Clueless where to start

[Marianne82]

My gut always hurts, I'm kind of used to that. 

I also had psychiatric symptoms though. Psychosis, emotions that were allover the place (hourly fluctations, going from rage to fear to hypomania to shame), traumatic flashbacks, nightmares, suicidal feelings, extreme PMS. Even when not floridly psychotic, I had constant ideas of reference and the like. At least in periods when I drank a lot of milk it was like all that. 

Nearly immediately after I quit milk and minimized gluten/egg/soy/additives, my mind stabilized. It is hard to explain. I'm obviously anxious now, in response to PMS and blood test (and perhaps food, I doubted about something I was given). But it is a response to something, not random. And it's controllable, I'm not doing anything odd here.  In a period with high milk consumption, I would be in hospital now. My non-PMS-baseline is so much better now. 

They never checked me. Because of the mental health symptoms, they refused to believe me about any and every physical complaint. GP will send me to gut/stomach specialist soon. I'm really not sure...I think it is partly the neglected dairy/gluten intolerance. I've googled everything from H. Pylori and peptic ulcers to tropical sprue (I've been in a tropical area years before, with a severe GI infection and severe weight loss...it causes malabsorption as well, of B12/folate/iron/fat). Or perhaps my fragile GI system just didn't like the loads-of-meat-and-veggies-diet. 

No clue. Hope the doc finds something. 

Thanks for your prayers. That is kind. 

 

[Marianne82]

Tried to post link, isnt working.

[knitty kitty]

@Marianne82,

Not a doctor, not diagnosing.  I base this on personal experience.  

I had severe Thiamine deficiency that was not recognized by my doctors.  Doctors see Thiamine deficiency as a result of alcoholism.  Because I insisted I did not drink alcohol, they wrote me off as crazy. 

Thiamine deficiency can be caused by prescription medications, including SSRIs and MAOIs, anti-anxiety meds, anti-diabetic meds, anti-high blood pressure meds, thiazide diuretics and more. 

Thiamine deficiency is also caused by malabsorption present with inflammation in dairy allergy and Celiac Disease.  

You said "In my adult life another severe trauma happened, as well as repeated infections and antibiotic courses, and bad responses to psychiatric meds. And I had my child. After all this, I started to develop more and more symptoms. Physical ones, like fatigue, IBS, hormonal problems. Psychiatric ones, like emotional volatility, anxiety, depression, psychosis, problems with executive function, concentration, brain fog. I was diagnosed schizophrenia, ADHD, borderline....something different every time."

Physical and Emotional Trauma use up lots of Thiamine and can result in Thiamine deficiency.  Antibiotics and vaccines can cause Thiamine deficiency.  Repeated infections is a sign of Thiamine deficiency.  Psychiatric medications (as well as other prescription medications) can cause thiamine deficiency.  Pregnancy uses up lots of Thiamine leaving the mother thiamine deficient.  

Fatigue is a symptom of Thiamine deficiency.  Hormonal problems are related to thiamine deficiency.  IBS is frequently unrecognized Gastrointestinal Beriberi, Thiamine deficiency in the gastrointestinal tract.  Thiamine improves symptoms of PMS.  Thrombosis occurs in Thiamine deficiency.

The psychiatric symptoms you listed occur in Thiamine deficiency.  Anxiety, depression, and emotional lability are symptoms of Thiamine deficiency.  Brain fog, memory, concentration and focus problems, executive function problems, and judgement impairment are all symptoms of Thiamine deficiency in the brain.

A severe stage of Thiamine deficiency is called Wernicke's Encephalopathy.  Bright spots in the brain show Wernicke's Encephalopathy damage in the brain on MRIs.

High doses of Thiamine are needed to reverse Wernicke's Encephalopathy and Thiamine Deficiency.

Ask your doctor to check for thiamine deficiency blood tests.  Ask your doctor to give you an IV of Thiamine or a shot of Thiamine Hydrochloride.  Thiamine is safe and nontoxic.  The World Health Organization says a Thiamine deficiency can be diagnosed if improvement is seen after giving a minimum of 500 mg Thiamine Hydrochloride for several days.  If improvement is seen, thiamine should be continued for several months.  Some people see greater improvement with higher doses (1500 - 2000 mg per day) of Thiamine Hydrochloride.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD) is another form of thiamine that will cross the blood brain barrier and restore brain function.  Thiamine Hydrochloride tablets are available over the counter. TTFD is available over the counter under the name of Benfotiamine and Allithiamine and Thiamax.

Since my doctors would not take me seriously, I researched on my own.  I've a university degree in microbiology, so I was familiar with the concept of Thiamine and cellular function.  I studied Dr. Derrick Lonsdale and Dr. Chandler Marrs' book "Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition".

I took high dose Thiamine as per Dr. Lonsdale at home.  I noticed improvements within minutes.  I have continued taking high dose Thiamine for several years.  It's made a dramatic improvement in my life. 

It's a crying shame doctors don't recognize the need for and the importance of Thiamine in cellular function in the body and the brain.  The brain is not separate from the body.  If you give the essential vitamins and minerals, the body can repair itself.  You are not sick because you are deficient in pharmaceuticals, you are sick because you are deficient in vitamins and minerals your body needs for health.  

