What to eat

[Scott Adams]

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[soellis]

The anemia -> malabsorption is what began my health ordeal so it’s consistently monitored. I had 2 rounds of iron iv between 2021 and 2022, last round completed about a month before diagnosis. B12 shots were given prior to diagnosis and when I supplement any Bs they go way too high. I now take 2 drops of pure encapsulations b12 a day so pretty negligible compared to recommended dose. I have pushed for full b vitamin panel multiple times and it seems I’ve been tested for everything but thiamine. I’ll try to get that checked tomorrow before supplementing but thanks for the direction! Sounds like this is the bit I was missing explicitly connecting celiac to probable TAI (still waiting on follow up testing to differentiate SAI from TAI). 
 

Unfortunately, I’m still left with the ultra sensitive celiac / persistent malabsorption that led me to a probable thiamine deficiency (and permanent brain damage weee). Up until phase 1 of the Fasano diet a couple weeks back, my diet was very high in pork and other red meats so there was no shortage of thiamine consumption. 

I use ferritin loss as a proxy for malabsorption rate since it was very high when diagnosed from the iv. It was stable the first few months of gluten-free despite neuro symptoms getting worse, and when I would have been eating oats and my 1 known slip up (small unreal nougat bar). My small intestines are healing well but TTG remains out of range and ferritin/b12 loss keeps accelerating. Besides a few remaining tests to officially eliminate the pancreas, we have excluded all other GI malabsorption causes

[soellis]

Thank you for the casein link! Unfortunately, I learned the hard way 3 weeks ago lol. I had a very intense neuro reaction with no GI symptoms. My prior reaction (sunflower oil***) was stronger and more GI/neuro mixed. And then today’s reaction was mostly GI and only a bit neuro, and the weakest of the three

[knitty kitty]

@soellis,

Ask for an Erythrocyte Transketolase test to test for Thiamine deficiency.  It's more accurate than a blood test for Thiamine.

The bloodstream is a transportation method.  Vitamins absorbed from foods or supplements go into the bloodstream and can circulate for at least a couple of days before being absorbed by cells in organs and tissues.  So, of course, a blood test would reflect high levels if you've been supplementing in the previous eight to twelve weeks.  Most of the B vitamins cannot be stored for longer than eight to twelve weeks.  You need to be off vitamin supplements for eight to twelve weeks before testing for deficiencies.  But, again, blood tests do not reflect the stores inside cells in tissues where the B vitamins are actually utilized.  The body will rob tissues of their vitamin stores and put them in the bloodstream to supply important organs like the brain and heart.  

More than B12 and iron are needed to correct anemia.  Riboflavin B2, Pyridoxine B6, Folate B9, and Thiamine B1.  All the B vitamins are water soluble and easily lost.  It's rare to be deficient in just one B vitamin.  The eight B vitamins all need each other work properly.  We need to supply all eight B vitamins every day.  You can be eating nutritionally dense food sources, but if you are not digesting the food and absorbing the nutrients, they can't be much use.  

We also need B vitamins to make and secrete digestive enzymes.  Digestive enzymes are needed to break down fats and oils.  

Many of the eight essential B vitamins can cause neuro symptoms when deficient.  

Thiamine deficiency needs to be corrected as quickly as possible with high dose Thiamine.  This can be administered by IV or by supplementing with over the counter Thiamine Hydrochloride, Allithiamine (Tetrahydrofurfuryl Disulfide TTFD), and Benfotiamine.  Read my blog about my journey with Thiamine deficiency and permanent brain damage.  

Keep us posted on your progress!