Why Do The Endoscopy/biopsy?

[Half Asleep]

Hi, 

 

I was diagnosed with celiac a few weeks ago based on positive blood tests.  My doctor said I could do the endoscopy/biopsy, but that it wasn't necessary because my tests were very positive, it's an invasive procedure, and even if they didn't find damage yet, I needed to get off gluten.  

 

I had my kids tested a couple of weeks ago and my son tested positive.  The pediatrician referred us to a specialist (we're going on Tuesday).  I am afraid they will want to do the biopsy on him and I'd really rather not have it done.  I have read, and read, and read, and I haven't found a good reason to do it other than confirmation of what the blood tests showed.  His results:

 

His numbers                        Ref. range

 

ttg ab, iga  >100                     <4

 

immunoglobulin A -  51           70-432

 

ttg ab igg-  39                         <6

 

iga  Positive                           negative

 

endo. ab titer  1:40                  <1:5

 

 

So, with those results, I'm wondering-what else could it be?  Whether or not they find the damage, he needs to be off gluten.  So I'd really like to spare him the procedure.  Is there another reason for the biopsy to be done?  I don't know if it matters, but he had absolutely no stomach issues, sleep issues, behavior issues, or anything we could think of, other than his growth has slowed down over the years (he's 13).  The only reason he was tested was because I tested positive. 

 

Thanks for any advice or opinions-

[nvsmom]

Welcome to the board.

Wow. Itis really unusual for kids to have a positive EMA test, and which such a high titre too.

He had the same positive tests as me, and that was enough for my doctor to diagnose me too. With the family history of celiac disease, I would say it is a sure thing that it is celiac disease. My doctor did not require a biopsy either because it was such a sure thing.

I think, in your son's case, the only reason to do the biopsy would be to check for other problems, or to jump through hoops so he can get a firm diagnosis so if he needs accommodations in school of college, it can be done. Hopefully your son's doctor will diagnose without the biopsy. Perhaps the paediatrician or your doctor will diagnose before going to the specialist.

Like you, I feel that the endoscopic biopsy is not always needed. I hope your doctor will be willing to listen.

[Mdhriggin]

Both of my children had similar blood test results. My daughter did have the endoscopy to confirm because he was the first in the family to show signs. But my son did not because by then we knew his sister and father were celiac. The pediatrician was okay diagnosin him without given the family history. We have not had problems with schools or anything the only thing I worry about is when he gets old enough and has to register for the draft, as celiac means he can't serve - so he may have to do it then. But I am hopin there are less invasive confirmation tests developed in the next 16 years! College won't be an issue, as long as the doctor prescribes a gluten free diet the housing and dining will have to accommodate (my husband managed campus food service for almost 7 years). If your son does have to undergo the endoscopy, it is not that bad - my daughter handled it well and didn't remember anything because of the anesthetic.

[Mom-of-Two]

Same here- my kids were tested after I got my diagnosis, my 8 yo tested + with no stomach symptoms whatsoever, normal size and growth, she did have joint pain that came and went (her only "symptom").

She got a + tTG (it was 78) and pediatric GI suggested biopsy- we did so, but she actually had a totally normal scope and biopsy samples- that GI said retest every 6 mos and eat normally. We didn't like that advice, so found a new doc and he ran EMA and checked vitamin D levels- she was POSITIVE on EMA testing (1:40, <1:10 normal range) and her D was 24. This was despite the multivitamin with D, and D drops I give her during winter season, good diet and sunlight she normally gets. So, he agreed that yes, starting strict diet was the deal. Six months later, vitamin D more than doubled to 58. tTG normal, and EMA negative! And, no joint pain, ever again

Reading the prior post regarding EMA testing, I get more and more confused. No damage on my daughter's biopsy, despite being so positive on EMA testing. The doc days the damage was there, just was missed or patchy.

I don't regret the scope, but if my other kiddo tests + on labs at one point, no reason to scope him!

Good luck!

[Half Asleep]

Thank you for your answers.  Gives me some hope that maybe they won't push for the scope.  I'm sure that getting a diagnosis is a relief for people who have been suffering with stomach problems, but we weren't.  I went to the doctor b/c my anxiety had gotten crazy out of control.  The doctor ran a ton of bloodwork and a 24 hr saliva test.  I had no idea I was being tested for celiac.  So this was a huge shock, and it really hasn't helped the anxiety level!  I'm really worried about how we're going to handle back-to-school being that we are so new to gluten-free.  It was one thing for me to have it- you know it's a whole other thing when it's about your kids!

