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Now What?

Guest Nukapai

By Guest Nukapai
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Nukapai
Guest Nukapai
Posted

Ok, so ... the current situation is this:

I've had a number of seemingly unrelated health issues (all kinds of gastro-intestinal problems, chronic catarrh, mild asthma, lactose intolerance, anemia, severe migraines, hair loss, rashes, hormonal problems, weight gain and now recently extremely rapid weight LOSS ...) that seem to have built up over time from when I was a child.

Recently (about two months ago) everything just came to a head and I was signed off sick for two weeks with acute gastro-intestinal problems and severe pain.

Someone suggested I might have Celiac disease, but when my doctor ordered a blood test for it, it came back clear, so he didn't then order an endoscopy or any other tests related to this condition.

He started exploring other avenues and ordered blood test after blood test (I'm changing my name to Pin Cushion Queen!) - until last week, one of them came back abnormal. It was my liver profile result, which showed abnormal levels of Bilirubin in the blood. He said I could have a blockage in my liver, or a severe case of gall stones (I've been in a LOT of pain over the last few weeks).

We are waiting for the local hospital to send me an appointment for an ultrasound.

MEANWHILE, I had the York labs private IgG screening done. I got my results today. In the "foods to avoid/strong IgG reaction" category were ... wheat, gliadin (so oats should be okay still), cow's milk and sunflower seeds.

Huh.

They included a bunch of fact sheets about Celiac, but made sure to mention that their test was NOT a Celiac diagnosis - however, they suggested showing the results to your doctor just in case.

So I'm not quite sure to what length I should now go in avoiding the above substances. I have been very unwell for about 7 weeks or so (I think, somewhere around that mark) that I'd be willing to do pretty much anything to get better again. And if these things are making me sick, I would GLADLY start looking into the gluten-free (and, sadly, wheat-free) diet with a mind to take it on board properly.

Not sure what I should do because there is no official diagnosis and my doc didn't seem interested in that avenue at all ... :blink:

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GEF Explorer
GEF
Posted

In the very least, I'd say you were gluten intolerant. I posted this on the York thread, but you might look into HLA testing if you'd like a definitive answer on whether your intolerance could lead to celiac. It's also important to know that for family history purposes.

If you're negative for celiac after it's all said and done and you want to feel better... then I'd say to try the diet. I'd opt for a diet change over taking a pill for symptoms anyday! If you're intolerant, you'll most likely feel a lot better gluten-free... and in my opinion should be the most important thing.

Gretchen

Guest Nukapai
Guest Nukapai
Posted

Sorry for my ignorance, but what is HLA testing?

I'm going to try the gluten free diet anyway, but I'm wondering about official diagnosis - in order to get it done, I understand you still have to be eating gluten, right? Now that I know it makes me sick, I don't want to eat any at all. An official diagnosis would help for professional reasons and so that I could get free info and support from the UK Coeliac charity organisation. On the OTHER hand, if I don't have Celiac, I might be able to just severely restrict gluten, but not drop it out completely.

GEF Explorer
GEF
Posted

HLA is a gene typing test where they check for the genes DQ2 & DQ8 (researched to be the celiac gene). If you're intolerant and you carry this gene, there is a risk that you could develop celiac (if you haven't already) later in life. If it is negative, you will not develop it, even though you are gluten intolerant and obviously have symptoms.

Gretchen

Guest Nukapai
Guest Nukapai
Posted

Ah, thank you very much! I doubt I would be able to get that test done on the National Health System, so it would be another case of saving up for it...

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