How long after diagnosis until you noticed improvement? What do you wish you'd known then?

[LaLeoLoca]

Hello all! Newcomer here. I slogged through hell barefoot to come to this place of understanding, and am still trying to absorb information, adjust, and heal. My question is about that: Healing.

I'm 38 and was struck down by covid three years ago, suddenly. I'd always been exhausted, and suffered bad bouts of viral infection, plus an array of other basically disabling symptoms I just powered through (that every doctor blew off). I was diagnosed with ulcerative colitis at age 20, and it stayed bad. Bad allergies. Tooth and gum problems. The list goes on. 

I’m 14 days post Celiac realization, and have gotten rid of appliances, groceries, bakeware, switched out dog foods and treats, everything I can think of; this has all been accomplished via spouse, as I'm too weak to function. The migraines are beginning to clear but I still have daily fevers, weakness, brain fog, am sleeping 16 to 22 hours a day and just out of it and lying in the dark most of the rest. I have been in a wheelchair and on oxygen for the last two years. I have had bad paralysis and seizures for three years, which may be starting to fade out (to soon to say). I also have severe mycotoxin poisoning, which is what all symptoms had been blamed on prior to the celiac revelation. I check every celiac box and it is the only thing other than the toxins that makes any sense. 

Everyone is different, but I would like to hear stories of what it was like after you first were diagnosed and cut gluten. What were your symptoms? How long until you started to feel the smoke clear? I have read 3-6 months, or years, or never. I have noticed I am thinking a little bit better sometimes (I was forgetting my own name and where I lived). It seems like one day up, 2-3 days down. But I feel hope in my body. I feel that cutting gluten is correct. 

I’m 16.8 fasting, never hungry, still have diarrhea and wet my pants (yay), taking digestive enzymes and the “right” supplements I've read about and that go with my nutritional deficiencies, only eating simple and mushy foods in small amounts. Other than that, what do you feel helped you? What do you feel got in the way of healing that you know better than to do now?

I’m not trying to heal in an instant, just get a grip on hopes and expectations. I tried posting to reddit, but found that some people there are a little pessimistic, and liked the overall attitude and vibe I found on the celiac.com forums. 

Thanks to everyone willing to be helpful and share your stories and tips. I really do want to get better and being new to anything is better when you have the advice of those who have gone ahead on the path. 

[cristiana]

Hi there LaLeoLoca and welcome to the forum!

I am so sorry you have had such a difficult journey.  I am so glad to hear that you feel giving up gluten is making a difference.  May I ask, have you been formally diagnosed with coeliac disease/non-coeliac gluten sensitivity (NCGS)?

Now, everyone's recovery journey is different but for me I would say (a rough idea, it's been a while and my memory is a bit hazy...)

• Persistent watery diarrhea got a lot better after giving up gluten - a few days
• Weight started to go back on about three-four months after adopting a gluten free diet (I'd lost about 20 pounds)
• Loose stools and lower left-sided bloating got a lot better when I came off dairy (but I have gone back to eating it again, still can effect me, but I love dairy so a price I'm prepared to pay!)
• Minor neurological issues - tingling and buzzing in extremities, odd sensations like raindrops were falling on my skin when it wasn't raining, etc - about a year (I think some of this was caused by deficiencies, particularly iron and B12)
• Painful tightness across my forehead and sick, migraine headaches greatly reduced almost immediately, although I still get occasional sick headaches and aura migraines
• Brain fog - still get it.  Not sure why ... could be because I'm perimenopausal, but there are days when I find myself saying the wrong words all the time, others when I can think clearly.  This has been going on long before my diagnosis, I had to give a talk once to the Rotary Club and the audience were chiming in with the words I was searching for when I went blank!
• Sore stomach with gastritis-like symptoms when glutened, consuming pure oats (took me some years before I could eat them again), taking aspirin and certain antibiotics...  Ongoing but now far less frequent.
• Persistently high TTG numbers - eventually came down to normal levels last year.  Gluten sneaking in through shared kitchen, eating out (have stopped doing that), was mistakenly taking supplement that contained gluten.

What really helped was reading this forum (this isn't an advert!) because I had a couple of friends who were diagnosed at the same time as me and they had such an easy return to "normal".  I didn't feel right for quite some time.   

