-
You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease33Pain in the right side of abdomen
@Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas). Electrolytes may become unbalanced, so monitoring is needed as well. Just to rule out Thiamine deficiency... -
- Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease71 Year Elimination Diet journey
I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix... -
- xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease71 Year Elimination Diet journey
What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs -
- Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
1 Year Elimination Diet journey
I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but... -
- Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
1 Year Elimination Diet journey
I like the Wolff's brand coarse kasha in the grocery store, but I also like the Azure Standard products (AzureStandard.com) for buckwheat, amaranth and other ingredients. The Wolff's package in my pantry is labeled "gluten free". Azure says that their packaging plant has an allergen control program but almost none of their products are labeled gluten...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Celiac.com Sponsor (A22):
-
Forum Statistics
-
Total Topics121.7k
-
Total Posts1m
-
-
Celiac.com Sponsor (A21):
-
Who's Online (See full list)
-
Upcoming Events
-
0May 06, 2026 11:00 PM
Until
May 07, 2026 12:00 AM
-
0May 07, 2026 11:00 PM
Until
May 08, 2026 12:00 AM
-
0May 12, 2026 10:30 PM
Until 11:30 PM
-
Posts
-
By knitty kitty · Posted
@Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas). Electrolytes may become unbalanced, so monitoring is needed as well. Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days. If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency. White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy. Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes. The damage becomes permanent if not corrected quickly. Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following. Doctors are not trained in Nutrition. Doctors are taught Wernickes Encephalopathy only happens in Alcoholism. My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol. If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes. Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly. It's rare to have a deficiency in just one vitamin. B12 Deficiency and Thiamine deficiency go hand in hand. I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time. They laughed when I asked to be checked for Celiac Disease. I was overweight (high calorie malnutrition). I didn't match their " in the box" thinking. I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease. My doctors wrote me off as "depressed". I could feel myself dying. I trusted what I learned at university about how vitamins work inside the body. I recognized the symptoms of Wernickes and other nutritional deficiency diseases. At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes. I continued supplementing for months, with thiamine and B vitamins and electrolytes. I continued to have health improvements. I did suffer some permanent brain damage. I have permanent vision problems and optic nerve damage. Computer screens cause migraines. I struggle through them to help others. Ask for Thiamine and an Erythrocyte Transketolace Activity Assay. This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done. The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage. Trying thiamine hydrochloride is simple and cheap and safe and nontoxic. If high dose thiamine doesn't work, there's no harm done. Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear. -
By Aretaeus Cappadocia · Posted
I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though. -
By xxnonamexx · Posted
What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs -
By Aretaeus Cappadocia · Posted
I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response. -
By Aretaeus Cappadocia · Posted
I like the Wolff's brand coarse kasha in the grocery store, but I also like the Azure Standard products (AzureStandard.com) for buckwheat, amaranth and other ingredients. The Wolff's package in my pantry is labeled "gluten free". Azure says that their packaging plant has an allergen control program but almost none of their products are labeled gluten free. I have been relying on Azure a lot for my gluten-free diet and the global outcome has been good but I never know for sure for any given product. I eat something I bought from them pretty much every day. (wish I could tell you something more definitive) Full transparency: I was diagnosed with celiac by antibody test (10x the threshold) and by biopsy, and now my antibody levels are 1/10 of the threshold, so my diet appears to be very gluten safe. However, I never had any clear acute symptoms so I never know for sure when I'm consuming gluten.
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.