Unsure if I am getting better?

[thorn]

Hello again, everyone. I'm trying to be patient with celiac, as I was only diagnosed Nov. Last year, and been gluten free since mid-December. However, it feels like I'm playing a game of whack-a-mole. Every time one issue dies down, another comes up.

Since I last posted I've gotten a slight increase in appetite, which is great, as it seems to continue to build.

But now my stomach feels like it hurts a Lot of the time. Even just standing outside will make it hurt. It usually calms down when I am sitting, though. I'm unsure if I have another intolerance or allergy that may be contributing, and I don't know how to check it. Brain fog is also pretty big, I've been feeling extremely tired lately. I still can't talk to my friends with my voice much if at all because I will simply feel too sick.

Sorry if this post is confusing. I'm just tired. I know it's only been 4 months but I want to be able to go on a walk, or something, without feeling like I'm gonna pass out

[knitty kitty]

Welcome back, @thorn,

Can you tell us what medications you're on?  Also tell us what you include in your diet.  

 

[thorn]

2 hours ago, knitty kitty said:

Welcome back, @thorn,

Can you tell us what medications you're on?  Also tell us what you include in your diet.  

 

I'm unsure how to translate all of my meds, as I am not in the US. But I take gaviscon (liquid) for reflux, once a day. Seroquel for sleep (once a day as well). And I currently have a medication called Afipran, for nausea. I take at most 1.5 pills of that a day.

My diet is currently a little messy I'd say, ahah. Currently though: white rice, ground chicken meat, corn/peas/carrots/broccoli/cauliflower/asparagus are a mix and match of what I have for breakfast. The rest of the day I will usually munch on rice cakes with a thin layer of dark chocolate on top, and gluten-free crispbread with chia seeds, as well as gluten free nacho chips as I believe they are called here. I don't really eat a lot of milk products still as I am nervous to do so, the rice crackers being the main exception.

I have a pretty decent sweet tooth, but I can't really enjoy sweets much at the moment, they make me feel way too nauseous...

Also I am sorry if this is a strange thing to add-on, as I can't tell if I'm being paranoid or not, but my hips/tailbone area are hurting as of the last couple days. I'm not moving much which I hope is the reason behind it, but I'm sure it's also because I lost a lot of weight due to celiac. About 1/4th of my previously normal weight is gone. 

I hope this helps, thank you so much for replying. 

[knitty kitty]

@thorn,

The white rice and rice cakes, gluten free corn chips and crisp bread are not allowed on the Autoimmune Paleo Diet.  These are empty carbohydrates.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals. 

Gluten containing products are required by law to be enriched with vitamins and minerals to replace those lost in processing.  

Thiamine is needed to turn carbohydrates, fats, and protein into energy for the body to use inside each cell.  

Without enough thiamine in your diet, you suffer unintentional weight loss, loss of appetite, constipation, brain fog, nausea and difficulty talking.  These are all related to thiamine deficiency.  

The World Health Organization has a field test for thiamine deficiency:  Can you rise from a squat?  If you can't rise to a standing position after being in a squat, you have a serious thiamine deficiency.

 

Look, this article has great information on thiamine, but the site is selling vitamins.  I'm not endorsing these vitamins, just the information.

"Nourish your Nerves & Access Food Energy with Thiamine (Vitamin B1)"

https://www.caltonnutrition.com/nourish-your-nerves-access-food-energy-with-thiamine-vitamin-b1/

 

Your Seroquel and your Afripan are medications which can interfere with thiamine absorption.  

It's rare to be deficient in just one vitamin, like your low Vitamin D.  B12 and iron can be stored in the liver for a long time (like years), but the other several B vitamins can't be stored for months.  You can become insufficient in thiamine in as little as nine days, other B vitamins in twenty-one days.

Doctors have limited training in vitamins and minerals.  Blood tests for vitamin deficiencies are NOT accurate.  In fact, their rule of thumb is to go ahead and give thiamine because it's harmless (while they wait two weeks for vitamin deficiency testing results) and because prolonged thiamine deficiency can cause permanent damage to your nerves and brain function. 

High dose Thiamine (>more than 500mg/day for three months minimum) is the treatment for thiamine deficiency.  Magnesium is needed for thiamine to work properly.  Magnesium citrate will help with your constipation, too.  And a B Complex, because the B vitamins all work together.

I'm speaking from experience.  I learned the hard way.  I suffered severe thiamine deficiency.  I recognize the symptoms.

Not medical advice.  Life experience.

 

 

 

[RMJ]

Your diet doesn’t sound like it provides a whole lot of nutrition. Is it possible to work with the equivalent of a U.S. registered dietician in your country?

[thorn]

1 hour ago, RMJ said:

Your diet doesn’t sound like it provides a whole lot of nutrition. Is it possible to work with the equivalent of a U.S. registered dietician in your country?

HI. Yes, I'm aware my diet isn't great, haha... I am currently working with something similar to a dietician. We're going to speak again in a couple of months.

Part of the problem is that my diet started out as a few crackers and nuts a day. I am not exaggerating when I say I only ate a couple of handfuls of this, because it was all I could stomach. So it's been a slow improvement, but my appetite still isn't very high. 