Reading this forum made me realise that some people can have coeliac disease and not know it, others can be extremely sensitive to gluten and the slightest amount can set them off.  It made me realise that everyone is different and gave me hope that things could get better.🤗

Cristiana

Edited December 28, 2022 by cristiana

[knitty kitty]

@LaLeoLoca,

Welcome to the forum!  Thanks for joining us! 

I was in really sad shape prior to my Celiac diagnosis.  I had lots of vitamin and mineral deficiencies.  It took some time to get foods and supplements sorted.  

The diet that made the biggest difference to me is the Autoimmune Protocol Diet.  Developed by Dr. Sarah Ballantyne, a Celiac herself, the AIP diet has been scientifically shown to promote healing.  

Although the diet allows bone broth and fermented milk and veggies, I could not tolerate these because they are high histamine foods and I had a histamine intolerance.  Mast cells tend to over produce histamine when our bodies are deficient in Thiamine Vitamin B1.  

High Dose Thiamine per Dr. Lonsdale helped me the most.  Here's one of his articles with Dr. Chandler Marrs...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/#!po=52.3148

Thiamine will help fight off mycotoxins, and viral infections.  Thiamine helps improve long Covid.  Thiamine can help improve with breathing and oxygen exchange in the lungs (Sailors' asthma).  Thiamine is helpful in neurological problems and in seizures.  Thiamine will help with brain function and memory.  And Thiamine helps with bladder and bowel control.

Remember the eight B vitamins all work together.  Extra thiamine, a B Complex, Vitamin D and C, and magnesium all helped me.

What sort of supplements are you taking?

[Scott Adams]

It took me only a few weeks for my worst symptom--chronic diarrhea--to nearly go away, but since I didn't have a good understanding about how to maintain a 100% gluten-free diet (for example I ate at restaurants and tried to get gluten-free food), I definitely had recurring bouts in the 1-2 years after going gluten-free. I also had to eliminate several other foods like chicken eggs, tomatoes, corn, etc., for a couple of years before I fully recovered. As far as my issues with vertigo and brain fog, those took longer to go away, and I wasn't supplementing properly so some of my minor symptoms like numbness and tingling in my toes/feet didn't go away until decades after going gluten-free. I wish I had known back then about vitamin/mineral supplementation, that is for sure!

More about my supplements are here, other members are free to share their info on that thread as well:

 

[LaLeoLoca]

Thanks for the thoughtful replies, all!

I'm still a bit of a mess but will try to respond to questions.

1. I'm taking a million supplements, it's a bit much for me but I do it. With three years of profound health crisis, I'm a supplement queen. Will begin L-glutamine today, but off the top of my head I take a quality multi that has thiamine and many others, magnesium, C, B6 (that was low), iron (always had anemia), etc. If there was a Miss Supplement pageant, I might get beat, but I'd enter! Supplements and nutrition doesn't get enough mainstream attention. Most I use are Pure Encapsulation brand, they do a good job.

2. Testing: My doctor (PCP, integrative medicine) agrees absolutely that I very likely have celiac, and that's plenty for now. I have zero interest in glutening myself on purpose just to get some labwork and an endoscopy that may not even be done correctly (I live in a poor state with very, VERY limited healthcare options). I also have serious seizures and other problems that mean anesthesia could be very dangerous for me--I might not wake up--so I'm not interested in risking death just to maybe score the USA-approved diagnosis. The extensive clinical history, symptoms, and mountains of labwork all greenlights Celiac, and frankly it's the second thing only to mycotoxin results that has felt "right" in my body when I read it. Even if it's not technically Celiac, what's the difference? Me no eat gluten. Me very sick. Me feel little better after cut gluten. Me want get better more. After a lifetime of being put through the ringer so some jerko doctor could get a lab result, I'm done. I'm out of the game. That's enough for now. So I can't whip out the ruler on endoscopy results, but that is fine with me. I know what I need. (Please don't anybody bully me about it. I'm sadly very used to being bullied, three years and 36 doctors in. My soul is flayed. I've been through hell and am still not out.)

Today, 16 days since I figured it out, I'm sitting up at 2 pm and typing this. This is a big deal, folks! I had been eating very little, and finally let myself fast 24 hours and it feels completely different in there. Like, more peaceful. Still wounded, kind of burns like rugburn, but starting to make more of a smiley face than crying face. Y'all, I made a poop with shape this morning, and quickly, and that hasn't happened in too long to remember! (The rug burn feeling could also be GERD revenge; I've been on omeprazole 14 years for unbearable GERD and chronic cough, but now believe this, too, could have been misdiagnosed Celiac. I read that omeprazole can contribute to leaky gut, so quit taking that noise a few days ago. I read that GERD may resolve if the celiac heals.)

