I'm getting scare of the incompetence... or lack of current training I'm dealing with here. :( Especially since, I am depending on them to know what they are doing.

shopgirl Contributor
shopgirl
Posted

But its odd that an RN wouldn't know anything about the tests. Seems like they should have crossed her path once or twice before? I'm getting scare of the incompetence... or lack of current training I'm dealing with here. :(

Not really. When the others say it's not a well understood disease, they aren't kidding.

After diagnosis it's standard to get a bone density scan to test for osteopenia or osteoporosis. When I went for mine, both nurses who performed it

MsCurious Enthusiast
MsCurious
Posted
  • Author

Not really. When the others say it's not a well understood disease, they aren't kidding.

After diagnosis it's standard to get a bone density scan to test for osteopenia or osteoporosis. When I went for mine, both nurses who performed it

mushroom Proficient
mushroom
Posted

By the way, DGP stands for Deamidated Gliadin Peptide. :)

MsCurious Enthusiast
MsCurious
Posted
  • Author

By the way, DGP stands for Deamidated Gliadin Peptide. :)

Thanks Mushroom... I fixed my note that I'm taking to the doctor. :)

cassP Contributor
cassP
Posted

Oh, wow... really? Thank you so much for telling me that. There's so much I don't know...and obviously so much THEY don't know. This is not good... I wonder how I go about getting the right tests. As I've stated before, I found a professional Lecture video done by the Celiac expert at Mayo Clinic in Rochester and forwarded it to my doctor, because he ordered the two tests that I had done, that I found out Mayo Clinic considers obsolete and they don't even do them anymore. SO I'm not dealing with a doctor that is up on current research. He's very nice, but nice doesn't get me test for the right things, knowledge does. Is that last test that he tested positive for...the "new" test I've heard about?

but the TTG is not obsolete... its just one tiny piece. this disease is still so not understood by the medical community yet- so you really need AS MANY parts to the panel as possible.. we have to be skeptical & open minded at the same time. of course we respect MAYO.. and we also respect Dr. Peter Greene at the Celiac research center at Columbia University- but he wrote in his book that UNLESS u had a DQ2 or a DQ8- it was impossible to have Celiac- well, that's not true either.

sorry, didnt mean to sound like a rant

ravenwoodglass Mentor
ravenwoodglass
Posted

By the way, DGP stands for Deamidated Gliadin Peptide. :)

Thanks, I am going to have to write that down. I don't know why I just can't remember the name of that test.

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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