Blood Test And Endoscopy - 7 Year Old

[dblatchford]

I was diagnosed with celiac disease a few months ago, and my GI doctor prescribes to the idea that the blood test is accurate enough to provide a diagnosis.  I did have an endoscopy, where minimal internal damage was turned up, and the biopsies came back clear.  He labeled my case as "latent" and said I still have celiac disease and should follow a gluten-free diet.

 

So, I had my children tested.  My daughter had a positive blood test.  Like me, she doesn't have major digestive issues, but she does have an occasional upset stomach, along with anxiety/ADD.  Anyway, her GI doctor prescribes to the idea that he will not diagnose celiac until he also gets a positive biopsy on her.  Everything he said in yesterday's appointment contradicted what my own doctor had told me, leaving us feeling very confused.

 

I am having a very hard time making this decision, because I feel like I am being told two different things.  And, if my 7 year old daughter's major presenting issue is anxiety and panic attacks, I really dread putting her through an endoscopy.  This is all new to us, and I am just looking for someone to weigh in and help me understand, so I know how to best advocate.

 

 

Here are her lab results:

Deamidated Gliadin IgA   result 34  (negative 0-19, weak pos 20-30, strong positive > 30)

Deamidated Gliadin IgG   result 34 (negative 0-19, weak pos 20-30, strong positive >30)

Endomysial Ab IgA           result "positive" (no number reference given)

tTg IgA                             result 43 (negative 0-3, weak pos 4-10, positive >10)

t-Transglutaminasa IgG   result 15 (negative 0-5, weak pos 6-9, positive >9)

 

Any help anyone can provide to help me understand what I am looking at, and personal experiences would be very helpful.  Thanks!

 

[BlessedMommy]

Those tests are very strong positives. You may want to shop around and find a doctor who will diagnose without a biopsy or at least a doctor who will still diagnose based on the bloodwork, even if the biopsy is negative. What will this doctor do if the biopsy is negative? Will he tell her that it's fine to keep on eating gluten?

 

Negative biopsies should not overrule strongly positive bloodwork, IMO. That's how many people have gotten sicker and sicker is because they weren't damaged enough yet for the biopsy to come back positive.

[StephanieL]

If your Dr. has dx you and instructed you to go gluten-free, you have a dx.  Many Dr. are willing to dx a first degree relative of a dx patient by blood alone. I would seek out such a Dr.  Perhaps even your Ped has enough information to do so?  You should be able to find studies on this way of dx.

[SMRI]

I agree--those labs couldn't be more positive.  Can you take your daughter to your doctor?  The only real reason to get an "official" diagnosis is if she needs it for school.  Getting the endoscope isn't a bad idea just to get a baseline incase something pops up later.  

[nvsmom]

Her GI must be trying to do a money grab or something.  Those tests are incredibly positive. It is not often that I see a celiac panel that is entirely positive, and I've been hanging around this board for a few years now.

 

The EMA IgA is 98-100% specific to celiac disease meaning that out of 100 positive tests, a maximum of 2 are caused by something other than celiac disease... That's a pretty slim chance.  Those other tests are very good too.  They are all around 95% specific to celiac disease.  The tTG and EMA tests show there is an autoimmune attack on the inetstines, and the DGP tests indicate a gluten/gliadin sensitivity.  That's definitely celiac disease.

 

See this report (page 12) for more info: Open Original Shared Link

 

According to Dr Fasano (a leading celiac researcher) in oreder to be diagnosed with celiac disease you should have four of the five following criteria:

1. positive blood tests
2. positive genetic tests
3. positive endoscopy
4. symptoms of celiac disease
5. a positive response to the gluten-free diet

Open Original Shared Link

 

If it is important that she have an "official diagnosis", you could simply have the blood test done (DQ2 and DQ8 are high risk genes) and then go gluten-free... Or better yet, take her to your doctor and just get on with getting her healthy.  LOL

 

My doctor did not push the endoscopy either; I had some pretty positive tests.  I did not have the genetic tests either so "technically" I am not an official celiac.  LOL Right. 

 

Good luck and best wishes.  

[dblatchford]

Thank you all so much for the responses.  Unfortunately, my GI doctor is restricted to working with adults.  In my area, there are two specialty children's hospitals (UNC and Duke) that have pediatric GIs, and I was told those are the only folks that will work with children.  I was very disappointed in the response of my pediatrician also, he questioned my celiac diagnosis (positive bloodwork/negative biopsy) and said that the bloodwork was unnecessary medical intervention that I was imposing on my children.  So, I will likely be looking for a new pediatrician that is more supportive.

[StephanieL]

 

 

According to Dr Fasano (a leading celiac researcher) in oreder to be diagnosed with celiac disease you should have four of the five following criteria:

1. positive blood tests
2. positive genetic tests
3. positive endoscopy
4. symptoms of celiac disease
5. a positive response to the gluten-free diet

 

They will tell you that this criteria DOES NOT apply to children.

[BlessedMommy]

That's interesting, I didn't realize that. Are symptoms and diet response more vague in children?

[StephanieL]

That's interesting, I didn't realize that. Are symptoms and diet response more vague in children?

They gave no reason why it doesn't apply to kids. Not sure if it's a legal "we didn't study it in kids" or what. 

