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Recent Activity
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- dsfraley replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease39 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
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.- 1
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- trents replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease39 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
Is your son still consuming dairy? -
- knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff14Diagnosed Marsh stage 3C in January 2026
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/ -
- knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Nateral remedies
I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm... -
- knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease3
9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi. I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist. It's not in ones head. Thiamine deficiency covers all the symptoms you've mentioned. With such a high Marsh score, correction of nutritional...
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Posts
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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.
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Is your son still consuming dairy?
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By knitty kitty · Posted
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/ -
By knitty kitty · Posted
I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm.nih.gov/41234257/ Have you been checked for nutritional deficiencies? Vitamins are all natural. They are found in food. With Celiac disease, we may not absorb sufficient quantities needed. We cannot make vitamins, so we need to get them from foods and supplements while we're healing. Have you been checked for nutritional deficiencies? Ask for a Erythrocyte Transketolace Activity Assay. One of my favorite vitamins is Thiamine in the form Benfotiamine. It has really improved my gastrointestinal health. I took Benfotiamine to help get rid of my SIBO. Thiamine (Benfotiamine) help keep the SIBO under control. Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ -
By knitty kitty · Posted
Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi. I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist. It's not in ones head. Thiamine deficiency covers all the symptoms you've mentioned. With such a high Marsh score, correction of nutritional deficiencies is extremely important. Thiamine deficiency is the first to manifest because thiamine stores run out quicker than other vitamins. Ask your doctor for an Erythrocyte Transketolace Activity Assay as soon as possible! Gastrointestinal Beriberi is under recognized by doctors. Thiamine can be administered by doctors by IV. Thiamine is safe and nontoxic even in high doses needed to correct thiamine deficiency and gastrointestinal Beriberi. Because thiamine is safe, there is no harm in trying Thiamine if only to rule Thiamine deficiency out. Correction as soon as possible is important as symptoms can increase in severity and become life threatening.
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