Questions Re Blood Tests

[blmoreschi]

Hello all- I'm new here. My 11 year old just got positive blood test results and is scheduled for an endoscopy/biopsy on Wednesday. I know that's a quick turnaround, but I think there are some doctors feeling awfully guilty that they didn't figure this out sooner. She has no GI symptoms, but after her 6th arm fracture last year we started looking into what was going on. She had a DEXA scan in September that showed Osteoporosis, and at that point I asked the endocrinologist about Celiac and she blew me off. We have gone so far as to have a diagnosis of Osteogenesis Imperfecta (brittle bone disease) for 8 weeks, only to have the DNA test turn up normal/negative. It took a visit to an OI specialist to say "why hasn't she been tested for Celiac?" and here we are 10 days later almost diagnosed. It's a relief, and overwhelming.

 

I don't fully understand the blood testing, but from what I can tell, this is a strong positive. My husband keeps saying "let's wait for the biopsy results" because we were burned with the false OI diagnosis. I know I only have about a week to wait for results, but I'm undestandably (I think!) anxious to confirm a diagnosis and get on with eliminating gluten as soon as the biopsy is performed.

 

Thoughts about these tests? I don't know what the first one is - which is normal. The others I think are clearly positive. How does the first one relate to the others?

 

                                            Reference Range

 

IgA                         107         64-246 mg/dL

Gliadn DEAM IgG   61          <20units

Gliadn DEAM IgA   84          <20units

Transglut IgA         99          <4U/mL

 

Thanks for any insight you can give me!

[psawyer]

The first test is a control. Some people are deficient in IgA overall. In such cases, a "negative" on any specific IgA test is not meaningful. Your IgA level is normal.

 

The next three are tests for celiac disease, and you say, are all strongly in the positive range. The deamidated tests (the middle two) are highly specific to celiac disease and very rarely have a false positive.

[nvsmom]

Welcome to the board.

 

Ditto what Peter wrote. That's about as positive as a celiac test (or inthis case - tests) can get. You should probably start getting the gluten filled foods out of the house. Check her vitamins, medications, shampoos and lotions (that could get in her mouth) and all condiments, spices, sauces and baking ingredients (like sugar that has been contaminated with wheat flour). Are you making the whole house gluten-free?

 

You should probably have the entire family tested for celiac disease. It is a genetically linked so there is a chance someone else in the family could have it.

 

I wish her the best with her endoscopy.

[blmoreschi]

Thanks very much for those replies. It is so nice to have the members of this forum as a resource, because there is so much to read on the internet but I am suspicious about the accuracy of about 1/2 of it!  Most of it I can sift through and make sense of, but the blood test information was confusing me - and Peter your explanation made it all perfectly clear.

 

One other question: Any suggestions on what to say to know-it-alls (including my sister, the nurse) who say "why are you putting her through the biopsy when the results are so strongly positive?" EVERYTHING we have read says that the biopsy is important, and I would hate to commit her to a lifelong diagnosis without 100% certainty. However, if we hadn't been able to get the biopsy scheduled so quickly I guess I might feel differently. I guess I haven't read too much that gives me a reason why the biopsy is so important so I'm wondering if you can shed some light on that so I can defend our decision with some more knowledge (not that I really need to defend it, but still....).

 

Thanks for the good wishes on the endoscopy, nvsmom. She has been a trooper through all the testing over the last 10 months, but she is really freaked by this one. These are the first tears we've gotten. I know she'll do fine, and will probably be better after we meet the GI doctor the day before and he tells her about it. And, yes, we know we need to get the rest of us tested (absolutely no symptoms) but we're going to get her settled in first, I think! We are letting her have one last gluten-fest this weekend, but I'm cleaning out the pantry and reading every label in the house and the day after the endoscopy she is going gluten-free as much as possible, food-wise. Then I know I need to take care of shampoos, lotions, etc. My husband thinks we don't need to do it until after the biopsy results are in, but I'm overruling him on this!

[mushroom]

Just a word on the biopsy.  This has always been what is considered to be the 'gold standard' of diagnosis, confirming the blood test results.  No doctor would give a diagnosis without this confirmation.  Today, there is a little less emphasis placed on it.  Even Dr. Alessio Fasano, the foremost expert on celiac, will now formally diagnose without it providing the other four conditions are met:  symptoms, which resolve on gluten free diet, positive blood test and positive genetic testing.  Also, the new DGP test -- deamidated gliadin -- is much more sensitive and much more specific to celiac disease, which has removed a lot of the uncertainty around the older tTG.

 

If you don't have to wait long I would recommend doing the testing to assess the level of damage (a benchmark against which healing can be judged) and possibly detect any other problems (which probably don't exist).  If you had to wait a long time and continue doing damage to get the badge of approval I might give it a second thought or two

[powerofpositivethinking]

blmoreschi-I am so glad you are on your way to answers!!  I've seen it suggested on the forum, but I would have popsicles for your daughter afterwards.  I felt fine after my EGD, but I had a sore throat, so popsicles might be a good way to speed up the healing process  best of luck!