Another issue is that I am both a picky eater and I tend to get 'stuck' on foods that I enjoy. I also don't know... Which foods I need to eat for my body to be good. 

[thorn]

16 hours ago, knitty kitty said:

@thorn,

The white rice and rice cakes, gluten free corn chips and crisp bread are not allowed on the Autoimmune Paleo Diet.  These are empty carbohydrates.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals. 

Gluten containing products are required by law to be enriched with vitamins and minerals to replace those lost in processing.  

Thiamine is needed to turn carbohydrates, fats, and protein into energy for the body to use inside each cell.  

Without enough thiamine in your diet, you suffer unintentional weight loss, loss of appetite, constipation, brain fog, nausea and difficulty talking.  These are all related to thiamine deficiency.  

The World Health Organization has a field test for thiamine deficiency:  Can you rise from a squat?  If you can't rise to a standing position after being in a squat, you have a serious thiamine deficiency.

 

Look, this article has great information on thiamine, but the site is selling vitamins.  I'm not endorsing these vitamins, just the information.

"Nourish your Nerves & Access Food Energy with Thiamine (Vitamin B1)"

https://www.caltonnutrition.com/nourish-your-nerves-access-food-energy-with-thiamine-vitamin-b1/

 

Your Seroquel and your Afripan are medications which can interfere with thiamine absorption.  

It's rare to be deficient in just one vitamin, like your low Vitamin D.  B12 and iron can be stored in the liver for a long time (like years), but the other several B vitamins can't be stored for months.  You can become insufficient in thiamine in as little as nine days, other B vitamins in twenty-one days.

Doctors have limited training in vitamins and minerals.  Blood tests for vitamin deficiencies are NOT accurate.  In fact, their rule of thumb is to go ahead and give thiamine because it's harmless (while they wait two weeks for vitamin deficiency testing results) and because prolonged thiamine deficiency can cause permanent damage to your nerves and brain function. 

High dose Thiamine (>more than 500mg/day for three months minimum) is the treatment for thiamine deficiency.  Magnesium is needed for thiamine to work properly.  Magnesium citrate will help with your constipation, too.  And a B Complex, because the B vitamins all work together.

I'm speaking from experience.  I learned the hard way.  I suffered severe thiamine deficiency.  I recognize the symptoms.

Not medical advice.  Life experience.

 

 

 

Hello, thank you so much for your reply. I've been told before on this forum that thiamine deficiency is a likely culprit, and I have also been told today to ask my doctor when I next see her, to ask about checking my vitamin/mineral levels and taking a multivitamin since I do not have the most varied diet as of speaking. Also, for the crisp read and rice cakes, my nutrition specialist (rough translation) recommended this to me a few months back. In her words "you don't have to eat healthy, you just have to eat." so that is what I have been trying to do. 

I have tried to bring up the thiamine deficiency before, but found myself rebuffed rather quickly with 'well, your B vitamin levels look fine, so you probably don't have it.' I am unsure how to ask my doctor to check for it, I'm unsure how to aquire thiamine, and I am nervous to be rebuffed again haha..

I agree though, that thiamine deficiency is definitely something to look into. And for the squat test, that is something I've only been able to do on a few occasions throughout my life, without using my hands to help me, and those times are long gone. If you don't mind me asking, do you have any tips for how to bring this up to my doctor? I know I should stand my ground on it, but it would be helpful to potentially know how to get it tested and such. Thank you very much again for this response, it is very helpful. 

Edited April 22, 2021 by thorn
Additional information re: diet

[Scott Adams]

Note to self: Start an illegal vitamin & supplement smuggling operation into Europe... 😁

[RMJ]

A few thoughts:

I can understand what your nutrition specialist means - there is a point where ANY calorie is better than nothing.  

I’ve always been skinny, and when trying to gain weight I have to eat multiple small meals whether I am hungry or not.  If I just eat to satisfy hunger I lose weight.  I also find that nuts and peanut butter help because they are high calorie.  Can you comfortably eat fruits?  They are good for you and generally more calories than vegetables.  What about other meats that aren’t as lean as chicken, like beef?  Instead of milk, what about cheese - another calorie-dense food? Aged cheeses are generally low in lactose, which is the problem molecule from dairy for people healing from celiac disease.

“Your B vitamin levels look fine” - did they test for Vitamin B1, another name for thiamine? 

[knitty kitty]

I like the book The Paleo Approach by Dr. Sarah Ballantyne (a Celiac herself).  She includes information on the Autoimmune Paleo Diet and nutritional aspects of Celiac Disease.

Thiamine is sold over the counter, no prescription needed, as a vitamin supplement.  I get mine on Amazon.  Allithiamine and Benfotiamine are the kinds of thiamine I take.  Thiamine is water soluble and nontoxic.  Any excess is excreted in urine.  

Thiamine usually produces improvement within a few hours.  

Doctors' rule of thumb is to administer thiamine and look for improvement, rather than testing for thiamine deficiency testing which is expensive and time consuming (two weeks).  Ask for the erythrocyte transketolase test.

