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Between Blood Tests And Biopsy

Mom2Will

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Mom2Will Rookie
Mom2Will
Posted

Ok, first time ever posting so I'll try to be clear with my question. My 8 yr old son has had gastro type symptoms for years. Loose stools for probably 5 years and abdominal pain/gas/bloating that has come and gone for the past several years. The dr. always dismissed the possibility of an intolerance because his growth pattern was always so good and steady and his pain wasn't constant. Well, he had been feeling poorly for the last 6-8 weeks and even lost a couple of pounds during that time and so she ordered blood work.

His bloodwork came back positive for celiac. There are a couple of tests that I'm not sure if I wrote down correctly but the one I am sure about is tTG and his level was 168 where normal is 0-19. Based on this she scheduled an appt. for us with a gastro and said to have him go gluten-free. I questioned her whether he would need to keep eating gluten until after his appt with the gastro in case he wanted to do other tests and she said that wasn't necessary. That since his blood work was positive we could start eating gluten free now and that if he did order a biopsy that it wouldn't be enough time for the intestines to heal and give a negative result. The appt. with the gastro is in less than 2 weeks and I assume we could get a biopsy scheduled not too far out from that if necessary.

So my question is: Is is necessary to do a biopsy if the tTG comes back so high? Also is going gluten-free for 2-4 weeks enough to cause a negative biopsy after positive bloodwork?

Thank you - sorry so long!

Melissa

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Skylark Collaborator
Skylark
Posted

Welcome! That's not long and very clear.

Some people opt out of the biopsy with an unambiguous TTG. It partly depends on whether you can get a Dr. to positively diagnose your son for school meals and college. With the diagnosis, he is entitled to gluten-free food under ADA.

As far as gluten affecting the biopsy, I would not recommend he stop eating it just yet. Two weeks probably wouldn't do anything but kids heal fast and a month might be too long if he's only mildly positive on biopsy. You will always question whether a negative biopsy was valid.

Mom2Will Rookie
Mom2Will
Posted
  • Author

Thanks for the reply. I guess I'm not sure what the gastro will want in order the make the diagnosis. The pediatrician seemed positive that he does have celiac. Based on 5 years of symptoms like constant loose stools, recurrent stomach pains, canker sores, eczema, and a fairly high tTG test I'm convinced that he does have celiac.

I'm a little reluctant to put him through an endoscopy with all of the evidence pointing to celiac disease. We had to have 3 people hold him down to draw blood because he was hysterical. I can't imagine him having to get an IV and know that they are going to stick a tube down his throat. I'm hoping the gastro will take into consideration the symptoms and blood work and give us a diagnosis.

Skylark Collaborator
Skylark
Posted

It really does sound like celiac. You might talk to your pediatrician about the possibility of diagnosing him for school as well as talking to the GI. They should both understand the importance of diagnosis for school food and response to the diet might be enough. Hopefully with his serious fear of procedures the endoscopy can be avoided.

Takala Enthusiast
Takala
Posted

Maybe the "eczema" is really D.H. ? You could try for a skin biopsy next to the rash and see if that is positive - that is an official diagnostic route.

mommida Enthusiast
mommida
Posted

An endoscopy at this point would be done to completely diagnose Celiac and rule out any other further disorders.

Children having an endoscopy are usually put under sedation by gas before any I.V. is started. ;)

Mom2Will Rookie
Mom2Will
Posted
  • Author

It's just so confusing when you get conflicting information. As I said earlier, the pediatrician said he should stop eating gluten now and that it shouldn't matter for a biopsy if one was ordered because it would be too soon for his intestines to heal. (There is 11 days between when he started going gluten free and when he will see the gastro. I don't know how long it would take to order a biopsy if he decides he wants one - probably not that long where we live.) So I called the gastroenterologist's office and the nurse there told me to go ahead and get him started on the diet since we already did the blood work. I thought "Ok, so they agree with each other, we'll go gluten free." But then I called today to make an appointment with the dietician both offices recommended and she tells me to make sure he's still eating gluten until after his appt. with the gastro!

I don't know what to think. He's been having symptoms for 5 years so I don't necessarily have a problem with giving him gluten for another 2 weeks or so. My concern is that we already made a big deal to him about how he can't eat gluten, how it hurts his intestines and cleaned out the pantry and bought him all new food. He is so on board with the gluten-free diet that I don't want to confuse/derail him and tell him that after only 2 days on his new "diet" that we have to go back to eating the gluten that hurts him. And for all I know, the gastro might not even want to do a biopsy since I understand that not every single case requires it now.

It would be nice if everyone could just agree. Do I listen to the pediatrician? The nurse from the gastro office? The dietician? I just want to do what is best for my son..........

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Skylark Collaborator
Skylark
Posted

As I said before, you will always question the results if a biopsy comes back negative and you took your son gluten-free for a few weeks before. We have people on the board who get into that situation all the time and they are sort of stuck. This is a one-time opportunity; you will never want to put him back on gluten again if the diet works well for him.

I understand that he might find it confusing but kids are pretty smart. He can probably understand that a special doctor wants to talk to him while he is still eating gluten.

faithforlife Apprentice
faithforlife
Posted

Ok, first time ever posting so I'll try to be clear with my question. My 8 yr old son has had gastro type symptoms for years. Loose stools for probably 5 years and abdominal pain/gas/bloating that has come and gone for the past several years. The dr. always dismissed the possibility of an intolerance because his growth pattern was always so good and steady and his pain wasn't constant. Well, he had been feeling poorly for the last 6-8 weeks and even lost a couple of pounds during that time and so she ordered blood work.

