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Could this be Celiac disease?


Chissers

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Chissers Newbie

Could this be Celiac disease? I am a 60 YO male awaiting a biopsy in 4 weeks so eating gluten at present. 

18 months of abdominal discomfort especially left upper quadrant, and altered sensation about left mid back, more gas at both ends, softer and more frequent motions and smelly farts but no steatorrhoea. No nausea or vomiting. Weight steady.

Some brain fog, and occasional ataxia, and altered sensation about fingers. Occasional bluish tinge to nails though 02 saturation normal, and no breathlessness etc. Mother and sister have celiac. Symptoms not better off gluten, but worse when resume it or have any alcohol.

Investigations:   TTGs x 3 negative. (No total IgA ever done). Lipase but not amylase mildly elevated when worse but only 1.5-2 x ULN. Blood count, liver function tests normal. CRP normal. Faecal elastase normal x2. CT and MRI scans about organs all normal including pancreas. Endoscopy and endoscopic ultrasound show normal pancreas over 18 months. Hydrogen breath test normal. Hp negative. Colonoscopy normal. HLA DQ2 positive.

Thank you in advance.

 


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Scott Adams Grand Master

At 60, with a family history of celiac disease (mother and sister) and HLA DQ2 positivity, celiac disease is a possibility despite negative tTG antibodies (total IgA was not checked). Your symptoms—abdominal discomfort, gas, brain fog, ataxia, and worsening with gluten or alcohol—could align with celiac disease, though the lack of improvement off gluten is atypical. Normal imaging and fecal elastase reduce the likelihood of pancreatic issues, and a normal hydrogen breath test makes SIBO less likely. The upcoming biopsy will be key for diagnosis; continue eating gluten until then. If celiac disease is ruled out, consider non-celiac gluten sensitivity or a neurological evaluation for symptoms like ataxia and finger numbness.

Chissers Newbie

Thank you for your prompt reply. Have others experienced LUQ and L sided back pain when on gluten? Could gluten be irritating the pancreas to cause the slight rise in lipase?

Scott Adams Grand Master

Given the nefarious nature of celiac disease and how it strips nutrients from your body, I believe we've seen virtually every type of abdominal pain here described as a symptom. In my case it was mostly in my lower right quadrant. While gluten intolerance or celiac disease primarily affects the digestive system, it can sometimes cause referred pain in areas like the left upper quadrant or back due to inflammation or irritation in the gut. However, left-sided pain and elevated lipase levels could also indicate other conditions, such as pancreatic issues, which should be evaluated by a healthcare professional. Gluten itself is not typically known to directly irritate the pancreas, but if you suspect a connection, it’s worth discussing with your doctor. They may recommend further testing, such as imaging or additional blood work, to rule out other causes. Others in gluten-sensitive communities have occasionally reported similar symptoms, but individual experiences can vary widely. Keeping a detailed food and symptom diary might help identify patterns.

Chissers Newbie

Thank you Scott

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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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