Refractory Celiac?

[Scott Adams]

I'm sorry to hear that you're still having issues and had to go to the ER.

Are you still eating the Kate Farms’s nutritional shakes each day? If so, I really think you should change this up and try making your own shakes from scratch, switching to whole foods you prepare, etc, and keeping a food diary. It's possible you have a separate intolerance to something in them.

Also, I forgot if you are dairy/casein-free or not, but if not you might want to check out this thread:

 

[Earlene Xavier]

4 minutes ago, Scott Adams said:

I'm sorry to hear that you're still having issues and had to go to the ER.

Are you still eating the Kate Farms’s nutritional shakes each day? If so, I really think you should change this up and try making your own shakes from scratch, switching to whole foods you prepare, etc, and keeping a food diary. It's possible you have a separate intolerance to something in them.

Also, I forgot if you are dairy/casein-free or not, but if not you might want to check out this thread:

 

I absolutely agree, eat whole foods that you prepare from scratch, and don't buy anything with a barcode. You only need to read the ingredients on foods with a 'gluten free' label, very scary!

[J Morgan]

2 hours ago, Earlene Xavier said:

I absolutely agree, eat whole foods that you prepare from scratch, and don't buy anything with a barcode. You only need to read the ingredients on foods with a 'gluten free' label, very scary!

My dietician has me on a different shake now.  Essential care junior. It is made of fermented amino acids and has no allergens. I have not eaten lactose or any dairy in a month and really didn’t eat much before that. (Maybe cheese kn a gluten-free Pizza) with all the food changes it is just getting worse instead of better. Sigh. I’ll talk to her about whole food shakes and see what she says. I’m weirdly terrified of all food at this point. 

[Wheatwacked]

Nutritarian Diet   Recipes | DrFuhrman.com https://www.drfuhrman.com/recipes?gclid=EAIaIQobChMIspfQzpTN8QIVBGpvBB0rkwA7EAMYASABEgL6gPD_BwE

[trents]

The low end of normal for platelets is 150k. Physicians don't get excited about changes in blood parameters until they fall significantly out of normal range. As we age it is common for platelet count to drop due to clumping. 

[knitty kitty]

22 hours ago, J Morgan said:

My dietician has me on a different shake now.  Essential care junior. It is made of fermented amino acids and has no allergens. 

Essential care junior's first ingredient is corn syrup solids.  Corn and corn derivatives can be irritating to some Celiacs.  

In an earlier post, you mentioned having more neurological problems.  You need to be checked for vitamin deficiencies.  Vitamin deficiencies can cause many of the symptoms you relate.  You have had nausea and diarrhea for many weeks, long enough to develop vitamin deficiencies.  

Doctors don't pay attention to the importance of vitamins anymore.  Doctors are trained to prescribe pharmaceuticals.  You are not ill because you are deficient in pharmaceuticals.  You are ill because of deficiencies in vitamins.  

It's rare to have a deficiency in just one vitamin because the eight B vitamins all work together.  Thiamine deficiency often comes first.

Thiamine is Vitamin B1.  Like all of the eight B vitamins, it is water soluble.  Thiamine cannot be stored for long.  You can deplete your thiamine in as little as nine days.  Thiamine deficiency will cause neuropathy and altered mental status as you've described.  I know from first hand experience.  

I encourage you to ask for testing for vitamin deficiencies, especially the Erythrocyte transketolase test for thiamine deficiency.  (The WHO's field test for thiamine deficiency is to see if you can rise from a squat.)  

 

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

 

[J Morgan]

7 minutes ago, knitty kitty said:

Essential care junior's first ingredient is corn syrup solids.  Corn and corn derivatives can be irritating to some Celiacs.  

In an earlier post, you mentioned having more neurological problems.  You need to be checked for vitamin deficiencies.  Vitamin deficiencies can cause many of the symptoms you relate.  You have had nausea and diarrhea for many weeks, long enough to develop vitamin deficiencies.  

Doctors don't pay attention to the importance of vitamins anymore.  Doctors are trained to prescribe pharmaceuticals.  You are not ill because you are deficient in pharmaceuticals.  You are ill because of deficiencies in vitamins.  

It's rare to have a deficiency in just one vitamin because the eight B vitamins all work together.  Thiamine deficiency often comes first.

Thiamine is Vitamin B1.  Like all of the eight B vitamins, it is water soluble.  Thiamine cannot be stored for long.  You can deplete your thiamine in as little as nine days.  Thiamine deficiency will cause neuropathy and altered mental status as you've described.  I know from first hand experience.  

