New And Conflicted

[BoosMomma]

My 10 year old daughter had endoscopy today and I will have to wait until next Friday to find out the results. GI doc prescribed a gluten-free diet and was about to send the RD to speak to us until I reminded him that I am an RD. I am comfortable with the diet; I am just confused about diagnosis. I guess I should explain how i got here.

 

My daughter has always had tummy issues and frequent headaches. Nothing to keep her down for too long but enough for me to think there may be a problem. So, a few weeks ago we had to go to dr for walking pneumonia and I decided bring up the tummy troubles. He suggested a celiac panel and testing for the big 7 food allergies. I got a call a week and a half later from the nurse, explaining that the celiac panel was "modestly elevated" and that I was being referred to pediatric GI specialist. I am not sure what I was expecting from our first visit to GI specialist, but I was surprised that after taking our history, he wanted to go ahead and schedule endoscopy. I left his office  and immediately started coming up with all kinds of questions. After researching, I was upset with myself for not getting the detailed lab results. So, I decided to be patient and wait to talk more about it today with GI dr. After the procedure, he brought the pictures in and there is no visible signs of damage. My husband took that to mean thereis nothing wrong with her. I knew that we would have to wait for biopsy results; I just wanted to know more about the numbers. I get all confused with the TTG and TGA or whatever it is. This is all I took away from the conversation- both numbers were just above the threshold. Like a point or something. If 5 is the maximum normal range, then hers was a 6. What is he referring to when he says "both numbers"?

 

So, long story short- I think the dr is proceeding as if he thinks that she has Celiac.However, he will not say that without the biopsy report. I asked what we would do if biopsy came back negative.He said that if it was inconclusive, then we would go about life as normal and check her again in a year. He explained that 3% of people have numbers that are a little high. I took that to mean there is a 97% chance she has celiac. Am I being too negative? I am transitioning us to gluten-free diet and my husband thinks I am being ridiculous. He thinks we should wait until next Friday. I am going to hold my ground at the risk of being viewed as the devil for taking away her favorite foods without a diagnosis. There is never a good time to make a big change like this, but I think fall season may be the worst. Football parties, fall festivals, halloween, thanksgiving, Christmas, etc...

 

enough of my rambling. Any insight would be much appreciated!

[SMRI]

Can you get a copy of the tests they did an post the results with the ranges?  Do they have online access maybe?  Knowing what the actual tests were and the scale will help us answer your questions better.  I'd wait a bit before going gluten free in case they need to run more tests.  If they only did the TT IgA, they may want to run the full panel, for example.

[BlessedMommy]

It's common to not see damage visibly during the endsocopy, but the samples may show damage. 

[cyclinglady]

With a positive blood test, she probably has Celiac Disease. The biopsy should confirm it. But even if the biopsy in inconclusive (think about it....the small intestine is vast), the next step would be diet. If she gets relief, then you have your answer.

I know you are a RD, but here are some tips from from our "Coping" section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

BTW, I was barely positive on my blood test (just one celiac disease test was positive) and I had moderate to severe damage on my biopsy.

If the biopsy is negative, I would try the diet and not wait. Check out the University of Chicago's celiac website. Or get another opinion. My kid tested negative (she has both parents with celiac disease) and will continue to get tested every few years because we both do not display intestinal issues (I had anemia). But if she were positive, I would put her on the diet even with a negative biopsy. You daughter is growing. So many things like bones, puberty could be delayed or damaged. Is that worth it?

Just do some more research, please!

[BoosMomma]

Thank you for the feedback!

 

 I just talked to the nurse from pediatricians office. She said that the AB,IGA (is this TTG?) was 5 and normal is less than 4.

She said immunoglobulin A was 113 (normal)

IGA titer is positive (supposed to be negative)

Endomysial Antibody titer was 1:5 and normal is less than 1:5....

 

I hope I wrote it down correctly. And I hope you can help me understand what this means. 

I had my blood drawn today. Inquiring mind (mine) wants to know....

[BoosMomma]

With a positive blood test, she probably has Celiac Disease. The biopsy should confirm it. But even if the biopsy in inconclusive (think about it....the small intestine is vast), the next step would be diet. If she gets relief, then you have your answer.

I know you are a RD, but here are some tips from from our "Coping" section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

BTW, I was barely positive on my blood test (just one celiac disease test was positive) and I had moderate to severe damage on my biopsy.

If the biopsy is negative, I would try the diet and not wait. Check out the University of Chicago's celiac website. Or get another opinion. My kid tested negative (she has both parents with celiac disease) and will continue to get tested every few years because we both do not display intestinal issues (I had anemia). But if she were positive, I would put her on the diet even with a negative biopsy. You daughter is growing. So many things like bones, puberty could be delayed or damaged. Is that worth it?

Just do some more research, please!