I'd like to ask a question about diet... I've read so many no-nos on top of the obvious gluten stuff that it is a bit paralyzing (no oats, eggs, dairy, beans, xanthan gum, etc). My problem is that my system is so profoundly shot, I can't handle fruits or veg all that well, I think the fiber is too rough. Meat is too hard to digest as well and caused a day of bad, bad pain each time I tried it. So that leaves me with... Um, nothing? I'm not whining, I swear. I just don't know what to eat. I can do a little bit of banana and peanut butter, maybe a pack of applesauce, and do not feel like gluten-free oats or gluten-free toast have been so bad, but it's all been so bad, how would I know? I'm pretty much never hungry, so I don't need a lot of quantity right now, but if I can't have meat, fruit, or veg, or any of the gluten-free packaged foods that include all the no-no extras... What do I eat? I feel like there is an answer but in two days I can't seem to figure it out. 

Thank you all again for the kind replies. Even being able to sit up and write this at all is huge for me. I literally have forgotten my own name, my spouse's name, haven't been able to drive a car in two and a half years, weakness, seizure, wheelchair... It's been impossible, unlivable. I am not stable yet but for the first time ever, I feel hope. I felt like food was attacking me for almost 40 years, would get tense before every meal and feel bad after eating even though I adore food, and have had a migraine since I was 15 years old. Hope is something I literally never once experienced in my life until now. It's hard to describe. 

Thanks again, all!

[cristiana]

Hello again,

It really does sound as if you are onto something now, suspecting coeliac disease. 

Don't worry - no-one will bully you here to have tests done 🙂 - it's just a question I ask routinely here when new members join.  Sometimes it can be helpful because in Britain where I live there are some real advantages of getting a  formal coeliac diagnosis -  the National Health Service, our free state care, offers a lot of additional care for diagnosed coeliacs on the state.

However, your post makes me think you are not posting from the UK, rather the USA, so this would not apply to you.    I really don't blame you for putting yourself through all that testing in any case, for the reasons you give.

When I was first diagnosed I found peas, lentils, soya and oats very difficult to tolerate, they made my stomach so sore.  I didn't keep a food diary but the reaction was so obvious I soon learned not to eat them.  I can eat them all now, so perhaps in time you will be able to, as well.  One thing that was very easy on the stomach was chicken breasts slow cooked in stock in a crockpot for at least four hours so the chicken was literally falling apart, with potatoes and carrots.  Have you tried chicken cooked this way - you might be able to tolerate it?

Cristiana

 

Edited December 28, 2022 by cristiana

[LaLeoLoca]

@Christiana, thank you! I appreciate the kind comments, and explanation of why people might ask. I'm entrenched in the US, and really resenting the lackadaisical labeling and what companies can get away with. I don't have kids, and wonder if another country would ever embrace me after I get well enough? Ireland seems pretty great for celiacs, too.

I got some food down today and will try one more meal. I am in love with these YumEarth peppermint pops, they helped me a lot after lunch today because of the peppermint, and it helps with saliva. The pure encapsulations digestive enzymes are making a huge difference as well. Seriously, thank all that is good for those enzymes. 

I think I need to just slow down and be patient with everything... It's just a lot to take in basically overnight, and I don't want to screw up. Especially given how much damage could be down there, and the fact that I have POTS (and severe long covid), 16 days isn't very many compared with 38 years of being dosed with poison. Patience, my favorite!

Thanks again.

[cristiana]

We are very fortunate in the UK because in the last few years food labelling has tightened up considerably.  Sadly, though, this in part has come out of a tragedy where a young girl, Natasha Ednan-Laperouse, died of anaphalactic shock on an aircraft after eating a sandwich from Pret a Manger.  

That said, I would always say to anyone healing from coeliac in the UK to still be very careful when eating out, because I don't think a lot of the catering establishments have caught up yet.  But by and large products purchased from the major supermarkets are safe.

You are right, patience is the way forward here.   Do please come back to us anytime with any questions, and let us know how you are progressing.

Cristiana

Edited December 29, 2022 by cristiana

[knitty kitty]

@LaLeoLoca,

Thiamine deficiency can manifest as Gerd.  Gerd isn't a overproduction of digestive juices, Gerd is caused by an underproduction of digestive juices.  Thiamine is needed to make digestive enzymes and for secretion of digestive juices.  

