5 Year Old - In Testing Stage - Thoughts And Advice

[brinleys]

Our daughter has been struggling for 7 months with various stomach and digestive issues.  Severe abdominal cramping and pain , nausea and occasional vomiting, diarrhea or constipation, an occasional odd rash and a rare fever, along with decreased appetite and weight loss.  

Our doctor initially attributed it to a fairly rough flu season coupled with the possibility of a stomach virus.  At a follow up visit with symptoms persisting her ordered a blood draw to test for Celiac disease, which came back positive.  The doctor is recommending a follow-up blood test to confirm. She had the blood work done today - It has been just over 2 weeks - because she is so miserable  

What is our best course of action now? She is so miserable, she is on Zofran (as needed for nausea), Levicin for abdominal cramping several times per day, and an antacid.  She has very little appetite - preferring things like chicken broth, frozen yogurt and jello - and has lost 8 pounds - she is down to 34 pounds.  Wouldn't it be better to just go with a diagnosis and begin diet change instead of letting her continue to suffer for another month?  Also how many people had the biopsy to confirm diagnosis??   I am concerned about putting her through something like that if the blood test is fairly accurate (which my doctor said it's very accurate)

Thoughts??  If this were your child how would you treat this situation.  

[mommida]

With my daughter's case I would opt for the endoscopy with biopsy.  She was diagnosed with Celiac and Eosinophilic Esophagitis.  The scope can rule out other diseases and get a baseline on the amount of damage.  It also rules out any doubt, "Do I really have to be on a gluten free diet for the rest of my life?"

[Ollie's Mom]

If your doctor thinks the blood test is accurate, why is he saying a retest is required?

If the doc will diagnose on blood test alone, or blood test with positive response to the diet (including a decrease in antibody levels after being on the gluten-free diet) I'd put her on a gluten-free diet right away. And if the doc won't diagnose and she continues to lose weight, I'd just put her on the diet anyway. Losing that much weight is awful.

As for the endoscopy, that is up to you. It is possible that the doc won't diagnose without a positive biopsies, so if you need an official diagnosis for your daughter, that may be necessary. And as mommida points out, it could show other conditions. But I would insist on it asap (within a week) given how I'll your daughter is. But I'm pushy like that. ;-)

[Cara in Boston]

With two positive blood tests and all her symptoms, it seems pretty obvious she has it.  If your doctor will diagnose her based on that, you do not need to go any further.  Some doctors require a positive biopsy to give a diagnosis.  

 

The biopsy could also come back negative - because the damage is not extensive enough or the doctor simply missed it.  This could add to the confusion and cast doubt on a firm celiac diagnosis - even if she has it.

 

It is clear she has it.  The diet can also be considered "evidence" . . . if her symptoms decrease once she is gluten free, you will know for sure.

 

Be sure to get everyone in the family tested - even if there are no symptoms.

 

Cara

[brinleys]

I finally got copies of her lab reports - we have been referred to a ped GI and have an appointment at 10 next Tuesday.  Our regular ped is now saying that she is "borderline positive" - her lab results are below: 

 

1st set of labs: 

IgA 205   Range 33-200 

 

Endomysial IgA  <1:10    Range - Negative if <1:10 

 

Gliad IgA 28   Range Neg. <20;  weak positive 20-30, strong positive >30 

 

Gliad IgG  2    Range Neg. <20;  weak positive 20-30, strong positive >30

 

 

2nd set of labs (I don't have everything back yet just the IgA - the rest will be back by Friday) 

 

IgA 236   Range 33-200

 

 

 

We ended up in the ER with her last night due to her abdominal pain and vomiting.  They were able to get her re hydrated and we came home after a few  hours.  The ER doc said to start a gluten free diet, but when I called the Ped GI after we got the referral this morning his office said not to change her diet until after we see the doc..... ugh - I'm hoping the next 5 days go quickly and that if she needs a scope they can do it rapidly because I feel awful for her.  

