Been waiting 3 months for a consultation / biopsy and have been allocated a telephone call.

[Lornaq]

Hi

I had a blood test around 3 months ago for recurrent tummy problems and a cough, and got a call from the doctor who said my results were consistent with coeliac and I should be seen by a specialist. The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal, but not quite. I am having this telephone call in 2 weeks, but wondered if anyone knew what I might actually have a biopsy, or do you think that as it's nearly 10x higher than normal the consultant might just refer me to a dietician?

Am in the UK, so our wait lists are quite long at the moment. 

Thanks

[trents]

48 minutes ago, Lornaq said:

Hi

I had a blood test around 3 months ago for recurrent tummy problems and a cough, and got a call from the doctor who said my results were consistent with coeliac and I should be seen by a specialist. The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal, but not quite. I am having this telephone call in 2 weeks, but wondered if anyone knew what I might actually have a biopsy, or do you think that as it's nearly 10x higher than normal the consultant might just refer me to a dietician?

Am in the UK, so our wait lists are quite long at the moment. 

Thanks

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo? Are you asking us if we think your physician will order a biopsy or if the results of the blood antibody tests would warrant such? The "what" in your question is unexpected.

You say, "The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal . . ." There are a number of IGA antibody tests that can be run for celiac disease but the most common one is the tTG-IGA. Is this the one you are talking about? When we see just "IgA" we usually understand that to mean total IGA count. But from the numbers you give it looks like it is most likely referring to tTG-IGA. It sounds like you already are aware that in the UK it is common practice to declare an official celiac diagnosis when tTG-IGA is 10x normal or greater. Since your value is technically not quite there it is possible that your physician may want to order a biopsy for confirmation.

What I can tell you is that if it were me I would conclude without hesitation that I had celiac disease if my tTG-IGA values were as high as yours, especially with "tummy problems." One option would be for you to begin the gluten free diet and see if your symptoms improved. But beware if you did that you would need to go back on regular amounts of gluten (defined by the Mayo clinic as daily consumption of an amount of gluten equivalent to two slices of wheat bread) for at least two weeks) if you wish to have a biopsy done in the future.

[Lornaq]

11 hours ago, trents said:

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo?

Yes, apologies. I meant to say does anyone know "if" i will have a biopsy or it they will just refer me to a dietician

[Lornaq]

18 hours ago, trents said:

Welcome to the forum, Lornaq!

You say, "but wondered if anyone knew what I might actually have a biopsy . . . " Not sure what you are asking here. Is there a typo? Are you asking us if we think your physician will order a biopsy or if the results of the blood antibody tests would warrant such? The "what" in your question is unexpected.

You say, "The result was lgA level 146.7 U/mL [<14.9] so almost 10 x higher than normal . . ." There are a number of IGA antibody tests that can be run for celiac disease but the most common one is the tTG-IGA. Is this the one you are talking about?

Yes it was the tTG-lGA

[Scott Adams]

With tTG-IGA numbers close to 10x normal, I think you may want to have the conversation about possibly skipping the biopsy, as in the UK it is now standard practice to do that once level are 10x normal. The article below talks about this change in how celiacs are diagnosed in the UK. I'd wait until you phone call before going gluten-free, as your doctor still may want to do a biopsy, but if your doctor confirms that you don't need one, start a gluten-free diet ASAP.

 

[Lornaq]

15 minutes ago, Scott Adams said:

With tTG-IGA numbers close to 10x normal, I think you may want to have the conversation about possibly skipping the biopsy, as in the UK it is now standard practice to do that once level are 10x normal. The article below talks about this change in how celiacs are diagnosed in the UK. I'd wait until you phone call before going gluten-free, as your doctor still may want to do a biopsy, but if your doctor confirms that you don't need one, start a gluten-free diet ASAP.

 

Thanks  I has read something similar, I wondered if anyone on the forum in the UK had been diagnosed recently without having the biopsy.

[Onegiantcrunchie]

On 2/4/2022 at 6:04 PM, Lornaq said:

Thanks  I has read something similar, I wondered if anyone on the forum in the UK had been diagnosed recently without having the biopsy.

UK here. I "basically" got diagnosed without one about 4 years ago, off the back of 2 positive blood tests. I don't think they made it fully official but they do treat me as a coeliac. My positives were mild though and yours is high, so they might have more certainty with you. I hope they diagnose you without needing you to do a biopsy!

[Russ H]

I think the UK modus operandi is diagnosis via blood test results. Further endoscopy to check for pathology if over the age of 55 or under 55 and symptomatic but negative blood test.