POTS is connected to thiamine deficiency.  Many sufferers of long Covid are deficient in thiamine.

My POTS has resolved since taking high dose Thiamine as Dr. Lonsdale describes here...

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

And here...

https://www.hormonesmatter.com/post-gardasil-pots-thiamine-deficiency/

And here...

https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

And here...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/#!po=52.3148

Celiac Disease causes malabsorption of vitamins and minerals.  Checking for nutritional deficiencies is part of proper follow up care for Celiac patients.  Correcting micronutrient deficiencies will help your body heal and recover.  

Our bodies can make Glutamine.  Glutamine has been shown to use up lots of Thiamine in the process of being used.  Taking excess glutamine could precipitate a deficiency.  

Omeprazole like all PPI's can mess with the absorption of vitamins like B12, Thiamine, Vitamin C and minerals like iron, calcium and magnesium.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110863/

Migraines, weakness and seizures can also be symptoms of Thiamine deficiency.  Chronic cough could be "Sailors's asthma", yet another symptom of Thiamine deficiency.  

Symptoms of Thiamine deficiency can wax and wane because a small increase (20%) of Thiamine in the diet produces a big increase of Thiamine (80%) in the brain.  The brain is where you experience symptoms.  

Have you had a genetic test to look for any of the genes that code for Celiac?  You don't have to consume gluten for a DNA test.  

Hope this helps!

[Liquid lunch]

Hi laleoloca, you may be able to tolerate homemade milk kefir even if you can’t cope with dairy, for me it’s provided relief from my symptoms when any other food would knock me out cold, waking up exhausted in extreme pain.

Migraine seizures and autoimmune (celiac) disease are all symptoms of clinical endocannabinoid deficiency (CED), probiotics play a large part in the treatment of this. It’s a systemic malfunction of the largest neurotransmitter network in the body which is responsible for maintaining homeostasis.

It requires a multi pronged approach to manage it, I made a post about it you might find helpful..

 

[Wheatwacked]

      I counted 19 different symptoms (of the hundreds there are, google it.) that bothered me for years. The first to improve was sleep apnea starting from the first night, age 63. After a week of GFD my 30 year stint as a hard core alcoholic just ended. After a few months my prostate hypertrophy, diagnosed when I was 21 years old shrank at 63 years old. Never able to breath through my nose since childhood I am now a nosebreather. There are old posts here, from my early days gluten free where I listed them all.

     For diet I improved alot with the Haas diet THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE , even after years of gluten free I still have bouts of anorexia, so the ripe bananas was a lifesaver . Now I only eat from this list Products allowed/disallowed in the Gluten Contamination Elimination Diet

An excerpt from Haase's original paper in The American Journal of Diseases of Children page 424 published in 1924.

Quote

Carbohydrates should be vigorously avoided except as they occur in the before mentioned milk products. Saccharin should be used for all sweetening. Bread, crackers, potatoes and cereals may not be used. In extreme cases every trace of sugar except as it may occur in protein milk prepared according to Finkelstein's formula or in pot cheese, must be eliminated before success in treatment is attainedA ripe banana usually has a brown skin, or brown mottling. It must have a bland sweet taste, not acrid, and should never pucker the mouth. The number of bananas offered to a child may be quickly increased by one or two daily until the patient's demand for carbo¬ hydrate is satisfied. Then it is to be increased to the maximum which the child will take, usually from four to eight daily. Table 1.—The Typical Diet Albumin milk. Pot cheese (milk 16 oz.).. Banana. Orange. Vegetables. Gelatin. Meat.

Think of vitamins and minerals as concentrated portions of the foods you need but can't eat enough of. While there are all kinds of super supplements made from exotic ingredients, they are mostly super profit makers.      

 I claim the title Supplement King. Since increasing the B1, B3, B5 to 500 mg each at the                 beginning of summer I went from 175 lbs to 160, all belly fat. That's 2 stone?

