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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


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  • Recent Activity

    1. - trents replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - dsfraley replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

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      Diagnosed Marsh stage 3C in January 2026

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    • trents
      Lactose intolerance is not necessarily to problem in the celiac community. Intolerance to the dairy protein casein can be the culprit as it is similar enough to gluten to cause cross reactivity in a fairly significant element of the celiac population. Oats and dairy are common cross reactors in the celiac community. Eggs, corn and soy are also common cross reactors but oats and dairy are the two big ones.
    • knitty kitty
      Thought I'd leave you the references: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ "The early symptoms of TD are non-specific and may be easily attributed to any number of disease processes. Unrelenting or uncharacteristic fatigue, changes in mood with a tendency towards hyper-irritability and mood lability are common [4]. A sense of mental fuzziness and subtle decrements in memory are often reported, along with loss of appetite, sleep disturbances and/or gastrointestinal (GI) discomfort and dysmotility. Food intolerances and vomiting may develop as the deficiency progresses. Experimental [5] and case literature [6] suggest GI discomfort and dysmotility may be more prevalent early indications of TD than currently appreciated. A form of GI beriberi has been identified but is under-recognized [7]." and... Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/  
    • dsfraley
      Thank you for these thoughts, Knitty. Trents: Yes. I would say we are taking it relatively light on his belly because it's been upset, so no heavy/excessive dairy, but he has had some cheese here and there. Not high quantities, however, and tests were negative for lactose intolerance.
    • trents
    • knitty kitty
      Being low in Thiamine B1 can cause fingers and toes to be cold all the time.  Thiamine deficiency affects body temperature regulation and sleep/wake cycles.   Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
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