 

 

 

mushroom-any chance that information from Dr. Fasano is written down anywhere?  I only had a positive DGP igG score, symptoms, which are getting much better a month into the gluten free diet, but my GI doctor didn't think the genetic testing was necessary.  I am still interested in getting it done, but I need more info to sway him.  Plus I found an article that links the DQ2 and DQ8 with an increase in nickel allergy, which I developed a few years ago.  I had a negative biopsy, so I was diagnosed with gluten intolerance.  thanks! 

Just a word on the biopsy.  This has always been what is considered to be the 'gold standard' of diagnosis, confirming the blood test results.  No doctor would give a diagnosis without this confirmation.  Today, there is a little less emphasis placed on it.  Even Dr. Alessio Fasano, the foremost expert on celiac, will now formally diagnose without it providing the other four conditions are met:  symptoms, which resolve on gluten free diet, positive blood test and positive genetic testing.  Also, the new DGP test -- deamidated gliadin -- is much more sensitive and much more specific to celiac disease, which has removed a lot of the uncertainty around the older tTG.

 

If you don't have to wait long I would recommend doing the testing to assess the level of damage (a benchmark against which healing can be judged) and possibly detect any other problems (which probably don't exist).  If you had to wait a long time and continue doing damage to get the badge of approval I might give it a second thought or two

[nvsmom]

I never had the biopsy myself, but I did not feel the need for it and my doctor did not push it... But it's a personal choice.  I'm sure you'll feel much better once they rule out all of the other possible problems and give you an idea of her villi damage.

 

Speaking of damage, sometimes celiac damage to the villi is spotty rather than uniform. That means that unless the doctors test the correct spots, they could miss the damage - the surface area of the small intestine is roughly that of a tennis court. I've heard many around here, who have had the biopsy, suggest you request 6-8 samples be taken so there is a better chance of catching the damage.

 

I just mentioned this in case her biopsy comes back negative (because they missed the damaged spots)....  I would still consider her to be a celiac with those blood tests and go gluten-free regardless.

 

I've heard popsicles are a nice treat after the endoscopy - to sooth a sore throat. Best wishes.

[mushroom]

blmoreschi-I am so glad you are on your way to answers!!  I've seen it suggested on the forum, but I would have popsicles for your daughter afterwards.  I felt fine after my EGD, but I had a sore throat, so popsicles might be a good way to speed up the healing process  best of luck!

 

 

 

mushroom-any chance that information from Dr. Fasano is written down anywhere?  I only had a positive DGP igG score, symptoms, which are getting much better a month into the gluten free diet, but my GI doctor didn't think the genetic testing was necessary.  I am still interested in getting it done, but I need more info to sway him.  Plus I found an article that links the DQ2 and DQ8 with an increase in nickel allergy, which I developed a few years ago.  I had a negative biopsy, so I was diagnosed with gluten intolerance.  thanks! 

Here you go:

 

Open Original Shared Link

[sisterlynr]

I was diagnosed w/o the biopsy as my symptoms responded to eating gluten free.  I think it would be good for the doctors to know the level of damage, as has been mentioned, for her ongoing care.  

 

I've had several EGD procedures, some left a sore throat and others didn't.  May depend on the doctor.  Cool, soft foods is recommended for after care.

 

I too have Osteoarthritis from Celiac but it was just diagnosed this past year. . . . glad they caught this while she is young, it will save her many health problems.  Good luck!

[powerofpositivethinking]

thank you!

Here you go:

 

Open Original Shared Link

[blmoreschi]

Update: We saw the pediatric GI today, and when I handed him the blood test results it was almost comical. We had been talking about symptoms and he had been saying "if it's Celiac" etc. We didn't realize that he hadn't gotten the results from the pediatrician. So when he saw them his reaction was funny - he did a head shake and said "okaaaay". As you all told me, the blood results were VERY positive.

 

Then he told us that he didn't think we needed the biopsy unless we just wanted it done. He said that the new protocol that has come out of Denmark is that with obvious symptoms (she's 11 and has osteoporosis, delayed bone age, etc) and a Transglut IgA of 100 that the biopsy isn't necessary for diagnosis. Since Lily's is 99 he said "close enough!" He assured us that they really wouldn't gain any knowledge from the biopsy for all those reasons of false negative sampling, so we cancelled the endoscopy planned for tomorrow. Needless to say, my daughter was thrilled!

 

Sorry that I didn't get any more specifics about what research studies he was talking about. My daughter asked him if she could go have pasta and bread at Panera one last time and he said sure (pre-planned because that was supposed to be the last thing before the  endoscopy). So she will be as close to 100% gluten-free as my current knowledge (and I've been reading a ton) will take her as of tomorrow morning. We are looking forward to the recovery this journey will hopefully bring!

[powerofpositivethinking]

excellent news!!

Then he told us that he didn't think we needed the biopsy unless we just wanted it done. He said that the new protocol that has come out of Denmark is that with obvious symptoms (she's 11 and has osteoporosis, delayed bone age, etc) and a Transglut IgA of 100 that the biopsy isn't necessary for diagnosis. Since Lily's is 99 he said "close enough!" He assured us that they really wouldn't gain any knowledge from the biopsy for all those reasons of false negative sampling, so we cancelled the endoscopy planned for tomorrow. Needless to say, my daughter was thrilled!

[nvsmom]

i'm glad you know with such certainty. I hope she feels 100% soon.