Vitamins:

D3 250 mcg (10,000 IU)

DHEA 100 mg

Selenium  200 mcg

Chromium Picolinate 1000 mcg

Lithium Orotate 5 mg

B1 Thiamin HCL 500 mg

B3 Nicotinic Acid 500 mg

B5 d-calcium pantothenate 500 mg

B12 cyanocobalamin 1000 mcg

B complex Plus Pharma

Phosphatidyl Choline 840 mg

C Ascorbic Acid 2000 mg

 

[itarachiu]

If I remember correctly when I cut of gluten the first thing I noticed was my head pains were almost gone after just 3 days of gluten free, I wake up and I couldn't not believe that my 10 years, day by day, constant head pains is gone, then I was not that much constipated, I sometimes use to stay in the bathroom for like 2-3 hours, I was still constipated but not that much, then that sharp pain in the stomach was gone, sleep got better, my skin start to shine more, I was not that fatigue anymore, brain fog was still there but not that much.

I had problems with memory too, not as bad as you like not remembering a name but it did happen something similar and multiple times specially in the morning, I use to put the kettle on fire to make coffee and 30 seconds later I was looking AGAIN for the kettle to make a coffee, I just couldn't not remember what I was doing 30 seconds ago, it did happen multiple times until I realised that I actually have severe short memory loss. I suspect that happen more often but I didn't even realised and not just coffee related, probably other situations too.

Yes, all these diseases or health problems, or whatever you wanna call them, are the result of vitamins and nutrients deficiencies and in many cases yes is because of celiac disease, when you are deficient in all the vitamins that you need to function, depending by luck and probably genes we all experienced different symtomps but we all had something in common which is the fact that you don't feel human anymore, you feel sick, you can't function, you depend by others, you don't know what is going on and so on.

Keep a food journal, note everything you eat and the hours and how you felt after 1-2-3 hours after that meal, I just find out 2 days ago that leek cause my nausea, well leek is something green, all doctors recommend to eat green stuffs right? If you eat multiple stuffs in one meal you have to play detective role and doing foods elimination to find out what is working and what not. We are different and after years of damage to the intestine you will experience foods intolerances, most common, soy, dairy, even fruits high in fructose, or some of the greens. You know that story with an apple a day, keeps the doctor away, well... wrong! You think that you are eating healthy but that does not mean is healthy for you. Dairy for me is making sense why we can't digest it, it's the food for baby cow, it's that simple, we don't need the baby cow milk to survive, even healthy people that don't have digestive issues like celiacs, like 50% of them can't digest milk or milk related products very well or in large amounts, it's baby cow food, it is that simple.

I have 5 years of gluten free diet and I still learn things. My health is getting better but I'm still not perfect, I still experience symtomps of deficiencies.

Supplements, I wish I would take them 5 years ago when I started to gluten free diet but I didn't, I said well... I'm young, I will recover fast and I will absorb nutrients again, didn't work. Some of them maybe I will have to take them for the rest of my life, I don't know but what I do know is taking supplements in the last 3 months my health was never better than how it is right now.

[Liquid lunch]

On 12/30/2022 at 2:16 PM, itarachiu said:

You know that story with an apple a day, keeps the doctor away, well... wrong! You think that you are eating healthy but that does not mean is healthy for you. Dairy for me is making sense why we can't digest it, it's the food for baby cow, it's that simple, we don't need the baby cow milk to survive

Hi @itarachiu, you might be ok with milk kefir. It’s got bifido lactis in which can digest gluten and is responsible for maintaining the gut lining, celiacs tend to be deficient.

Also apples are not an issue for me when stewed, cooking them increases the soluble fibre which increases your bifido population if you eat 2 a day.

[Wheatwacked]

On 12/30/2022 at 9:16 AM, itarachiu said:

50% of them can't digest milk or milk related products very well or in large amounts, it's baby cow food, it is that simple.

It's because our high carb diets have killed off most of our benificial bacteria. In adults lactobacillus is the main source of lactase. It eats fiber and excretes lactase. Homemade pickles and sourkraut will rectify this. Also commercial dairies use palmitic acid food supplements and that changes the omega 6 to omega 3 ratio from 1:1 in 100% pasture fed cows to 5:1. Organic dairy is 3:1.

[LaLeoLoca]

Hi all! Thanks very much for the thoughtful advice and encouragement. I am today at exactly three weeks off gluten. Pots and pans are gone, dog food now gluten free, even got rid of the rug the dog rolls on. It's a clean sweep.

I am far from well, but feeling "a little better" now and then. I had two entire days without a migraine, for the first time since I was 15 years old (I'm now 38). I lost 20 lbs in three weeks. The GI and urine issues are still hard, but for the first time since getting first wave long covid, I have hope.

I'm feeling well enough to start "GI Detox" supplements twice a week tomorrow, as mycotoxins found my labwork can cause a lot of problems including leaky gut. I'm staying mostly off the packaged stuff and ate half a zucchini with dinner (which also included a delicious serving of Kefir!). 

