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Is Dr On The Right Track?

Peta

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Peta Explorer
Peta
Posted

Hi,

I would really appreciate any opinions on this.

My son is 15 years old. He is 6'2" but only 60kgs... he is very thin but eats plenty.

HISTORY: We suspected Celiac a few years ago. In 2003 the doctor ran a gene test for HLA-DQ2 (DQA1*05/DQB1*02) or DQ8 (DQA1*0301/DQB1*0302. It came back all positive for all four. Considering his symptoms (nausea, weight loss, low iron etc) the doctor sent my son for biopsy, even though the serum test showed negative for Celiac. The specialist at the hospital said that because the serological test for celiac was negative they would not perform a bowel biopsy.End of story.

NOW: Recently (2011) I took my son back to another doctor because he had been unwell (random vomiting, lethargy, dizziness) and the doctor ran blood test... his iron levels came back VERY low. This doctor has also requested a bowel biopsy after strong symptoms, a strong positive gene test and VERY low iron showing malabsorption. My sister and nephew are diagnosed Celiacs so there is a family link.

My question is... considering both times the serological test has come back showing negative results for celiac do you think that the Dr should be looking for other reasons for his extremely low iron levels/weight loss? How common is it for someone to be celiac and not show up in the Celiac blood test? I am just hoping that the biopsy is done this time.

Sorry for rambling(but, believe it or not, I tried to shorten it) but I just wanted some opinions.

Regards,

Deidre

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beebs Enthusiast
beebs
Posted

Nope - blood test showing false negatives are common. I would absolutely suspect coeliac first in your sons case - especially with your family history.

In fact my kids Paed GI told me today that he had a teenage patient who was negative on the bloods and then negative on the endo biopsy. He was still sick and losing weight and eventually they got him to swallow a capsule camera that takes images further down where they can't scope and lo and behold - coeliac!

Make sure they do an endoscopy with 8 biopsies - for some reason some drs only take 3 samples which is not enough.

Skylark Collaborator
Skylark
Posted

My question is... considering both times the serological test has come back showing negative results for celiac do you think that the Dr should be looking for other reasons for his extremely low iron levels/weight loss? How common is it for someone to be celiac and not show up in the Celiac blood test? I am just hoping that the biopsy is done this time.

One in four celiacs comes up negative on the blood tests. It really sounds like you need to start your son on the gluten-free diet and see if it helps his symptoms.

Peta Explorer
Peta
Posted
  • Author

Thank you for your replies. I didn't realise that false negative results were so common?

Thanks for the advice about asking for extra samples when they do the biopsy. I will certainly ask for that.

I won't trial a gluten free diet as I want the biopsy done first. The Gluten-free diet is so restrictive that I don't want to just 'presume' he's Celiac in case it may be something else all together.

My sister and nephew are very sensitive celiacs and eating anywhere outside the safety of their homes is almost impossible. They seem to get 'glutened' everytime they eat out... through cross contimination or people just not reading the ingredients. Even hospitals are guilty of 'accidentally' providing foods and medications containing gluten (even when they are aware they are Celiacs).

I am certainly not looking forward to it, if my son is Celiac... but I will be doing my utmost to ensure that he is totally gluten free (and well fed) at home if he is diagnosed.

Thanks again.

Skylark Collaborator
Skylark
Posted

If you do not start him on the gluten-free diet no matter the biopsy results, you are missing out on an opportunity to heal him. Doctors miss non-celiac gluten intolerance all the time; most are not even aware it exists. Sure the diet is hard, but it has a pretty high chance of working given his genetics, his extremely celiac-looking symptoms, and your family history. The good news is that if he's biopsy-negative he may not be as terribly sensitive to CC.

beebs Enthusiast
beebs
Posted

I personally think he should have the biopsy first. I didn't and went gluten free with the intention of doing a gluten challenge later - now my symptoms are so severe when I ingest gluten that I end up in emergency. So I am in diagosis limbo - I just wish I had done it earlier.

Peta Explorer
Peta
Posted
  • Author

Thank you. I respect all opinions.

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Skylark Collaborator
Skylark
Posted

I personally think he should have the biopsy first. I didn't and went gluten free with the intention of doing a gluten challenge later - now my symptoms are so severe when I ingest gluten that I end up in emergency. So I am in diagosis limbo - I just wish I had done it earlier.

I didn't realized there was any question of starting the diet before the biopsy. I agree that's a bad idea. My point was to trial the diet no matter what the biopsy results are.

I am in diagnosis limbo as well. I figured out my gluten sensitivity on my own quite a few years ago. It was well before celiac was all over the news. I had no idea I couldn't be tested without challenging until I'd been gluten-free for four months. I considered challenging but the first French bread sandwich I ate was so unpleasant that I abandoned the idea.

beebs Enthusiast
beebs
Posted

I didn't realized there was any question of starting the diet before the biopsy. I agree that's a bad idea. My point was to trial the diet no matter what the biopsy results are.

I am in diagnosis limbo as well. I figured out my gluten sensitivity on my own quite a few years ago. It was well before celiac was all over the news. I had no idea I couldn't be tested without challenging until I'd been gluten-free for four months. I considered challenging but the first French bread sandwich I ate was so unpleasant that I abandoned the idea.

Ohh sorry!! I misread! Maybe this new way of testing (Gliadin straight on to biopsy) will help us one day!!

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