I encourage you to ask for testing for vitamin deficiencies, especially the Erythrocyte transketolase test for thiamine deficiency.  (The WHO's field test for thiamine deficiency is to see if you can rise from a squat.)  

 

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

 

Hi! Thank you so much for your reply-I am so grateful for this group. 

The essential care jr websites says it does not have corn syrup solids. Which is why My dietician ordered it for me. No gluten, no corn, no lactose…no allergens.  https://essentiallybetter.com/our-ingredients/

My primary has said all of my B vitamins and D vitamin levels are fine. I forgot to ask about the choline though that someone else mentioned ! I’ll send them a message. 
 

The going theory now is maybe I have adhesions from gallbladder surgery last year and they are causing problems. I have a CT tomorrow and a meeting with other a colorectal surgeon on Monday. 
 

Fingers crossed that is part of the puzzle? 

[J Morgan]

4 minutes ago, J Morgan said:

Hi! Thank you so much for your reply-I am so grateful for this group. 

The essential care jr websites says it does not have corn syrup solids. Which is why My dietician ordered it for me. No gluten, no corn, no lactose…no allergens.  https://essentiallybetter.com/our-ingredients/

My primary has said all of my B vitamins and D vitamin levels are fine. I forgot to ask about the choline though that someone else mentioned ! I’ll send them a message. 
 

The going theory now is maybe I have adhesions from gallbladder surgery last year and they are causing problems. I have a CT tomorrow and a meeting with other a colorectal surgeon on Monday. 
 

Fingers crossed that is part of the puzzle? 

Just wanted to say I looked in my chart online and it looks like they have only tested for B12 and D, calcium, potassium and magnesium. I just requested they do the full panel, including the thiamine. Thank you!

[knitty kitty]

Ok, I got the EquaCare Jr label which does have corn syrup solids.  But you're right, the Essential Care, Jr has tapioca starch and tapioca solids.  Again, some Celiacs have problems with tapioca products.

Vitamins B12 and Vitamin D can be stored in the liver for years.  The other B vitamins can become deficient in a matter of weeks.  

Most blood tests for the B vitamins are not accurate because the deficiencies take place inside cells of the tissues of the body.  The tissues are deficient while the vitamins go in the blood stream to supply the brain.  The erythrocyte transketolase test looks at the byproduct of thiamine utilization, so is more accurate.  

A "banana bag" is an intravenous fluid bag filled with vitamins (riboflavin gives it a yellow color hence the name).  B vitamins are water soluble and safe (there's no toxicity level).  Have any of your doctors recommended or offered one of these considering your poor food intake and absorption problems?   

When I was so deficient, I had immediate improvement when supplementing B vitamins.  

Here's more of my story and research.  

 

[Wheatwacked]

I needed to make this list for my doctor so I thought I would share it. I take them together at the same time every day. In addition I target 5 grams potassium daily from food sources. My perception is that my recovery is accelerating. BP,total cholesterol and triglycerides are trending down. Only meds are 10 mg prednisone and 5 mg buspirone. It is a pain to take so many pills, but it is working for me. gluten-free since 2014. Each additional vitamin had positive effects within a week.

 

 

[J Morgan]

39 minutes ago, Wheatwacked said:

I needed to make this list for my doctor so I thought I would share it. I take them together at the same time every day. In addition I target 5 grams potassium daily from food sources. My perception is that my recovery is accelerating. BP,total cholesterol and triglycerides are trending down. Only meds are 10 mg prednisone and 5 mg buspirone. It is a pain to take so many pills, but it is working for me. gluten-free since 2014. Each additional vitamin had positive effects within a week.

 

 

Thank you! I reached out to my doctor and they said they have tested for “all nutrients” but I’m doubtful because I only see the basic stuff in my chart. 
 

in other news I got my CT of abdomen today and they saw no signs of inflammation in my guts but did find my common bile duct was dilated to 1.5cm. I’m not sure if this is significant/has anything to do with my symptoms-GI doesn’t seem too worried about that…or anything really…even though I can’t eat solid food and am having all sorts of muscle issues. Which to me seems like kinda a big deal but I guess if no problems show up on tests there isn’t anything they can do  

 

 

[Wheatwacked]

"But nothing changed and my health went downhill.  My doctor said I just had gastritis. In 2008 I went to the emergency room with head pain with numbness on the right side of my face. After numerous scans and opinions, doctors determined I had a non-specific version of Trigeminal Neuralgia." https://www.drfuhrman.com/success-stories/775/sues-story

 

On 6/17/2021 at 12:49 AM, J Morgan said:

Prednisone. I’ve been on it since March…tapering now and down to 7.5

Not a doctor, but I have been on prednisone since 2012 and it was the first thing that made life bearable. 30 mg a day. Then GFD + vitamins let me get down to 10. I've been trying since January to stop at my doctors insistance. In April had a positive stool test for colon cancer, so I stopped all supplements and a week later the repeat test was negative. but my quality of life has gone down to where I get nothing done. Even had a prescription for Tramodol for pain. l recently I restarted 10 mg and all my supplements. Here are my symptoms that improved in just a short time.

