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My doctor suspects Coeliac Disease ?

jonniecheesecake

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jonniecheesecake Newbie
jonniecheesecake
Posted

My doctor thinks i might have coeliac disease, but i hope not, the thought of not being allowed to eat all the things i love to eat for the rest of my days is daunting! Changes to social life, eating out, bbq's and the all the other joys of life would be immense!

I have had two blood tests done for celiac disease, the first one came back as 7.2 u/ml    (normal range 0.0 - 6.9 u/ml)

The second one which was taken about a month later came back as 22.0 u/ml

What do these results generally suggest?   I am a 47 year old UK male. 13 stone. 6ft tall.

I'm booked into see the gut specialist next month and to get a biopsy done.

My symptoms which have been going on for about 8 months now include bouts of diarrhea, slight upper stomach aches, fatigue/weak feeling joints in lower body like legs, knees, hips and feet, tingling/burning/stinging feeling in buttock area and backs of legs. slight pins and needles in fingers and toes, slight bloating, small patchy rashes/dry skin that come and go.

All of my symptoms are never really that bad, but they all just come and go and are a bit uncomfortable, sometimes they do get worse, but it doesn't stop me getting on with my daily life. Just want to get to the bottom of what could be wrong.

When i eat breads, cakes & cereals (which i do a lot) i don't really notice that it makes my symptoms any worse, so can this be down to gluten?

Any advice much appreciated.

Regards J.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

I am not a doctor, but with your test results you should continue to go forward in the diagnostic process.  

My main symptom was anemia and I didn't even have gut issues at all!  People with celiac disease can present in many ways.  My blood test was mildly positive yet my biopsy (via endoscopy) revealed moderate to severe intestinal damage.

I would spent time learning about celiac disease and make sure you do not start the gluten free diet before all testing is complete.  This is critical in getting an accurate diagnosis.  

Learn more:

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Sugarcube Rookie
Sugarcube
Posted

It sounds like you have just had the ttg blood test. 

Hopefully when you are seen by the gut specialist/GI he will run the full celiac panel as well as the celiac gene test. 

Your intial results are potentially suggestive  of celiac, but ttg can be falsely postive particularly if you have other auto immunte / gi issues. 

jonniecheesecake Newbie
jonniecheesecake
Posted
  • Author

Yes Sugarcube, i think i had a blood test called TTG IGA ANTIBODY

So what does that actually mean?   Why didn't they do a full celiac panel? or is that the next step, but my doctor didn't mention it.

I'm just gonna keep eating as normal up to the biopsy, so i get the correct diagnosis.

 

cyclinglady Grand Master
cyclinglady
Posted
5 minutes ago, jonniecheesecake said:

Yes Sugarcube, i think i had a blood test called TTG IGA ANTIBODY

So what does that actually mean?   Why didn't they do a full celiac panel? or is that the next step, but my doctor didn't mention it.

I'm just gonna keep eating as normal up to the biopsy, so i get the correct diagnosis.

 

Money.  It costs more to run a celiac panel.  For years the TTG has been the recommended screening test for celiac disease.  It catches most, but not all celiacs.  It's a pretty good test, but no test is perfect.  You are going forward with the endoscopy.  Make sure your GI takes 4 to 6 tissue samples (biopsy) because just a "visual" often looks fine (visually I was fine, biopsies revealed a Marsh Stage IIIB).  

So, keep eating gluten.  My advice is to eat all your old favorite things.....it might be your last chance!  

The good news is that you are getting closer to getting a diagnosis which will result in improved health (if you go gluten free).  

Sugarcube Rookie
Sugarcube
Posted

Several conditions other than Celiac, can elevate ttg readings including autoimmune diseases, a parasitic disease/infection etc. Also for some patients the ttg can be a false positive. Which is why I think its helpful to have the full panel, to make an interpretation. 

Your GI/Gut specialistic can run the full panel on the NHS.  Which is what they did for me before the biopsy. 

 

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