Need Help With Diagnosis For 10yr Old Daughter.

[Rainbow Divas]

Hi,

This is my first post, I have read lots of info on this forum (thanks for that)

My 10 yr old daughter has suffered for a long while with headaches, nausea, dizzyness, lethargy, stomach cramps and recently she was tested as anaemic.

Her iron level was under 1. Our Dr. sent her to a paedatric enterologist, who listened to her symptoms, looked at her iron level and said "I think she is Celiac"

He then arranged for another set of bloods to determine iron levels, and celiac testing.

The iron came back at 12 (this is two weeks after the first test) and she tested with positive markers in her blood for Celiac.

The paediatric enterologist then sheduled her for a biopsy, and he told me that the results were negative immediately after surgery - we do not get the results for another fortnight yet.

(He also found and biopsed a lesion on her oesophagus during the biopsy - due to acid?)

A friend told me that there are often false negatives with children in these tests.

So I went back to our GP and discussed this with her. Because the disease is hereditary, we decided to test the entire family (Myself, Her Dad and Her two sisters) to determine if there were any other family members that have positive markers for celiac in their blood tests.

My concern is that after reading this forum, it would appear that there are particular tests that really need to be ordered, and even that there are some laboratories that are not able to accurately test the blood for these tests.....

My GP ordered......"Coeliac Serology"

Now I am confused and not sure what to do - again, we wont get any results from these bloods for about a week.....

I am thinking that what I need to do now is request a copy of ALL of the blood tests that have been done for our family and look for myself to see what was tested, and what the results were??

I am sorry to be so long-winded, it is confusing (as I am sure that you have all experienced) to have this so up in the air.

Your thoughts and opinions would be very welcome.

Thanks,

Jenni in Melbourne, Australia.

[Ursa Major]

Hi Jenni, and welcome to these boards. It is highly unusual for a child's iron to be so low. That and her other symptoms sure fit with celiac disease. I hope her GI knew to take at least five biopsies when doing your daughter's endoscopy. It is usually NOT possible to see celiac disease damage with the naked eye, unless it is so severe that all the villi are destroyed! Once the samples are looked at with a microscope will it be clear if the biopsy is positive or negative for celiac disease. So, he is wrong in saying that the biopsy is negative, he won't know that until the results are back from the lab.

You are right in wanting a copy of all the blood test results for the family for yourself. It is wise to have a policy to demand copies of all tests at all times, because doctors often just tell you that 'all results are normal'. I've heard that too many times, and when I looked at them, they weren't normal at all, and at times quite alarming!

What your GP ordered may be just fine, depending on what the lab will understand when they see 'Celiac serology'. Some labs know what they are doing, while others don't. I hope this one does it right.

Your daughter had positive blood work, and she has already had the endoscopy. There is no need to keep her suffering, I advise you to put at least her on the gluten-free diet immediately.

Her iron is so low that just supplementing with iron will not be enough, especially because she is obviously suffering from malabsorption right now, until she heals. It would be a good idea for her to get weekly iron injections until her iron levels stay up where they belong on their own. Iron injections will help boost her energy levels right away, too.

I hope you get the answers you need! But it certainly wouldn't hurt to have the whole family be gluten-free, you might be surprised how many family members will suddenly realize that they had celiac disease symptoms, that go away on the gluten-free diet.

For your daughter I advise you to also eliminate all dairy and soy for at least a few months, as they can hinder healing. Rice milk and almond milk are fine substitutes for milk if she wants it on cereal.

[Rainbow Divas]

Thanks Ursa Major,

You are confirming my instincts.

With regards to her iron blood levels, what does it say to you when they go from 1 to 12 in just two weeks??

Isn't 12 within the normal range?? Would iron injections still be necessary??

The paed put her on iron tabs after the first result and then his nurse told me to have her stop taking them after the second iron results were back.

He also had her on Nexium for the oesophagal lesion, but after only two tabs (one a day) I stopped them after she complained of really bad stabbing pains in one eye.

The drug info states that Nexium is not recommended for under 12 and side effects include headaches.

To be honest, the more I hear, the more confused I get.

Jenni.

[Ursa Major]

I don't think it is possible to go from an iron level of 1 to 12 within two weeks of taking an iron supplement. One of those results must have been an inaccurate reading.

What are the normal ranges for iron for your lab? Because here in Canada the so-called normal range is from 40 to 300 (with 105 being optimal). So, measured by that scale, 12 is still severely deficient. But of course, your ranges might be entirely different.

With two readings that different, it might be wise to have her iron tested again, to find out what it really is.

You might want to try having your daughter eat fairly bland foods (gluten-free of course) so the lesion in the esophagus can heal, and slowly sip at least one cup of chamomile tea a day. Chamomile has great healing properties and might make a difference.

I had an ulcer on the esophagus several years ago, which was caused by reflux, which was undoubtedly caused by celiac disease. It healed on its own.

[Rainbow Divas]

Scarily, that change in iron levels was BEFORE taking any iron tabs.

I was told that the normal range here is from 10.

I am however grateful for your tips, I will certainly try them out.

Thanks,

Jenni.