Virtually no pain. Activity level up, sleep better, damaged rotator cuff has improved range of motion and less pain, can sleep on that side now, overall body more flexible, improved appitite ( I am anorexic by nature), comfortable to sleep at 76 degrees ( I used to turn on the heat below 80 degrees, weekend warrior pains are gone, better mental clarity, better feeling of wellbeing, doing chores I've ignored for months, longer awake hours, motivated to do stuff, extended attention span.

A side story on prednisone: My 9 month black lab x-rays showed congenital hip displasia. He was put on prednisone. At nine years old his hips were x-rayed again and showed zero evidence of arthitis. He passed from degenerative myelitis shortly after. The prednisone protected his joints. Was on lamb and rice, like my other dogs who did have arthitis.

The doctor does not need to worry about your bile duct. "Gallbladder removal surgery, also known as a cholecystectomy, is a very common procedure."https://www.nhs.uk/conditions/gallbladder-removal/.😉

 

[knitty kitty]

11 hours ago, J Morgan said:

Thank you! I reached out to my doctor and they said they have tested for “all nutrients” but I’m doubtful because I only see the basic stuff in my chart. 
 

in other news I got my CT of abdomen today and they saw no signs of inflammation in my guts but did find my common bile duct was dilated to 1.5cm. I’m not sure if this is significant/has anything to do with my symptoms-GI doesn’t seem too worried about that…or anything really…even though I can’t eat solid food and am having all sorts of muscle issues. Which to me seems like kinda a big deal but I guess if no problems show up on tests there isn’t anything they can do  

 

 

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

 

Please read this.  It describes gastrointestinal beriberi due to thiamine deficiency in this case caused by poor diet and alcohol, but Covid causes thiamine deficiency, too.  Different causes, same results.  Thiamine deficiency resulting in gastrointestinal beriberi.  

Doctors don't recognize vitamin deficiency diseases because we don't live in a third world country.  

My doctors couldn't figure out what was wrong with me, either.  I was written off as hypochondriac.  I had been prescribed medication that is known to cause thiamine deficiency.  Along with malabsorption from undiagnosed Celiac Disease, the medication pushed me into thiamine deficiency and gastrointestinal beriberi.  I'm a microbiologist.  I knew about cell biology and vitamins and minerals.  I took high dose thiamine (in the form allithiamine and benfotiamine -- available without prescription) and had improvement immediately.  I had developed other deficiencies as well that have been corrected with supplementation.  Yeah, I used to think vitamins were for health nuts, but they are the fundamental chemicals our bodies rely on to function.

 

[J Morgan]

3 hours ago, knitty kitty said:

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

 

Please read this.  It describes gastrointestinal beriberi due to thiamine deficiency in this case caused by poor diet and alcohol, but Covid causes thiamine deficiency, too.  Different causes, same results.  Thiamine deficiency resulting in gastrointestinal beriberi.  

Doctors don't recognize vitamin deficiency diseases because we don't live in a third world country.  

My doctors couldn't figure out what was wrong with me, either.  I was written off as hypochondriac.  I had been prescribed medication that is known to cause thiamine deficiency.  Along with malabsorption from undiagnosed Celiac Disease, the medication pushed me into thiamine deficiency and gastrointestinal beriberi.  I'm a microbiologist.  I knew about cell biology and vitamins and minerals.  I took high dose thiamine (in the form allithiamine and benfotiamine -- available without prescription) and had improvement immediately.  I had developed other deficiencies as well that have been corrected with supplementation.  Yeah, I used to think vitamins were for health nuts, but they are the fundamental chemicals our bodies rely on to function.

 

 Where do I get these vitamins?!? Amazon? Specific type you recommend? 