His bloodwork came back positive for celiac. There are a couple of tests that I'm not sure if I wrote down correctly but the one I am sure about is tTG and his level was 168 where normal is 0-19. Based on this she scheduled an appt. for us with a gastro and said to have him go gluten-free. I questioned her whether he would need to keep eating gluten until after his appt with the gastro in case he wanted to do other tests and she said that wasn't necessary. That since his blood work was positive we could start eating gluten free now and that if he did order a biopsy that it wouldn't be enough time for the intestines to heal and give a negative result. The appt. with the gastro is in less than 2 weeks and I assume we could get a biopsy scheduled not too far out from that if necessary.

So my question is: Is is necessary to do a biopsy if the tTG comes back so high? Also is going gluten-free for 2-4 weeks enough to cause a negative biopsy after positive bloodwork?

Thank you - sorry so long!

Melissa

I can share our story. My son had the same symptoms for 3-4 yrs before I asked my doc to refer me to a GI. We proceeded with testing (I had never heard of celiac). His antibodies were positive-2 of them - and his genetics were high risk. His endo showed severe inflammation and the biopsy which was taken at the same time showed no Villous atrophy (yet). The GI still prescribed strict gluten-free and helped the rest of our Fam get tested. Turned out I was celiac too much to my surprise. I've been gluten-free for 6 months and barely got brave enough for my endo and it still showed obvious scalloping of my duodenum (evidence of autoimmune reaction to gluten). I decided I wanted the endo just so I could say we did it. And I didn't want to wait too long.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

The GI may want to do the endoscope to see if there is any damage..and document how much?

A biopsy doesn't seem necessary to me if his blood tests were positive. There are false negatives..but I've never heard of a false positive.

You have to decide what you feel is best. I think some Dr.s and GIs think of the tests as science..and don't seem to put the way the patients are feeling at the top of their priorities?

Mom2Will Rookie
Mom2Will
Posted
  • Author

Well, he's only been completely gluten free for 2 days. It's not like going back on gluten will really make any difference at this point. I guess that if the GI dr. really wants to do more tests and has a compelling reason why he wants them then I would want them to be as accurate as possible.

I've read that there are a few things that can give a false positive for celiac disease such as conditions like Type 1 diabetes, liver disease or congestive heart failure. However, since he has no symptoms of these conditions and quite a few symptoms of celiac disease and has for years I would think the diagnosis would be pretty clear cut with a high positive blood test. But then again, I'm not a dr.............

I talked to him about eating gluten at least until his next dr. appt. and at first he was horrified: "But my stomach will keep hurting and my intestines will get smooth!" But I think I've gotten through to him on how we need any additional tests the dr. does to be accurate and he can use this time to get a last chance at some of his favorites. It also gives me a week or so to really figure out how to clear out my kitchen, deal with cross contamination and options for him to eat.

Skylark Collaborator
Skylark
Posted

This is hard, I know. I think your son will sort it out just fine though, and you won't be second-guessing yourself. :)

Avalon451 Apprentice
Avalon451
Posted

I can relate to the issues you're going through. My 16 y.o. had positive biopsies both skin and endo. But she's older and was pretty calm and cool about the whole thing. My younger two daughters had positive blood too-- not as high as your son's, but fairly clearly celiac or at least highly gluten intolerant. The problem is that the 14 y.o. has been dealing with anxiety disorder and panic attacks for two years-- the worst of them triggered by having to go in for an outpatient operation to remove a cyst on her forehead. It's made her irrationally afraid of hospitals, medical procedures, etc. She's quite intelligent and reasonable, but when it comes to the idea of having any kind of procedure done where they will need to knock her out, all her reason flies out the window and she becomes a panicky mess. The 9 y.o. would probably be better, but she's still extremely reluctant to undergo any kind of invasive testing. So, we opted not to have endos done on them. They understand that we are assuming they are celiac and that this is a life-long deal-- no going back at a later date and doubting the diagnosis. My only worry is that we'll regret not having the official diagnosis when they get older and may need school accomodations for their gluten-free food.

That said, I can't believe your ped AND the gastro nurse both said it was ok to go gluten-free before he sees the GI doc. That's just basic knowledge. If you DO decide to do the endo, it will probably be a couple of weeks before they could get the endo scheduled, so you'd be a month gluten-free beforehand. That would be enough to skew the results in many cases.

Best of luck! Here's to better health for all of you, soon.

Mom2Will Rookie
Mom2Will
Posted
  • Author

It's definitely the anxiety about the procedure that I'm worried about. He sounds like your daughter and is very sensitive to everything like that. He will not watch a show that has blood in it of any kind - he won't even watch kid shows if someone gets injured. Getting a strep test is awful. One doctor thought she was being nice by showing him on herself how she was going to swab his throat. That was a huge mistake. He screwed his eyes shut and started screaming at her - don't do it, I won't watch, stop!! I tried to show him a diagram of the body to teach him about villi and his intestines and he would only come and look at the book once I assured him it was not a real picture and it was just a diagram.

But, I guess you do what you have to do. If he needs a biopsy then he needs a biopsy and we'll just have to deal.

On a side note, I'm so glad I found this board. Everyone seems to nice and supportive!

Mom2Will Rookie
Mom2Will
Posted
  • Author

Oh, and another question. I listed that they gave me his tTG results as 168 with 0-19 being normal. Another result I had written down (not sure if the name of the test is spelled correctly) but I have down that they tested for gliadin IGA and it came back as 162 with normal being 0-19. Can anyone tell me what this gliadin IGA test means?

Thanks!

Melissa

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