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How Exactly...


andersonfam06

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andersonfam06 Apprentice

do they test for celiac?


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tarnalberry Community Regular

usually doctors start with a blood test, that should include:

total IgA

anti-gliandin IgA

anti-gliandin IgG

tTg

EMA

then, depending on the results from those tests, will usually either say you are definitely not celiac or should have a follow up biopsy of the intestines via endoscopy. some will diagnose on blood test alone, some will suggest a gluten-free trial after the blood test to see how you respond to the diet and diagnose based on that. it's fairly tricky, because the blood tests are not as reliable as we'd like them, though there are no false positives.

why do you ask? (given the section you're posting in, it's worth noting that blood tests in children under 5 are less reliable than blood tests in adults.)

TCA Contributor

My son had 3 endoscopies and 1 sigmoidoscopy in a span of 3 years. celiac disease was never found. His blood work was partially positive, so deemed inconclusive. A dietary trial diagnosed him. I couldn't convince the drs. to test my daughter, but a dietary trial told the story on her too. She had a scope a couple weeks ago for other issues and we haven't heard definite results yet. We did all this testing on my son before I learned how many false negatives there are in kids under 3. I thought I saw on another post that your son had been diagnosed????

andersonfam06 Apprentice

my son has been "diagnosed" from symptoms only, and after no other answers have been found...

lbsteenwyk Explorer

Blood tests for celiac disease in children under 2 years are highly unreliable; your son should still have the full panel, but expect them to be negative or inconclusive. You will probably get a more accurate diagnosis from a duodenal biopsy. I see you have a ped GI appt monday; make sure the GI knows what he's doing - he/she should be geting 4-8 biopsies from the 3rd portion of the duodenum. Children often have patchy damage and the diagnosis can be missed if not enough biopsies are taken.

Children with celiac disease usually have dramatic results on a gluten-free diet - with improvement in 2 weeks, though it may take months to heal completely. I would also suggest a lactose free diet for the first 6 weeks, because celiacs with significant intestinal damage don't digest lactose well. At 9 months, your child should not be getting cow's milk products anyway.

Good luck in finding answers and relief for your son

andersonfam06 Apprentice

he is on a lactose free formula right now. neither of my boys can handle any milk based formula except lactose free. my 3 year old still does a lot better on lactaid, but does okay with real milk.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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