[knitty kitty]

4 hours ago, J Morgan said:

 Where do I get these vitamins?!? Amazon? Specific type you recommend? 

https://www.google.com/search?q=ecological+formulas+allithiamine+vitamin+b1&source=hp&oq=Ecological+Formulas+all&gs_l=mobile-heirloom-hp.1.1.0l2j0i22i30l2.2237.8195.0.10212.13.12.0.1.1.0.245.1765.0j11j1.12.0....0...1.1j4.34.mobile-heirloom-hp..3.10.1347.wMpOF3aXHRQ

And...

https://www.google.com/search?q=benfotiamine+vitamin+b1.+life+extension&oq=benfotiamine+vitamin+b1.+life+extension&aqs=heirloom-srp..

 

Benfotiamine and Allithiamine are fat soluble forms of thiamine that are able to get into cells easily.  Benfotiamine helps with diabetic neuropathy, while Allithiamine can cross the blood brain barrier and helps with brain function.  

High doses of thiamine are required.  A minimum of 500mg per day, some people need more.  I took 100 mg capsules every two or three hours and increased until I was taking that 500 mg per day.  

 

 

[Wheatwacked]

I took the opportunity to calculate the totals for 400 grams of Equacare, Jr as if it were your total nutrition for the day. Obviously for information purposes only. 1876 calories. It seems to be mostly corn syrup solids 34% (sugar carbs). Most of the calories are fats and carbs. Only 33 grams of sodium (RDA= 500) so the potassium to sodium ratio is 88:1 WHO is looking for 1:1 or higher. "Signs and symptoms of hyponatremia can include altered personality, lethargy and confusion. Severe hyponatremia can cause seizures, coma and even death". Calcium is only 9% RDA, Magnesium 70%, Potassium 61%. Seems that with digestive issues especially that bile duct question that low fat, low sugar would make more sense,

On 7/7/2021 at 5:21 PM, J Morgan said:

if no problems show up on tests there isn’t anything they can do

as my grandmother used to say: Bite your tongue. They can give up, you can't.

[Wheatwacked]

If you eat a 3 ounce bag of potato chips with the 400 grams of Equicare powder you lower K/Na to 7.8:1, healthier. Also brings potassium and magnesium to to 84%, Sodium to 101%. Calcium (11%) needs 1000 mg more and you have at least 100% of the others. Six ounces of chips gives you 97% Magnesium and >100% on everything but Calcium it is still short 1050 mg.

 

[knitty kitty]

@J Morgan,

Thiamine needs magnesium to work properly.  I remember you said your magnesium was checked as being fine, but adding a magnesium supplement wouldn't hurt.  Magnesium citrate and magnesium glycinate are the most easily absorbed (and least likely to have a laxative effect).  

Keep us posted on your progress.

 

[Melissa93]

Hey!

 

I'm so sorry to read all the trouble you've had with your health lately, it sounds terrifying and I hope you're okay considering everything that has happened. I can't give you any advice based on all your neuro problems, but I've had long covid myself starting March 2020 and had a lot of GI problems from it as well. I think you should really considered very slowly adding more whole foods products into your diet. If you feel like solid food is causing too much pain, try adding whole food products through a blender. It sounds like your GI system is so out of wack that anything that requires the slightest digestin process causes pain, but in order to get your GI system back on track your system does need all that food. You can try to make smoothies adding spinach, kale, flax seeds, hemp seeds, chia seeds, gluten-free oats (if you tolerate), some berries etc. Slowly incorporating more whole plant foods into your diet to get your bowel moving again and recover what is left of your microbiome. Your digestive system is a muscle and not having worked it for so low, will cause discomfort so taking it very slowly. Definitely recommend staying off lactose and meat probably as well, as it does zero to your digestive system, but using a plant based gluten free milk that is fortified with vitamins in your situation is probably good.

 

Best of luck!

[trents]

Plant based gluten free milk? Do you refer to milk substitutes? Last I knew, milk is produced by animals.

I don't agree with going to a vegetarian diet. For one thing, it's hard to get all the nutrition you need from plants. B12 is an example. Iron is another. For another, many people find meat easier to digest than many vegetables. A well-rounded diet should include both animal and plant sources.

However, I do agree with the blender recommendation. That should make digestion easier.

Edited July 9, 2021 by trents

[Earlene Xavier]

15 minutes ago, trents said:

Plant based gluten free milk? Do you refer to milk substitutes? Last I knew, milk is produced by animals.

I don't agree with going to a vegetarian diet. For one thing, it's hard to get all the nutrition you need from plants. B12 is an example. Iron is another. For another, many people find meat easier to digest than many vegetables. A well-rounded diet should include both animal and plant sources.