I will continue to research and we are already moving to gluten-free diet. I know it's all or nothing and we will get there. I just have to educate my husband so he'll know why we have to make such a huge change. I know it's not easy and that's what is freaking me out. I can do it, but it is going to kill me when other people undermine my efforts. So many people are ignorant....I'll just have to school them

[Solandra]

My GP told me that a positive is a positive.. It's pretty rare to have a false positive, but false negatives are slightly more common. I would wait for the biopsy results, but I don't see anything wrong with trying gluten free for a couple of months and seeing how she does.

[BoosMomma]

Update- the biopsy "was not suggestive of celiac" but duodenum was a little irritated from acid. Also, biopsy showed lactose malabsorption. Dr wants to put my 10 year-old on zantac and lactose free diet. This is all I know because he left this on my voicemail at 9:05 pm last night. I carried my phone around all day yesterday waiting for his call and still missed it. Ugh! She has been gluten-free since the endo last wednesday (over a week) and I'm not sure if the Dr intends for me to keep it that way. I don't really care because I've decided to keep it that way. I had already moved her to lactaid so now I just need to worry about other sources of lactose and the acid. I am not opposed to short-term use of the acid reducer to help calm the gut, but no way am I going to do it long-term. I have more questions than answers. EMA was positive TTG was 5 (supposed be less than 4). Could this have anything to do with the lactose malabsorption? Or would the lactose malabsorption have any effect on her celiac panel results. I think I know the answer to this but I am looking for some feedback from those with experience. thanks!!!

[cyclinglady]

When villi are damaged from celiac disease, they can not release the enzymes to digest foods (e.g. Lactose). Often this is temporary (six months or more) until intestinal healing occurs.

I would get copies of all the reports. Visually, my endoscopy looked normal. The biopsy from reviewed by the pathologist showed differently.

[Cara in Boston]

A positive blood test is a positive blood test.  That the endoscopy was "not suggestive" does not rule out Celiac (the scope can only confirm it).    Many doctors want to wait until there measurable damage before starting the diet.  If your daughter is already having symptoms, why wait.   Yes, the diet is not easy . . . but it sounds like you already know it is necessary.  

 

All first degree relative should also be tested, regardless of symptoms.  

 

I have read that lactose malabsorption can be a "symptom" of celiac (due to damage) and that after a few weeks of being gluten free (different for everyone) you may be able to start adding dairy products back into her diet.

[nvsmom]

So, long story short- I think the dr is proceeding as if he thinks that she has Celiac.However, he will not say that without the biopsy report. I asked what we would do if biopsy came back negative.He said that if it was inconclusive, then we would go about life as normal and check her again in a year. He explained that 3% of people have numbers that are a little high. I took that to mean there is a 97% chance she has celiac. Am I being too negative? I am transitioning us to gluten-free diet and my husband thinks I am being ridiculous. He thinks we should wait until next Friday. I am going to hold my ground at the risk of being viewed as the devil for taking away her favorite foods without a diagnosis. There is never a good time to make a big change like this, but I think fall season may be the worst. Football parties, fall festivals, halloween, thanksgiving, Christmas, etc...

 

enough of my rambling. Any insight would be much appreciated!

 

Eek! Don't listen to that doctor.  A positive EMA IgA and a positive tTG IgA (or tTG IgG) is definitely a celiac diagnosis - in fact I had those two positive tests and my doctor diagnosed me on the spot. Look at thisOpen Original Shared Link for how specific to celiac disease those two tests are - combined they are considered conclusive.  See the top of page 11, where discussing the EMA IgA they say: 

 

IgA endomysial antibody testing is moderately sensitive (around 80%) and highly specific (with close to 100% specificity) for untreated (active) celiac disease

 

That EMA (endomysial) test means celiac disease. With the presence of celiac disease symptoms (and your daughter's are the same as mine when I was a child) there really can be little doubt it's celiac disease.

 

That doctor wants your daughter to keep eating gluten so that she will accumulate more intestinal damage that they will hopefully catch next time (1 in 5 celiacs has a negative biopsy), and so her test numbers will get worse.  I think it is pretty sad that he is encouraging another year of less than ideal health  rather than suggesting the gluten-free diet or doing genetic tests!  Sad.

 

Dr Fasano, the leading celiac disease researcher, says to have a celiac diagnosis, the patient should meet 4 out of 5 of the following criteria:

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

Your daughter has met numbers 1 and 2.  Number 3 (biopsy) was not positive but it sounds like she is on her way there. Becase she had a positive EMA IgA, I would bet money that she would have positive genetic tests if you had them done.  As for number 5, after a few weeks or months on the gluten-free diet I bet her symptoms would improve and that she will no longer have lactose intolerance - as Cyclinglady wrote, celiac disease causes lactose intolerance (in half of all celiacs) but it often improves as the months go by.

 

Best wishes to you.  Getting a celiac disease diagnosis is tough to get, and it is often hard to adjust to a new way of eating.  I hope she is feeling better soon and it will make all the confusion and effort worth it.... Just think of the possible years of future bad health that you are saving her by doing the research, testing and diet changes now.  Good job, Mom!