[notme]

celiac is systemic, thus affects your nerves (as well as sooo many other things you might find that will clear up once you start eating gluten free)  my anxiety level is so much better since i was diagnosed - whoda thunk??  never heard of celiac!! lolz - welcome and you have the wealth of experience of so many moms with celiac/ncgi kids on this forum  

[Half Asleep]

celiac is systemic, thus affects your nerves (as well as sooo many other things you might find that will clear up once you start eating gluten free)  my anxiety level is so much better since i was diagnosed - whoda thunk??  never heard of celiac!! lolz - welcome and you have the wealth of experience of so many moms with celiac/ncgi kids on this forum

thank you.  I am 3 weeks in to eating gluten free.  Really hoping I see an improvement soon.  Doctor found nothing else wrong with me in all that testing, so if it's not the celiac making me feel mental, I'm in trouble!

[Mom-of-Two]

Half asleep--- EXACTLY!!! those are my words exactly, I could deal with it myself, but having it be your kid is so different, isn't it!??? If you would like to message me or email me personally, or just post here, I am happy to help you with school lunches! My daughter had just become gluten free prior to start of school last year, so I can help you with the transition! It feels WAY more overwhelming than it actually IS once you are doing it, I promise you that! Is he a sandwich eater? After many attempts we have settled on Canyon Bakehouse 7 grain bread which to us, is hugely close to wheat bread.

Also- my daughter's EMA test was also 1:40 (like your son's) and she had totally reversed to negative in only 6 months

And if I didn't clarify before- I do not see the need for a scope---- as I said, my daughter was hugely positive on bloodwork, but had normal biopsy, despite having that strongly positive EMA test. My biopsy DID confirm celiac, but was not nearly as severe as she suspected, I did not even have destroyed villi despite my all positive celiac panel. The point is, the end result is the same for your son----- he can never eat gluten again. Unless the dr wants to check anything else during a scope, I don't see the need.

[Half Asleep]

Half asleep--- EXACTLY!!! those are my words exactly, I could deal with it myself, but having it be your kid is so different, isn't it!??? If you would like to message me or email me personally, or just post here, I am happy to help you with school lunches! My daughter had just become gluten free prior to start of school last year, so I can help you with the transition! It feels WAY more overwhelming than it actually IS once you are doing it, I promise you that! Is he a sandwich eater? After many attempts we have settled on Canyon Bakehouse 7 grain bread which to us, is hugely close to wheat bread.

Also- my daughter's EMA test was also 1:40 (like your son's) and she had totally reversed to negative in only 6 months

And if I didn't clarify before- I do not see the need for a scope---- as I said, my daughter was hugely positive on bloodwork, but had normal biopsy, despite having that strongly positive EMA test. My biopsy DID confirm celiac, but was not nearly as severe as she suspected, I did not even have destroyed villi despite my all positive celiac panel. The point is, the end result is the same for your son----- he can never eat gluten again. Unless the dr wants to check anything else during a scope, I don't see the need.

Thank you, Mom-of-Two.  He will eat sandwiches with just cheese or just peanut butter.  I haven't seen the brand of bread you mentioned.  I have bought Kinnickinnick and Udi's (or Rudis-always mix them up!)  I'm just worried about him getting contaminated and not making it to the bathroom.  Though the doc did say since he didn't have stomach problems before that it probably wouldn't happen.

 

We did see the GI doc today, and he did push for the scope.  What I really don't understand is that he said he's fairly certain from the tests that my son is positive, but if they don't find any damage that he could still eat gluten unless he starts having stomach symptoms.  Does that make any sense at all???  I'm picturing my gyno saying they found precancerous cells on my exam, but let's just wait and see what happens before we do anything.  It sounds crazy to me to let him keep eating the stuff when it will certainly eventually cause damage.  So for now, my husband and I think no scope, and gluten free with the help of a dietitian.  

[nvsmom]

We did see the GI doc today, and he did push for the scope.  What I really don't understand is that he said he's fairly certain from the tests that my son is positive, but if they don't find any damage that he could still eat gluten unless he starts having stomach symptoms.  Does that make any sense at all???  I'm picturing my gyno saying they found precancerous cells on my exam, but let's just wait and see what happens before we do anything.  It sounds crazy to me to let him keep eating the stuff when it will certainly eventually cause damage.  So for now, my husband and I think no scope, and gluten free with the help of a dietitian.  

That sounds crazy to me too! The EMA IgA is 98-100% specific to celiac disease, that means that out of 100 positive tests, 98-100% of them are acused by celiac disease. The tTG IgA is almost as good. With the two tests, how could he doubt it is celiac disease just because they didn't see it with their own eyes? I'm glad you are not listening to him and taking the safer road. Why risk your child's life? (This is where I got my numbers, page 12: Open Original Shared Link )

 

I suggest getting some good celiac disease books and reconsidering the dietician. It seems the folks who benefit the most from a dietician are the types who don't do a lot of research, and that doesn't sound like you. I would be willing to bet that by time you see a dietician, you'll know as much, if not more, about the gluten-free diet. I really liked Green's book, Silent Epidemic, Celiac for Dummies was pretty good and there are many many good gluten-free, dairy-free/casein-free cookbooks out there. There are a few good ones that are egg and nut free too. Paleo diets are often a good way to go for good heath.  There are a few books on celiac disease for kids that might work for him; most are for young kids but I think I remember G.F Kid (no period) being appropriate for upper elementary and/or middle school.

