Chronic brain fog and fatigue with eating ANY food.

[Ashleysue]

Hello,

I am 3 months into a gluten free diet the first two months my energy was high, Pelvic pain was gone and my systemic inflammation disappeared. Over the past month I had brain fog when having dairy so my nutritionist recommended cutting it out as well as gluten-free oats. Long story short l, now I have brain fog that is absolutely debilitating within 10 minutes of eating any food even in small amounts and builds over an hour where it feels like I’m almost intoxicated. I can no longer work, can’t drive after I’ve eaten food and sometimes my body will be so exhausted after eating something as small as three bites of unseasoned, ground turkey that I have to sleep for four or five hours.
 

-I am not anemic, my vitamin d is fine, blood panels and cbc are good but it’s almost like my body can’t handle digesting food. Only time I can work is when I fast and eat zero food which doesn’t help because I work 16 hour shifts. My symptoms are trigger by all food, I tried plain rice, I tried a bite of strawberries, arugula, gluten-free, dairy free, Frutose free and a low fodmap diet. I have zero vili left and was diagnosed with stage 3C celiac disease in May, 2024. I was reading online about pancreatic enzymes and a condition called EPI. (exocrine pancreatic insufficiency (EPI). People with EPI don’t have enough pancreatic (digestive) enzymes to break down foods and absorb nutrients.) it’s common in 30 percent of people with celiac disease. Could that be it? Anyone have any tips or ideas?

-Side note I’m suppose to have a major spine surgery in 5 days. My nutritionist and primary doctor cleared me because my labs are good and all I have is debilitating brain fog, and chronic exhaustion only when consuming food. Would it be dangerous to still have surgery early in celiac recovery?
-Please throw your thoughts and suggestions out there. I need help brainstorming, it feels so isolating and lonely. Ps is it possible to get disability or can someone tell me how to start the process? I can’t keep fasting for 18 hours a day just to work. Thank you!

[knitty kitty]

Hello, @Ashleysue,

Have your doctors checked you for nutritional deficiencies beyond Vitamin D?  Celiac Disease causes malabsorption of all the nutrients, vitamins and minerals, that our bodies need to function properly.  With such severe damage as Marsh 3 C, there's no doubt you've developed nutritional deficiencies.  

Vitamin D can be stored in the liver, so it can take a long time to be depleted.  Levels of Vitamin D below 70 nmol/L are not sufficient for us.  

Vitamin D levels do not reflect deficiencies in other vitamins, like the eight essential B vitamins, especially Thiamine B1.  

There's eight essential B vitamins.  Our bodies cannot make them, so we must absorb them from our food.  Our health suffers without them.  Without villi, you most surely are not absorbing sufficient B vitamins.  Are you taking any nutritional drinks or vitamin supplements?  Have you consulted a nutritionist?

Doctors are not sufficiently educated in malnutrition in Celiac Disease.  They don't see the connection between vitamin deficiencies and health problems.  They think vitamins are old school and unimportant.  Doctors prefer prescribing pharmaceuticals from which they can earn money.  Vitamins cannot be patented, so addressing nutritional deficiencies and prescribing vitamins is not lucrative. 

We run out of Thiamine first because it is able to be stored for the shortest time.  We can become depleted in three to twenty-one days.  The Gluten Free diet is low in Thiamine and the rest of the B vitamins.  Gluten Free processed facsimile foods are not enriched nor fortified with vitamins like their gluten containing counterparts.  

The pancreas, brain and thyroid use more Thiamin Vitamin B 1 than any other organs in the body.  Thiamine is needed to make and secrete pancreatic enzymes and insulin.  

 "Pancreatic acinar cells are responsive to thiamine deficiency, dramatically decreasing the secretion of digestive enzymes."

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Thiamine deficiency disorders can affect brain function and causes extreme exhaustion.  Thiamine deficiency symptoms can get worse after eating when a greater demand for Thiamine increases with digestion or activity.  Your having to sleep for hours after eating is the body's way of saving what little thiamine it has left.  

Nitrogen compounds in anesthesia can affect Cobalamine Vitamin B12 levels, causing them to drop immediately and for several weeks afterwards.  Heart palpitations and heart rate, (including heart failure) may result.  

I've experienced thiamine deficiency disorders and other vitamin and mineral deficiencies caused by malabsorption due to Celiac Disease.  My doctors were clueless.  My education in nutrition and microbiology lead me to the answers.  

Doctors can intravenously administer high dose Thiamine if a deficiency is suspected.  There should be improvement within minutes to hours if thiamine is deficient.  Thiamine is safe in high doses and nontoxic, so there's no harm in trying it, if nothing else but to rule it out.  My doctors refused to do this so I took high doses of over-the-counter thiamine supplements (Benfotiamine and Allithiamine) at home.  I had improvement within minutes.

I'm terrified at the thought of you undergoing surgery in such a state of vitamin deficiency.  Please postpone surgery until your nutritional deficiencies are investigated more thoroughly.