[SMRI]

I can see with kids that they want the scope to back up the bloodwork. It's and extra tool to use for 504 plans or whatever they might need for school to work in accommodations.  Whether this is the reason behind doing the scope or not, who knows.  I was positive on all 5, all the blood tests and the genetic tests.  They still wanted to do the scope for a baseline incase there were issues down the road.  The clinic I go to has plenty of money and the dr's are flat salaried dr so there really isn't a "money grab" component, but then again, I chose Mayo because they were so thorough.  

[BlessedMommy]

The irony is though that the scope is more likely to turn out falsely negative on kids, because their damage may not be as progressed as adults.

[nvsmom]

Thank you all so much for the responses.  Unfortunately, my GI doctor is restricted to working with adults.  In my area, there are two specialty children's hospitals (UNC and Duke) that have pediatric GIs, and I was told those are the only folks that will work with children.  I was very disappointed in the response of my pediatrician also, he questioned my celiac diagnosis (positive bloodwork/negative biopsy) and said that the bloodwork was unnecessary medical intervention that I was imposing on my children.  So, I will likely be looking for a new pediatrician that is more supportive.

 

  That GI is not a winner.

If the kids can't see a better doctor, or get a celiac disease diagnosis, I hope you will have them join you on the gluten-free diet.  Sometimes the system doesn't help and you need to work outside of the box to keep your family healthy.

 

Best wishes.

[nvsmom]

They will tell you that this criteria DOES NOT apply to children.

Wow. Really?  I have not heard that.  I wonder what their reasoning is for that too.  I'm pretty sure my kids are human eve if they dobn't always behave that way.  LOL

[StephanieL]

Wow. Really?  I have no heard that.  I wonder what their reasoning is for that too.  I'm pretty sure my kids are human eve if they dobn't always behave that way.  LOL

 Truth! lol  Perhaps it was his behavior at the appt. that made them determine otherwise! lol

 

(Kidding, he was 100% perfect for them when we were there!)

 

 

I agree that a scope on a kid is more likely to be false negative.  I don't get it. I don't understand but I am also in a very surly place with Celiac disease, Dr's and gold standards! 

[Cara in Boston]

Clearly, your daughter has celiac disease.  Every blood test is positive.  You need a new doctor.

 

Even if you take matters into your own hands and start the diet, she will still need follow up celiac care from a doctor who is informed and knowledgable.  Ask YOUR doctor to refer you to another pediatrician.  Doesn't even have to be a GI specialist at this point.

[Mom-of-Two]

I will tell you this~ I learned I had celiac a few years ago and had my two children tested. The first pediatric GI tested them both for tTG only. My daughter was very high (80 I think), I was crushed when I got the phone call. They said they would be doing an endoscopy, to "confirm". I hated every moment of the process because she had never had ANY surgery or anesthesia, and I had awful anxiety over the whole thing. I will say, it was not bad. Brief, no problems, SHE did great, I just didn't! she ate an omelet that night and woke up normally for school next morning. HOWEVER, her biopsy did not show celiac. I was frustrated when the GI called and said "she may have latent celiac, but we will retest in 6-12 months and she should keep eating normal diet". I hung up the phone and said to my husband, we are going to see someone else.

New GI did more tests, she was positive for endomysial antibody, low in vitamin D, and we discussed her joint pain and occasional reflux, in addition to me having celiac disease myself. He met with me after the results and said "I don't believe in latent, just because the biopsy did not show damage doesn't mean it isn't there~ He drew me a picture, which showed the intestines and how large it really is. If there isn't damage in one spot, there could be one inch lower or two inches to the left. He had no doubt that she had internal damage, because he said when you are positive for endomysial antibody, your intestines are absolutely damaged. We were 100% gluten free after that. All symptoms disappeared (things we didn't know were "symptoms"), at 6 month follow up all labs were normal, vitamin D had more than doubled, and endomysial antibody NEGATIVE. The GI was very pleased and said "that's how it's supposed to work". Take out the offending gluten and body works again.

Times are changing. Many docs are now taking positive labs as a diagnosis.

[dblatchford]

I will tell you this~ I learned I had celiac a few years ago and had my two children tested. The first pediatric GI tested them both for tTG only. My daughter was very high (80 I think), I was crushed when I got the phone call. They said they would be doing an endoscopy, to "confirm". I hated every moment of the process because she had never had ANY surgery or anesthesia, and I had awful anxiety over the whole thing. I will say, it was not bad. Brief, no problems, SHE did great, I just didn't! she ate an omelet that night and woke up normally for school next morning. HOWEVER, her biopsy did not show celiac. I was frustrated when the GI called and said "she may have latent celiac, but we will retest in 6-12 months and she should keep eating normal diet". I hung up the phone and said to my husband, we are going to see someone else.

New GI did more tests, she was positive for endomysial antibody, low in vitamin D, and we discussed her joint pain and occasional reflux, in addition to me having celiac disease myself. He met with me after the results and said "I don't believe in latent, just because the biopsy did not show damage doesn't mean it isn't there~ He drew me a picture, which showed the intestines and how large it really is. If there isn't damage in one spot, there could be one inch lower or two inches to the left. He had no doubt that she had internal damage, because he said when you are positive for endomysial antibody, your intestines are absolutely damaged. We were 100% gluten free after that. All symptoms disappeared (things we didn't know were "symptoms"), at 6 month follow up all labs were normal, vitamin D had more than doubled, and endomysial antibody NEGATIVE. The GI was very pleased and said "that's how it's supposed to work". Take out the offending gluten and body works again.

Times are changing. Many docs are now taking positive labs as a diagnosis.

Thank you so much Mom-of-Two, this is all very helpful info.