However, I do agree with the blender recommendation. That should make digestion easier.

I agree Trents. Plants with all their anti-nutrients/toxins are very hard on the small intestine, (think leaky gut, which was my problem), whereas meat and animal fats are entirely and easily absorbed in the small intestine, contain all the nutrients you need and are much more bioavaible than any plant base nutrients.

[Melissa93]

Honestly I think you both need some actual science nutritional education if you think this. Our large intestine works entirely on fiber, which is solely in plant food (not just vegetables, but all plant food). You need a healthy large microbiome in order to have a good digestive system and overall health, which you can't get from animal based products. Not saying that all animal products are bad, but if you look at biomedical research on NCBI you can't deny that animal products bring more bad nutrional elements (saturated fat, trans fat, cholesterol, hormones, antibiotics) than they bring good (calcium, iron etc). In order to heal problems like leaky gut, food sensitivities, diarrhea, constipation, digestive problems etc, you need to look at your digestive problem at a whole. Plants are not less bioavailable, and they have all the 9 essential amino acids. Yes, plant's do not have vitamin B12 or very limited vitamin D, due to our soil being completely depleted and us adding those vitamins to the animals we farm. Not the plants it's fault and many meat eating people still have vitamin D or other nutritional deficiencies. High fructose corn syrup is also super easily absorbed, doesn't mean it is good for you. The easier food absorbes, the harder it is on the body long term most of the cases (refined sugar, saturated fat, cholesterol).

I myself would lean more towards going for fish than meat, as it has more nutrional value, less bad things, and with dealing with celiac symptoms it's definitely important to watch your vitamins which makes fish a good add. I didn't say to go vegetarian.

[J Morgan]

18 hours ago, Wheatwacked said:

I took the opportunity to calculate the totals for 400 grams of Equacare, Jr as if it were your total nutrition for the day. Obviously for information purposes only. 1876 calories. It seems to be mostly corn syrup solids 34% (sugar carbs). Most of the calories are fats and carbs. Only 33 grams of sodium (RDA= 500) so the potassium to sodium ratio is 88:1 WHO is looking for 1:1 or higher. "Signs and symptoms of hyponatremia can include altered personality, lethargy and confusion. Severe hyponatremia can cause seizures, coma and even death". Calcium is only 9% RDA, Magnesium 70%, Potassium 61%. Seems that with digestive issues especially that bile duct question that low fat, low sugar would make more sense,

as my grandmother used to say: Bite your tongue. They can give up, you can't.

First I want to say how absolutely amazing it is that you went and did this. I am soooo appreciative of this group and the information you have shared with me. Second, the thing you looked up is not the stuff my nutritionist has given me. She has given me Essential Care Jr. I took a pic and am hoping it will upload here. It has zero corn syrup solids, I would never eat something with corn syrup solids-even if I wasn't dealing with so much gastro stuff!

I have now lost 7.5% of my weight in less than a month and the entirety of my appetite, so even drinking foods is a challenge at this point. Good news is Mayo Clinic is "in network" for my insurance so it won't cost me 100K for them to poke and prod me at the end of the month.

What do we think about vitamin water? My hubby found one that has 100% of all of the B vitamins. I'm hoping that plus the actual vitamins might heal the guts up a bit more. I talk to dietitian on Monday (I think? My brain is little fuzzy with...well everything these days) and will see if investing in a really good blender may be helpful.

[J Morgan]

1 hour ago, trents said:

Plant based gluten free milk? Do you refer to milk substitutes? Last I knew, milk is produced by animals.

I don't agree with going to a vegetarian diet. For one thing, it's hard to get all the nutrition you need from plants. B12 is an example. Iron is another. For another, many people find meat easier to digest than many vegetables. A well-rounded diet should include both animal and plant sources.

However, I do agree with the blender recommendation. That should make digestion easier.

I haven't had any meat in forever. The last time I tried ANY solid food (grapes) I was in excruciating pain for hours, I can't imagine a piece of meat! I seriously wish there was a nutrition pod that I could just eat that had all the good stuff and was easily digestible. I think this is why my nutritionist has me on the essential care jr.

Three weeks to Mayo, three weeks to Mayo, three weeks to Mayo. I really hope they can figure it out.

[Melissa93]

Good luck! When I first got diagnosed I wasn't able to eat any higher fructose or lactose products because it would cause me a lot of pain for hours, which included grapes, apples, mangos etc. I went back to eating low fructose fruits like blue berries, strawberries, raspberries, greenish banana. Just in case this helps as your vili are blunted!