I need to rest constantly. I'm paying more attention to how I feel during an in the hours after each meal, that was a great suggestion. I'm introducing new foods very, very slowly (one or two a week) and trying my best to eat as well as I can. Mostly, I lay in the dark a lot of the day and night, resting. I honestly feel a bit like a preemie baby might, like I have to regrow everything that has been damaged. 

I'm hitting my supplements religiously and have found digestive enzymes to be absolutely critical at every meal. I get three tiny meals a day, huge progress! My supplements do include many mentioned here and I appreciate the feedback.

Thanks again to everyone for just being there. I have felt very alone over the last three years (really, a lifetime of not feeling great and having no one believe me). It has meant a lot just to have people chime in and be present, these little voices to wake up to here and there. Especially over the holidays.

[cristiana]

I am so  glad to read that you are finding some improvements.   This forum means a lot to me, too, I honestly don't know where I'd have been without it these past ten years.   Do keep in touch and let us know how things are going.

Cristiana  (((hugs)))

 

Edited January 3, 2023 by cristiana

[LaLeoLoca]

@knitty kitty My multi is pure encapsulations “o.n.e. Vitamin” which has 3mg (250%) thiamine, as HCI B1. My thiamine bloodwork in October was not low (B6 was low and I take a different supplement just for that, 5880%). Is the thiamine in this multi enough, do you think? Hope it’s okay to ask. I literally have 38 bottles of supplements and meds bucket so it’s always a balancing act that changes! 

[Scott Adams]

I believe taking high thiamine level is generally safe, but not so with B6, so perhaps after your levels return to normal you may want to cut this back. I believe @knitty kitty or @Wheatwacked could provide more insight on this.

[Wheatwacked]

   If I am doing the math right 5880% is about 88 mg, well within the safe upper limit of 100 mg of supplement. According to NIH professional Health sheet the side effects mostly start at 1000 mg - 6000 mg doses for  more than a year. (66,666% to 400,000%)

In all that number we accept as 100% is really only 100% of the minimum a HEALTHY person needs. Recovery from Celiac Disease where malabsorption is the rule rather than the exception look at target somewhere in the middle between the minimum and maximum. That's where the benefits are.

 

Quote

 

Isolated vitamin B6 deficiency is uncommon; inadequate vitamin B6 status is usually associated with low concentrations of other B-complex vitamins, such as vitamin B12 and folic acid [2]. Vitamin B6 deficiency causes biochemical changes that become more obvious as the deficiency progresses...chronic administration of 1–6 g oral pyridoxine per day for 12–40 months can cause severe and progressive sensory neuropathy...   The FNB noted that although several reports show sensory neuropathy occurring at doses lower than 500 mg/day, studies in patients treated with vitamin B6 (average dose of 200 mg/day) for up to 5 years found no evidence of this effect. Based on limitations in the data on potential harms from long-term use, the FNB halved the dose used in these studies to establish a UL of 100 mg/day for adults. ULs are lower for children and adolescents based on body size. The ULs do not apply to individuals receiving vitamin B6 for medical treatment, but such individuals should be under the care of a physician.  Vitamin B6 Fact Sheet for Health Professionals                                

 

 

You don't mention Choline. It is super important.

"The body needs choline to synthesize phosphatidylcholine and sphingomyelin, two major phospholipids vital for cell membranes. Therefore, all plant and animal cells need choline to preserve their structural integrity [1,2]. In addition, choline is needed to produce acetylcholine, an important neurotransmitter for memory, mood, muscle control, and other brain and nervous system functions [1-3]. Choline also plays important roles in modulating gene expression, cell membrane signaling, lipid transport and metabolism, and early brain development" Choline Fact Sheet for Health Professionals

Here is a chart:

 

[LaLeoLoca]

@Wheatwacked I’ve never even heard of choline… Meeting with my doc today and will ask her! She’s a 

10 mg of choline are in my multi but I alleviate what you said about how we are not “normal” people, especially in early recovery. 

Had some more kefir with breakfast and the food didn’t stab inside! Major progress!! I added turmeric and black pepper (I don’t like black pepper but I will learn to love it, oh yeah).

[Wheatwacked]

It has been known about for over 100 years. Years ago they said stop eating eggs and meat in a misguided attempt to lower cholesterol, so our intake tanked. It takes 4 eggs for the minimum RDA or 10 cups of broccolli. So it is an embarrassent for the professionals to admit the mistake.

