Teen Got Test Results W/out Interpretation

[lshaw]

Hello everyone.

 

I read the information under testing but I'm still not sure how to interpret my daughter's recent test results. She's been struggling with anxiety and concentration issues for some time now, so I had a celiac panel run on her. Today I got the following results:

 

Deamidated gliadin IgG:  4.0 (normal = less than 10 u/mL)

Deamidated gliadin IgA:  11.8 (normal = less than 10 u/mL) Flagged as "outside normal limits"

Transglutaminase IgA AB: 1.1 (normal = less than 10 u/mL) 

Transglutaminase IgG AB: 1.6 (normal = less than 10 u/mL)

 

Total IgA: 2.18 (Adult 0.69 - 3.82 g/L)

 

Everything looks "normal" except the deamidated gliadin IgA?

 

Gluten sensitivity seems to run in our family although no one has been formally diagnosed.

 

I'm getting desperate to find some answers to her problems. Any help with how I should interpret these results would be greatly appreciated.

 

LJ

[cyclinglady]

Like me, she was positive on DG IGA and normal/negative on everything else. The next step should be an endoscopy with biopsies, I would think. I ended up with moderate to severe intestinal damage.

How old is she? Kids are often tricky to diagnosis.

[lshaw]

Like me, she was positive on DG IGA and normal/negative on everything else. The next step should be an endoscopy with biopsies, I would think. I ended up with moderate to severe intestinal damage.

How old is she? Kids are often tricky to diagnosis.

 

Thanks very much. She is 16. Very few digestive symptoms, other than dairy sensitivity.

[nvsmom]

The DGP IgA is pretty specific to celiac disease.  According to the World Gastroenterology report on celiac disease, the DGP IgA is 93-96% specific to celiac disease, so chances are that she has celiac disease.  See page 12 for the info: Open Original Shared Link It is not thought that DGP tests will be positive for non-celiac gluten sensitivity (NCGS) - just celiac disease. It's not uncommon for a celiac to be negative in some tests, so don't let the negatives provide too much doubt.  

 

I agree with Cyclinglady that the next step would be the endoscopic biopsy, if you choose to go that route.  She'll need to be eating gluten in the 2-4 weeks prior to the procedure. That procedure isn't perfect either; it can miss up to 20% of celiacs. If you get it done, ensure they take a minimum of 6 samples so the likely hood of a false negative s reduced.

 

The dairy sensitivity may go away after a time on the the gluten-free diet, if she is indeed a celiac like she appears to be.  Many people successfully reintroduce milk after about 6 months on the diet.  Yeah - ice cream!

 

You may want to have her nutrient levels tested too. Some celiacs are low in: A, D, B12, folate, ferritin, Ca, Fe, K, Mg, K, Cu, and zinc. Hypothyroidism is also common so keep an eye out for that too. 

 

And don't forget that celiac disease is genetically linked you, your spouse, and her siblings should be tested, and retested every couple of years if you are continuing to eat gluten.

 

It's a lot to take in at first. Hang in there, and welcome to the board.

[lshaw]

Thanks Nicole. This is something I've suspected for quite a while now, especially since I had to give up gluten myself after getting extremely sick a few years ago (flu-like symptoms followed by unexplained joint pain, erythema nodosum, post-viral fatigue).

 

She is very skeptical, as she doesn't see any serious physical symptoms. However, she is literally the only one in our family of four who will eat gluten (and lots of it). The rest of us have ruled that it's not worth the fall-out. However, I'm convinced her anxiety is rooted in her gut.

 

We don't have a family doctor, so now I have to find someone who is well-versed in this area and who will agree to refer me to a specialist for the endoscopy. I have very little patience for mainstream doctors, so this could be a challenge!

 

LJ

 

 

 

 

 

The DGP IgA is pretty specific to celiac disease.  According to the World Gastroenterology report on celiac disease, the DGP IgA is 93-96% specific to celiac disease, so chances are that she has celiac disease.  See page 12 for the info: Open Original Shared Link It is not thought that DGP tests will be positive for non-celiac gluten sensitivity (NCGS) - just celiac disease. It's not uncommon for a celiac to be negative in some tests, so don't let the negatives provide too much doubt.  

 

I agree with Cyclinglady that the next step would be the endoscopic biopsy, if you choose to go that route.  She'll need to be eating gluten in the 2-4 weeks prior to the procedure. That procedure isn't perfect either; it can miss up to 20% of celiacs. If you get it done, ensure they take a minimum of 6 samples so the likely hood of a false negative s reduced.

 

The dairy sensitivity may go away after a time on the the gluten-free diet, if she is indeed a celiac like she appears to be.  Many people successfully reintroduce milk after about 6 months on the diet.  Yeah - ice cream!

 

You may want to have her nutrient levels tested too. Some celiacs are low in: A, D, B12, folate, ferritin, Ca, Fe, K, Mg, K, Cu, and zinc. Hypothyroidism is also common so keep an eye out for that too. 

 

And don't forget that celiac disease is genetically linked you, your spouse, and her siblings should be tested, and retested every couple of years if you are continuing to eat gluten.

 

It's a lot to take in at first. Hang in there, and welcome to the board.

[nvsmom]

Thanks Nicole. This is something I've suspected for quite a while now, especially since I had to give up gluten myself after getting extremely sick a few years ago (flu-like symptoms followed by unexplained joint pain, erythema nodosum, post-viral fatigue).