[nvsmom]

If you think a biopsy is needed, I too would push for the endoscopy as soon as possible. Retesting the blood tests seems pretty useless - my doctor likes to do retest too and he ALWAYS accepts the normal test and discards the abnormal test... which has been to my health's detriment because it delayed treatment in a separate disorder for years.

 

Speaking of test results, get hard copies of everything and research her results as a double check. Sometimes doctors read labs wrong or miss things so it's good to have those tests to refere back to.

 

If the doctor is not planning a biopsy, she should go gluten-free. When blood tests come back positive, it is almost always caused by celiac. You can be sure it's celiac disease if there was more than one positive test. EMA Iga and the newer DGP tests are very specific to celiac disease, and if she had a positive ttg test along with another, then that is also another very sure diagnosis.... Even if the doctor won't give an official one.

 

My boys all tested negative for celiac but I suspected some health issues were gluten linked so they went gluten-free. Two out of three of my boys have had obvious health improvements while eating gluten-free, and while they have no official diagnosis, i know I did the right thing. You don't need a diagnosis to go gluten-free, it is just helpful if you need accomodations in the future but parents can work around that... If she can't eat school cafeteria food in the future, it's no big deal -she can pack a lunch which is probably healthier anyway.

[Cara in Boston]

If your biopsy is scheduled weeks away, see if you can get on the "on call" list.  Kids need to cancel the procedure if they get a virus and have a fever or something.  If your hospital does a call list, they can call you if something opens up sooner.  

 

It is hard to keep feeding your child something you know is harmful.  Our diagnosis took 4 months from initial visit to confirmation with biopsy.  It was a difficult 4 months, but in the long term (80+ more years on the diet) it is a very short time.  

 

If she is having so much difficulty continuing to eat gluten, hopefully your doctor will either diagnose her without waiting or schedule you to get in there very, very soon.  

 

Best of luck -

 

Cara

 

While you are waiting, start trying out some gluten-free foods so it is not all overwhelming when the time comes to be 100% gluten free.

[stanleymonkey]

I'd keep taking her to the er when she is bad, it may make them bring the gastro to YOU! If they suggest the gluten free diet, make sure they know the gastro said no till he has seen her. They will like lynhave a gastro down there pretty quick! While we were waiting on tests for our daughter she was really ill, and they sped up our initial visit from 5 weeks to a few days. ER docs get a bad rap sometimes, nut it was our ER doc that said huh she's got a huge belly and is really skinny, has anyone suggested celiac disease? At that point we'd been told toddler diarrhea.

Hope the next 5 days go quick. If the gastro wants more waitin time before he does an endoscopy tell him how worried you are with her medical condition right now, ask if he'll diagnose on the blood work, and a response to the diet. My husband works in a hospital he say all the time there is no such thing as anborderline positive. It's negative or positive. He's sen a gastro since his teens and worked with him for 10 years and he told him the same.

[frieze]

yeah, that is like being a little bit pregnant.....

I'd keep taking her to the er when she is bad, it may make them bring the gastro to YOU! If they suggest the gluten free diet, make sure they know the gastro said no till he has seen her. They will like lynhave a gastro down there pretty quick! While we were waiting on tests for our daughter she was really ill, and they sped up our initial visit from 5 weeks to a few days. ER docs get a bad rap sometimes, nut it was our ER doc that said huh she's got a huge belly and is really skinny, has anyone suggested celiac disease? At that point we'd been told toddler diarrhea.
Hope the next 5 days go quick. If the gastro wants more waitin time before he does an endoscopy tell him how worried you are with her medical condition right now, ask if he'll diagnose on the blood work, and a response to the diet. My husband works in a hospital he say all the time there is no such thing as anborderline positive. It's negative or positive. He's sen a gastro since his teens and worked with him for 10 years and he told him the same.

[brinleys]

Thank you all so much!!  She's been very very slowly starting to feel better - right now she's keeping liquids down and is busy being a grump - though I don't blame her.  The meds seem to be easing her symptoms some ... that or the 3 days with no food has calmed her belly down .... I will update after her appt on Tuesday!