 

Best wishes with the diet. Don't expect him to feel great right away; he could hit withdrawal and with those teenage hormones... well, that might be a bunch of fun for you.   Good luck.

[1desperateladysaved]

My anxiety got worse before it got better.   I am currently 18 months gluten free and am still feeling changes daily of late.    Please don't resign yourself to a life full of anxiety, yet.  Have you had your adrenals checked?  They are supposed to help handle stress, but mine were nutrient deprived from 30 years of celiac disease.   My doctor checked my adrenals by using orthostatic blood pressure and nutrient tests.  I was given herbal support for my adrenals and it seems to be helping. 

 

Did you do any nutrient testing?  Getting the nutrients you need can help.  More time is another factor that you need to consider.

 

Get Well, ***

 

D

[Mom-of-Two]

I SO understand how you feel. Even after my daughter tested + on tTG and EMA tests, because her biopsy was normal, they still said we had two options: 1) gluten free diet and retest in 6 months or 2) continue eating as normal and retest in 6 months or sooner if symptoms arise. Given that I myself have celiac too, and her body is clearly having an autoimmune response, as seen in her blood work, why in my right mind would I sit around and wait for my kid to have "symptoms"? If he is not having stomach problems now, why wait around till he does!? Count it as a blessing, honestly that is the best way to move forward.

You can check their website, and put your zip in to see where they carry it- I get mine 25 mins away at a natural foods store where they carry tons of gluten-free items. You will find Udi's or Rudi's bread easily, and if you enjoy it, great- but I was shocked the difference when I found Canyon Bakehouse. I buy 6-8 loaves at a time (approx. $5 per loaf) and pull out a loaf at a time. It makes great sandwiches, toast, or grilled cheese

Open Original Shared Link

I will say that in one year, my daughter has not had one single issue, from cross contamination or anything, not a single stomach ache or problem, I too feared the worst. But we've found that so long as we ask questions and do the extra work, we can both eat and live fairly normally. We recently took a 2 week vacation, and probably ate out 6-8 times (more than we have total since getting our diagnosis). She has never had any issue and we ask tons of questions, seek out places with dedicated menus and have had great service and care from managers, etc. it gets easier. We don't eat out often at home, because that risk is there, and I do try to simply avoid it, but for nice occasions, it has been no problem.

We had no problem in school last year, you will encounter numerous birthday treats, parties and special treats that seem to come up weekly! I send a ziplock bag at start of year with safe candy (DumDums, Hershey's, York Peppermint Patties) in our kit along with an "emergency" few gluten-free granola/protein bars in the event that your child drops part of his lunch, etc since ordering is no longer an option.

Because they heat lunches for the kids, I send pasta, chicken, leftover spaghetti, you name it- maybe a PB sandwich 1-2 times a week or apples w/PB, fresh fruits and veggies, popcorn, string cheese, greek yogurt tubes that I freeze, gluten-free pretzels for crunch, they make some more kid friendly crackers now- Crunchmaster makes some cheese crisp ones, Van's has a nice cheddar one.

Keep in contact with the teacher, my daughter's teacher would email me with a question- for example when they made a craft with marshmallows and she wanted to be sure she could eat the ones remaining, or if she knew ahead of time someone was bringing in a birthday treat or occasion. On party days, I tried to send in the similar equivalent, so our class did crunchy, fruit and sweet- I would do popcorn, apples, and a cupcake for example (which I keep frozen and ready for such days).

We have had NO negative experiences. It gets easier!!!!!

[Half Asleep]

Thank you for all your responses.

nvsmom- I will look up those books.  My doctor suggested the paleo diet too.

1D-I had a ton of bloodwork done (and saliva)-nutrients included.  Everything the insurance would pay for plus $1200 out of pocket.  I was desperate to figure out what was causing my anxiety.  I was low on a few things and have gotten supplements for all of that-one of them is Adrenevive for the adrenal thing.  Dr suggested glycine at my last visit-gonna pick some up tomorrow.

Mom-of-Two-thank you for giving me hope! I'm lucky in one way because he's in middle school and they don't do birthday treats anymore.  But most of the teachers allow them to eat snacks in class and they like to share.  The don't have any way to heat lunches, so we will be on sandwiches, but that's what we're used to, and so far he has liked all the breads we have tried.  He actually told the GI doctor that gluten free is not that bad and he'd rather just stop eating gluten than have the scope done. :-)  We'll see when he's back in school and surrounded by kids eating all his favorite things that he can't have.  Fortunately, there are gluten-free versions of a lot of what we like, so he won't feel too deprived.  We may go broke buying the stuff, but...;-)

 

I did request a Health Management plan (or whatever our school calls it) when I completed his registration.  I will also speak to his teachers, just so they are aware in case he does have any problems at school.