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Doctor Won

analop

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analop Newbie
analop
Posted

Hi, this is my first post and I would like an opinion.

I took my just turned 5 year old daughter to the pediatrician because I feel that she has been run down for a while ...weighs 15 kg...is pale...often tired...never wants to eat really....and recently complains of tummy aches.

She has not had diarreah or vomits actually she gets quite constipated.

Turns out about a year ago she had a blood test cos she was also run down and i recall she had vomits aswell. well in that blood test which showed she was a bit anemic, they tested her antitranglutaminase and the doc said it was negative...and now she won

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Ridgewalker Contributor
Ridgewalker
Posted
When I mentioned Celiac. her face dropped and she said"she can
analop Newbie
analop
Posted
  • Author
:angry: Grrrr, hearing that really irritates me. Of course something that didn't show up before can show up a year later! Besides, Celiac blood tests are notoriously unreliable in small children.

You're right, constipation is absolutely a symptom of Celiac. And 15 kilos- that's about 30 pounds, right?- is awfully small for a 5 year old. The anemia, low appetite, fatigue, tummy aches, paleness- they're all signs of possible Celiac. Does she get dark circles under her eyes, even when she's had a good night's sleep?

If your doc refuses to test for Celiac (and you need to make sure they run a full Celiac panel, not just one or two of the tests), then you have 3 choices:

- Find a new doc.

- Do stool testing through a lab that doesn't require doctor's orders (Such as Enterolab, and I think there are a couple more as well.)

- Simply put her on a gluten-free diet and see if she gets better. If she does, then you really have your answer.

A gluten-free diet is tricky at first, but it gets easier with time. There's a ton of good info on here about doing it, if that's what you decide to do.

Note that even if you do the diet, and she starts feeling better, she may still have a fear of using the bathroom- because it has hurt and has been difficult in the past. This can take time to get over, for some kids.

analop Newbie
analop
Posted
  • Author

sorry hit wrong button there..

Right !! Ok . now I can go back in there and request her to include the celiac tests in her upcoming bloodtest.. you see I cancelled the blood test that should have been done last Friday cos I thought she was talking "nonsense"... and as I found out she was on holiday now all of Nov I will now be seen by a replacement doctor who I will try to get to include the tests, I have made a list of symptoms as to not forget any and also that her cousins have PKU ... may be slightly related through the fathers being brothers.... I don

nora-n Rookie
nora-n
Posted

Spain, I live in Norway and all Norwegian IP addresses have free access the the bmj, the british medical journal. Same may apply for spain. In it there are some good articles about celiac, and i remember there is one that says that it may take years for antibodies to become positive and some times they never get positive.

You find the articles in other gasterontology or what they call it. If you do not have access, you can probably go to the local university and access the articles there, or find the references and copy from the paper issues.

The bmj also says to keep a high amount of suspicion of celiac and to repeat tests. The latest article mentions that 5 or 10 % do not have positive antibodies ever.

nora

disneyfan Apprentice
disneyfan
Posted

I have two suggestions:

- Find a new doctor that will listen to you. A year is a long time and results could change. She may have only had her celiac triggered at that time and now it may show up in tests.

- If no response from dr, then try her on a gluten free diet and see how she feels.

I have not had a firm diagnosis but did have two blood tests come back positive. I did not have the biopsy but went gluten free on my own. The dr I saw told me that I had psychologically convinced myself that the foods I cut out were bad for me. Never went back to him! Follow your instincts.

analop Newbie
analop
Posted
  • Author

Thanks guys for getting back to me..

Today I had a new appt with the replacement doctor, she was nice enough but it was a waste of time really .. being a stand-in doc she said that she could not include the celiac blood tests if my childs Pedi had not originally requested them.

I mentioned that the reason the Pedi had given me as to why she wouldn

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Carol the Dabbler Apprentice
Carol the Dabbler
Posted

Wish I could recall where I read this (I've been reading so many different celiac sites lately), but it was a reputable site, and they said that less than half of all celiacs have diarrhea as a symptom. "They" used to think that all celiacs have diarrhea, but that was back when "they" thought that only about 1 in 5,000 people are celiacs. Then just a few years ago, someone actually checked a random group of people, and 1 in 133 were celiacs -- most of whom did *not* have the previously-recognized symptoms. So that doctor is just a few years behind the times -- not surprising in a regular family doctor.

One thing you might try is a celiac DNA test. There are two kinds, a blood test (which requires an open-minded doctor), and a cheek-swab test that you can do yourself and mail in. I believe the swabs are supposed to be sent to the lab by overnight courier or something, so you'd have to check into what's available to you there in Spain. But at least you could find out whether it's *possible* that your daughter's a celiac.

I'm aware of two labs that do the cheek-swab celiac DNA test: Kimball (which is recommended by the University of Chicago's celiac center) and Enterolab (which is considerably cheaper). That's about all I know -- others may be able to add more.

analop Newbie
analop
Posted
  • Author

Hi there,

Funnily enough today I bought a magazine--(cos it came with a free bag you see...........) Anyway one little article caught my atencion it said: Test for Celiacs : Biocard Celiac Test, the first quick self diagnose test to detect the celiac illness. With a drop of blood from a finger tip the results appear in less than 5 mins

I couldn

analop Newbie
analop
Posted
  • Author

Hi again,

Well I bought the Biocard Celiac Test kit from the chemist. It came out Negative. It tests IgA antibodies (translation from Spanish).

I guess I thought it would be useful if it screamed out a Positive result for high levels of IgA but anyway now I will wait until Tuesday that my little one has her regular blood tests ans see what they show.....sigh... or I may just try and find a private lab to do the tests....

She is still quite constipated though and I am dreading the moment...double sigh!!!

Been reading loads of stuff about the condition and peoples experiences which really helps.

Hope to have some news soon.

Bye for now

nora-n Rookie
nora-n
Posted

The celiac tesit is probably the same as we have here in scansinavia and UK, the ttg2-test invented by matti M

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