Thiamine blood tests only pick up how much thiamine you've consumed in the past twenty-four hours.  Not a reliable indicator of deficiency in the body's organs, brain, and muscles.

500 mg or more spaced out through the day for several months will help restore thiamine levels.

Hope this helps!

 

[Sad about gluten ie]

On 4/21/2021 at 8:56 PM, knitty kitty said:

@thorn,

The white rice and rice cakes, gluten free corn chips and crisp bread are not allowed on the Autoimmune Paleo Diet.  These are empty carbohydrates.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals. 

Gluten containing products are required by law to be enriched with vitamins and minerals to replace those lost in processing.  

Thiamine is needed to turn carbohydrates, fats, and protein into energy for the body to use inside each cell.  

Without enough thiamine in your diet, you suffer unintentional weight loss, loss of appetite, constipation, brain fog, nausea and difficulty talking.  These are all related to thiamine deficiency.  

The World Health Organization has a field test for thiamine deficiency:  Can you rise from a squat?  If you can't rise to a standing position after being in a squat, you have a serious thiamine deficiency.

 

Look, this article has great information on thiamine, but the site is selling vitamins.  I'm not endorsing these vitamins, just the information.

"Nourish your Nerves & Access Food Energy with Thiamine (Vitamin B1)"

https://www.caltonnutrition.com/nourish-your-nerves-access-food-energy-with-thiamine-vitamin-b1/

 

Your Seroquel and your Afripan are medications which can interfere with thiamine absorption.  

It's rare to be deficient in just one vitamin, like your low Vitamin D.  B12 and iron can be stored in the liver for a long time (like years), but the other several B vitamins can't be stored for months.  You can become insufficient in thiamine in as little as nine days, other B vitamins in twenty-one days.

Doctors have limited training in vitamins and minerals.  Blood tests for vitamin deficiencies are NOT accurate.  In fact, their rule of thumb is to go ahead and give thiamine because it's harmless (while they wait two weeks for vitamin deficiency testing results) and because prolonged thiamine deficiency can cause permanent damage to your nerves and brain function. 

High dose Thiamine (>more than 500mg/day for three months minimum) is the treatment for thiamine deficiency.  Magnesium is needed for thiamine to work properly.  Magnesium citrate will help with your constipation, too.  And a B Complex, because the B vitamins all work together.

I'm speaking from experience.  I learned the hard way.  I suffered severe thiamine deficiency.  I recognize the symptoms.

Not medical advice.  Life experience.

 

 

 

Woah woah woah celiac can make it hard to talk??  

[knitty kitty]

Thiamine deficiency can make it hard to talk.  Thiamine helps the Vagus nerve and other nerves to relay messages including messages to the muscles involved in speech.

Thiamine deficiency has been linked to stuttering, voice hoarseness, and some types of mutism.

Celiac Disease damages the small intestine where thiamine and other B vitamins and minerals are absorbed.  The eight B vitamins all work together.  Thiamine can not be stored long (3 weeks).  You can become deficient in as little as nine days if you're not eating well, are ill, have digestive problems (diarrhea, vomiting, constipation), under emotional or physical stress, are an athlete or work out, do physical labor in hot weather, eat a high carbohydrate diet, or have a malabsorption disease like Celiac. 

Every single cell needs thiamine to produce energy to do its functions, especially the brain, lungs, and heart.  

Thiamine is given to CoVid patients in ICU to help them breathe and fight sepsis.

It's rare to have just a deficiency in one vitamin.  Thiamine deficiency shows up first because thiamine is not able to be stored long and we use so much of it. 

 

[thorn]

12 hours ago, RMJ said:

A few thoughts:

I can understand what your nutrition specialist means - there is a point where ANY calorie is better than nothing.  

I’ve always been skinny, and when trying to gain weight I have to eat multiple small meals whether I am hungry or not.  If I just eat to satisfy hunger I lose weight.  I also find that nuts and peanut butter help because they are high calorie.  Can you comfortably eat fruits?  They are good for you and generally more calories than vegetables.  What about other meats that aren’t as lean as chicken, like beef?  Instead of milk, what about cheese - another calorie-dense food? Aged cheeses are generally low in lactose, which is the problem molecule from dairy for people healing from celiac disease.

“Your B vitamin levels look fine” - did they test for Vitamin B1, another name for thiamine? 

Thanks for the response! 

I've always had the opposite problem, I've been chubby for all my life until recently. I lost ~1/4th of my body weight due to celiac and the symptoms it gave me, haha. 

I have not tried to eat fruits yet, but I can certainly try. My problem with them is that they are still kind of a lot of food for me. My breakfast is currently about the size of 1 1/2 or 2 apples (just based on literal physical size of the meal). I'll definitely look into aged cheeses as well, though I am admittedly picky and wary of foods I've never tried.

And no, as far as I am aware it did not test for thiamine when I did take blood tests. It's been a few months since I took the tests, but I know it looked at iron, B12, D-vitamin, among a few others. But I think a lot of the B vitamins that are tested for are sort of lumped together. So if they look fine, it's assumed that the rest is fine as well, which is a bit frustrating.