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Dd Doesn't Have An Absorption Problem,


ptkds

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ptkds Community Regular

I posted about 3 wks ago about my dd that possibly had a vitamin K deficiency. Her blood isn't clotting fast enough. she has bruises all over her legs (and recenlty they are showing up on her arms) and her gums sometimes bleed.

The hematologist is ordering another very special blood test to check out her platelets. We have to drive nearly 2 hrs away for a 9am appt. on Monday to do this blood work. It can only be done in the AM. She hasn't really told us yet what she is looking for, but the Vit. K defeciency has been ruled out. She doesn't think that it is a bleeding disorder because my dd has had ear tubes put in twice and her adenoids removed without any problems.

Please pray for my little girl! I am so worried about her. And she HATES blood draws, and every time we go in, they have to do another blood draw. She just screams and begs for a bandaid. She turns 3 on Friday. She is too young to understand why we have to keep taking her to this dr that keeps hurting her. Please just keep her in your thoughts.


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fedora Enthusiast

I will pray for her, and you. I know how hard it is to watch our children suffer. I am 32 and I HATE needles(it is the reason I did not attempt to get a formal diagnosis).

Good luck, I hope you find out what is going on and that it is easily fixable.

hez Enthusiast

My heart and my prayers go out to you, your daughter and your family.

Hez

mcs1984 Apprentice

My heart, thoughts and prayers go out to you and your family.

My son is four and does not understand why they are doing xrays and has to have his blood drawed and on June 19th has to go though a complete clean out and will not be able to eat after 5:00 June 18th. He is having a GI scope done on the 20th.

Anyways i understand and i wish you all well.

maria

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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.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • 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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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