Here is a fairly good article. Could we be overlooking a potential choline crisis in the United Kingdom?  "It is well appreciated that animal foods contain more choline per unit weight than plant sources. In general, beef, eggs, fish, chicken, nuts, milk and certain plant foods such as cruciferous broccoli provide some dietary choline."

[knitty kitty]

8 hours ago, LaLeoLoca said:

@knitty kitty My multi is pure encapsulations “o.n.e. Vitamin” which has 3mg (250%) thiamine, as HCI B1. My thiamine bloodwork in October was not low.

High dose Thiamine is 500 - 2000mg per day for several months.  

Thiamine Hydrochloride, Benfotiamine, Allithiamine and Thiamax (TTFD forms) can be used in high dose Thiamine supplementation.  

There can be a "normal level" in blood work, but that level may reflect how much thiamine recently consumed in meals in the previous twenty-four hours.  It doesn't give an accurate measurement of the amount of thiamine available inside cells.  There can be a functional thiamine deficiency. High doses of thiamine is needed in order to get inside the cells and correct the dysfunction.

Thiamine deficiency affects the mitochondria and their ability to produce energy for our cells to function properly.   Without sufficient thiamine, mitochondria can produce only 2 units of ATP (energy), compared to 38 ATP with sufficient thiamine.  So, fatigue is a classic symptom of Thiamine insufficiency.  

Thiamine deficiency is related to POTS, digestive issues (gastrointestinal beriberi), asthma and sleep apnea, diabetes, epilepsy, cognitive decline (brain fog, memory loss, speech difficulties -stuttering, not remembering words), Parkinson's, Alzheimer's and other forms of dementia, and long Covid.

Here are some interesting articles....

https://pubmed.ncbi.nlm.nih.gov/28531358/

 And...

https://www.hormonesmatter.com/thiamine-connection-pots-wernickes-everything-in-between/

And...

https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency

And...

https://pubmed.ncbi.nlm.nih.gov/34337137/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4846521/

And...

https://pubmed.ncbi.nlm.nih.gov/35535731/

And....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6244527/

And...

https://pubmed.ncbi.nlm.nih.gov/2044623/

I've been taking high dose Thiamine and the improvement has been astounding.  

 

Edited January 4, 2023 by knitty kitty
Typo correction

[LaLeoLoca]

Choline was upvoted by my physician, and higher dose thiamine has also been ordered! Thank You to everyone for being such phenomenal, helpful mentors. I really can’t say how much this helps me. I was even able to walk around the house a little bit today, and take a bath too! Y’all have been so lovely. Thank you.

PS my partner is going to the store tomorrow for So Much Kefir! I blew through my one bottle and drank less yesterday, had another bad night. I can tell it made a huge difference so will be drinking a few servings a day from now on. 

[Flash1970]

Hi, so sorry to hear of your problems.  Is it possible to get a blood test where you are to test for celiac? Not invasive.  Anyway,  I literally felt awful when I stopped gluten.  Basically your body is going through withdrawals similar to alcohol.  It took a month before I felt better.  I was eating gluten free,  but packaged foods.  

About 4 months in,   I woke up and wasn't in as much pain.  Kept having brain fog.  I had severe iron deficiency.  Finally read a book called Wheat Belly Diet. Talks about how grains affect everything badly.  So I quit eating all grains.  Corn,  rice, oats e.t.c.  That let out almost every packaged gluten free food.  So started eating whole foods.  Basically follow the paleo diet with modifications.  I have to have potatoes and eggs in the morning.  Otherwise I have no energy.  Keep on the outside aisles of your grocery store.  There are lots of different grain free flours.  Only supplements I take are a super b complex,  vitamin c,  and astragalus. Astragalus supports your immune system.  

Basically,  it's trial and error.  What works for me,  may not work for you.  If something bothers you,  don't eat it obviously.  Try different diets,  I'd say eliminate grains.  But maybe you can tolerate them.  I wouldn't use any artificial sweeteners.  Honey and maple syrup are both good sweeteners. Anything artificial is not good.  

Don't expect instant results.  They don't happen usually.  Takes months.  Your body takes a long time to adjust. You can  over supplement. Try to get your nutrition and vitamins from food.  

[knitty kitty]

@LaLeoLoca,

Do keep us posted on your progress!  

I'm so glad you're feeling better!