[Scott Adams]

Has your diet been 100% gluten-free since your diagnosis, or is it possible that you are still getting gluten in it?

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Wheatwacked]

Please do delay the surgery on your back.

On 8/25/2024 at 12:21 PM, Ashleysue said:

I’m suppose to have a major spine surgery in 5 days.

All of my back pains went away on GFD and vitamins.  

About 25% of back surgery patients need repeat surgery.  There are many nutrients, as @knitty kitty mentioned that can contribute to pain.

Celiac Disease causes malabsorption, over time leading to malnutrition. 

On 8/25/2024 at 12:21 PM, Ashleysue said:

Only time I can work is when I fast and eat zero food which doesn’t help because I work 16 hour shifts.

I also have no energy after eating.  My current theory is that any carbs I eat are converted to Glycogen and my body stores it as belly fat instead of using it.  Since converting to this my Triglycerides and cholesteral have dropped 100 points in my last blood test.  I expect more in my next test in October.  Glucose goes straight to the blood and to the cells. Carbs and Sugars like fructose have to be processed by the liver. 

During the day I get my energy from Red Bull.  It is sugar water, supplies my dietary needs of B3, B5, B12, magnesium (all required to process glucose to ATP), Taurine is an essential antioxidant that that breaks down the ROS oxidants created as a biproduct of the Krebbs Cycle.  We make some, but like Choline (eggs, beef) not enough for the western diet.

So, on waking I take 10,000 IU vitamin D, 250 mg Thiamine (B1), and a Red Bull (250 ml).  I seem to need about 2 tablespoons of sugar an hour.  Sometimes black coffee or espresso with sugar instead but on average about 660+ calories from Red Bull and sugar.  Evenings are spent eating proteins, fats and carbs that don't irritate my gut and I generally fall asleep soon after.  Our stomachs do not need to be constantly full. That is Toxic Hunger.  Some say that toxic hunger can be a major factor that leads to overeating and obesity.  Digestion diverts energy to the gut instead of the muscles and brain, not what we need when trying to work.

  Mostly I now eat Roast Beef or Ham and Swiss on Bakers Canyon Heritage Style gluten-free bread with some greenleaf lettuce and mayo, with potato chips (don't have the patience to cook potatoes) and olives or pickles fermented NOT vinegar quick pickles (virtually all the pickles in the supermarket).  I drink lots of whole milk, three or four 12 oz glasses a day. Like we were told in the 60's.  "Milk does a body good". Someone started a rumour that humans should not drink milk.  Shortly afterward almond milk (highly processed with calcium and vitamin D added) was promonted as better.  I disagree.  Denigrating potatos and milk, replacing sugar with high fructose corn syrup in virtually all American soft drinks were highly successful marketing strategies, but disasterous for American health.  I repaired my lactose intolerance by making my own dill pickles but Batampt or Bubsies are good.  Lactobacillus from the pickles excrete lactase in the gut to break down lactose.  Most people do not make enough lactase beyond childhood.  So we have a symbiotic relationship with our friends the Lactobacillus.   https://www.makesauerkraut.com/fermented-pickles

I also take 500 - 1500 mcg of liquid Iodine.  According to NHANES the average iodine intake has dropped 50% since 1970.   Muscle tone, skin, hair, healing, brain clarity.

Levothyroxine prescriptions have increased significantly in the United States over the past several years. According to a 2021 analysis from the Pharmaceutical Journal, prescriptions for levothyroxine increased by more than 60% between 2008 and 2019. This increase has occurred even though the incidence of overt hypothyroidism has remained relatively stable.

That is a disturbing set of numbers, since low iodine is a leading cause of low thyroid.

Edited August 29, 2024 by Wheatwacked

[Scott Adams]

Without knowing anything about why you are having spine surgery I'm not sure how anyone could make a recommendations for you to delay it. Certainly there is a reason you and your doctors are planning this, which we know nothing about, and you should discuss your vitamin deficiencies with your doctor now.

[knitty kitty]

@Scott Adams,

I had surgery while my health was going downhill due to undiagnosed, untreated Celiac Disease.  I know now I had vitamin deficiencies.  My incision did not heal properly.  The muscles underneath atrophied.  The blood supply and nerves did not grow back.  I am left with a cold, numb area.  I have a scar worthy of a horror movie.  

Our bodies need Vitamin D, Vitamin A, Vitamin C, the B vitamins and minerals to heal the skin and regenerate damaged tissues.

P.S.  My doctor blamed me, saying I must be treating it wrong or pulled my stitches...no awareness of nutritional deficiencies.

Edited August 29, 2024 by knitty kitty
Added post script

[Wheatwacked]

My friend had cataract surgery that failed.  The surgeon blames her for moving during the surgery.

If Ashleysue can wait for the surgery until the surgeon has an opening in his schedule, she can wait to see her response to GFD.  I was taking 30mg prednisone a day just to get out of bed. Post GFD I am painfree.

Edited August 30, 2024 by Wheatwacked