 

She is very skeptical, as she doesn't see any serious physical symptoms. However, she is literally the only one in our family of four who will eat gluten (and lots of it). The rest of us have ruled that it's not worth the fall-out. However, I'm convinced her anxiety is rooted in her gut.

 

We don't have a family doctor, so now I have to find someone who is well-versed in this area and who will agree to refer me to a specialist for the endoscopy. I have very little patience for mainstream doctors, so this could be a challenge!

 

LJ

 

Cognitive and anxiety issues are really quite common among celiacs. The problem is that not many people, or doctors, equate forgetfulness, cofusion or panic attacks with a harmless bowl of noodles or an innocent peanut butter and jelly sandwich.

 

Could the doctor who ordered those tests for you refer her to a specialist?  It sounds like she isn't keen on going gluten-free so you'll need a specialist to back the diet up. 

 

This article discusses the DGP being positive and the tTG negative. Open Original Shared Link The DGP IgA is often used to monitor compliance with the gluten-free diet because it is more responsive to gluten consumption.  If she went gluten-free for a few months, at least 3, and retested the DGP IgA it would probably have gone down in that time frame, which would also indicate celiac disease.  The tTG IgA is often much slower to change, and can be negative in early cases of celiac disease. If she continues to eat gluten,it may one day turn positive...or not.

 

This is an interesting thread about the same topic from this forum: https://www.celiac.com/forums/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/Basically it comes down to the positive DGP probably means celiac disease but it can't be said with 100% certainty, but to be honest, not many diseases can.

 

Good luck with it all.  

[lshaw]

Cognitive and anxiety issues are really quite common among celiacs. The problem is that not many people, or doctors, equate forgetfulness, cofusion or panic attacks with a harmless bowl of noodles or an innocent peanut butter and jelly sandwich.

 

Could the doctor who ordered those tests for you refer her to a specialist?  It sounds like she isn't keen on going gluten-free so you'll need a specialist to back the diet up. 

 

This article discusses the DGP being positive and the tTG negative. Open Original Shared Link The DGP IgA is often used to monitor compliance with the gluten-free diet because it is more responsive to gluten consumption.  If she went gluten-free for a few months, at least 3, and retested the DGP IgA it would probably have gone down in that time frame, which would also indicate celiac disease.  The tTG IgA is often much slower to change, and can be negative in early cases of celiac disease. If she continues to eat gluten,it may one day turn positive...or not.

 

This is an interesting thread about the same topic from this forum: https://www.celiac.com/forums/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/Basically it comes down to the positive DGP probably means celiac disease but it can't be said with 100% certainty, but to be honest, not many diseases can.

 

Good luck with it all.  

 

 

Looks like I have some reading to do One last question. Any advice on how to approach the GP  with the results now? Especially since there is only one positive (and it looks like it's not hugely out of normal range). He strikes me as fairly open, but I'm wondering whether he'll be inclined to refer me to a specialist....

[nvsmom]

I would just ask. Perhaps take some evidence to back you up, but most doctors if asked, for a good reason, for a specialist referral will do it for you. I'm up in Canada so getting in to see a specialist is often more difficult than in the States, but most up here seem to do it if you ask for one.

 

That test was positive so at the very least the doctor should view a referral as helping to rule out celiac disease even if he doesn't expect a confirmation.

 

Good luck.  

[lshaw]

I would just ask. Perhaps take some evidence to back you up, but most doctors if asked, for a good reason, for a specialist referral will do it for you. I'm up in Canada so getting in to see a specialist is often more difficult than in the States, but most up here seem to do it if you ask for one.

 

That test was positive so at the very least the doctor should view a referral as helping to rule out celiac disease even if he doesn't expect a confirmation.

 

Good luck.  

 

 

Sounds good....and I am a Canuck as well

[nvsmom]

Excellent!

[MitziG]

Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)

[lshaw]

Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)

 

Thanks for that advice MitziG. I have no problem believing there are a lot of docs out there who aren't well informed. I make it a habit of avoiding the mainstream medical system at all costs. Unfortunately, this looks like one case where I'll need to push for a diagnosis.

[lshaw]

Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)

Thought I'd post a follow-up, since we've now gone back to see the GP, an older gentleman I'd only seen once before, with my daughter's test results. I have to say that it was a rather strange appointment, in that I didn't expect him to be so open-minded and well-read. Neither he nor his partner eats gluten, and he's convinced it's unhealthy in general. He was also extremely open to alternative therapy, nutritional supplements, etc.etc. This was all marvelous in my books, except for the fact that he is so jaded about the medical system in general that he is quite sure we won't get anywhere with any GI specialist in our city. He was speaking from personal experience. His partner tested positive on one of the Celiac panel tests, and more "convincingly" than my daughter, who was just out of the range of normal. They went off to consult with one of the city's top-rated gastroenterologists, who promptly dismissed their concerns. In his words: "I would never go back."  At that point, they both went off gluten completely, and on their own, Because my daughter is only 16, has no digestive systems, and only slightly elevated DMG IgA, he says there's very little chance they'll agree to do a biopsy. He asked her if she would be open to giving it a try, but there's no way she's going to do a strict gluten-free diet without having an official diagnosis! Ack!