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Ellawells

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Ellawells Apprentice

Hi, Iā€™m after some advice so obviously this is the best place 

I got my official diagnosis around a month ago, since then I have (I think) been gluten free completely, I feel amazing right now šŸ˜Š and I had no obvious symptoms in the first place but I must of without knowing.

Anyway my doctors referred me back to the specialist clinic, I have my appointment tomorrow and at a loss as to what questions I should be asking, Iā€™m not sure what the consultant will say other than dont eat gluten, any advice or ideas as feel this is a real opportunity to talk to a specialist 

thank you for taking the time to read this and any help would be amazing, thanks 


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RMJ Mentor

Here are some ideas:

When should I have follow up celiac blood tests.

Should I be tested for nutrient deficiencies.

Should I have a bone density test.

How long might it take for my gut to heal enough to take care of my anemia.

 

 

Ellawells Apprentice

Thank you for replying, Iā€™m currently waiting for my bone scan and dietitian appointment, they are in a couple of weeks.

Everything was increased on my biopsy results, I would like my marsh scale confirmed and a full nutrient test as well. Iā€™ll ask about those, I suppose they will just go over the damage i have and give me a stern talking to about not eating gluten and being careful in the future.

thanks again 

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    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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