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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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      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
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      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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