I hope this helps.

For more of my story, read my blog.

[Marianne82]

Thanks! This may be a clue. 

I was just at the GP (not my own). Useless. I pushed for B12 and folate to be checked. This he wanted to do. And he prescribed iron pills and some sort of fiber to not be constipated. Nothing else. I will take the natural variants of those. He thought all the other problems were probably a result of my psychiatric symptoms and the meds I took (which may well play a role). 

I will call my own doc tomorrow to see if she wants to check my thiamine and a few other deficiencies. If not, I will supplement it by myself. I also hope to see a naturopath doctor soon, whom I hope is more open to this kind of stuff. 

I started to take liquid iron/b-vitamins/vitamine c. Thiamine as well. I took quite a high dose, but not nearly as much as you mentioned. My gut didn't like it at all. I have not been able to eat much after. But I think my brain did like it. 

I will go on the look-out for better thiamine, to give it a try. 

It is great that you saw such improvement. 

[Marianne82]

I found a bloodtest online, with all sorts of vitamins and minerals. It is expensive, but I think it is worth it. And a lot better than begging doctors for help endlessly. I could drop dead in front of their eyes, and they would still try to explain to me it is in my head. 

[trents]

2 hours ago, Marianne82 said:

I found a bloodtest online, with all sorts of vitamins and minerals. It is expensive, but I think it is worth it. And a lot better than begging doctors for help endlessly. I could drop dead in front of their eyes, and they would still try to explain to me it is in my head. 

Can you link the site?

[Marianne82]

It is a Dutch company. I haven't looked into them well yet. 

www.bloodtesting.nl/vitaminen-en-mineralen-best.nl

[knitty kitty]

@Marianne82,

Our bodies can absorb about 300 mg of Thiamine in about three hours, so spread your doses out over the course of the day.  I usually take mine at the beginning of meals.  

Yeah, I took a very high dose of Thiamine Hydrochloride (1500 mg) once and got a tummy ache.  Taking thiamine with food helps.  Sorry that happened to you.  

Do be aware that if you are taking supplements before a blood test for vitamin deficiencies, the supplements in your blood stream can cause "normal" blood levels.  To find deficiencies, don't take vitamins beforehand.  The tests will pick up on the vitamins you've taken.  

Blood tests aren't an accurate measurement of vitamins stored inside organs and tissues where they are used.  The brain keeps a certain level of vitamins in the blood stream to supply important organs like the brain and heart, while other organs have little stored vitamins to use.

Keep us posted on your progress!

[Marianne82]

I am too tired today to do much, but I decided to carefully start supplementing iron and b-vitamines in tiny doses. I respond to everything now. Something I read about, and am frightened to have, is mast cell activation syndrome. I really don't know, am searching. 

I respond with GI problems and "mind" problems to almost everything now. I just had covid, and this made it a lot worse. I don't dare get vaccinated either, because I overreact too all meds and vaccines too. People think I'm exaggerating, but I'm not. Even a cup of herbal tea can make me sick. The things I need to recover, are also the things I respond badly too. 

[Marianne82]

Ah, never mind. I'm getting scared, because I have a billion weird responses, from edema to gut issues to hair falling out to exhaustion...and my doc thinks it is no problem. So I'm searching for myself. Which probably isn't helping much. 

[knitty kitty]

@Marianne82,

I've been in the situation where seemingly everything caused some sort of reaction.  

I followed the Autoimmune Protocol Diet.  I ate small grass fed ground beef patties and a steamed vegetable like carrots, okra, or green beans.  I ate very small portions, every two to three hours if hungry.  

I did not eat sweet potatoes because sweet potatoes contain an enzyme (thiaminase) that breaks down Thiamine in the body, making thiamine unusable.  

I did not eat fruits.  Many fruits contain high levels of histamine.  The more ripe a fruit is, the more histamine it contains.  Bananas that are closer to being green have less histamine than a fully ripened banana with black spots on the peel.  

(Bananas available today are a different strain of banana than was available when a banana diet was recommended by doctors for Celiac Disease.  The Banana Blight, a black mold, killed off all the banana trees that produced the bananas I grew up with.  The bananas available now have more fructose.)

Some fruits just naturally contain high histamine levels.  Strawberries, avocado, and citrus fruits like oranges, grapefruit and lemons have high histamine levels.  

I also suspected Fructose Malabsorption Syndrome.  Our bodies can only digest small amounts of fructose at a time.  The remaining undigested fructose in our intestines can cause irritation, gas and bloating.

Additionally, some bacteria and yeasts in our digestive tract can ferment fructose, the naturally occurring sugar found in fruits, changing fructose into alcohol that we can absorb through the intestines.  This is called Auto-Brewery Syndrome.  It's basically getting drunk off of undigested fructose which is fermented in the intestines and turned into alcohol.  (No wonder my doctors kept asking if I drank alcohol and thought I was lying.  Heavy sigh.)

https://pubmed.ncbi.nlm.nih.gov/30020718/

I chose not to eat anything with High Fructose Corn Syrup (HFCS).  (Many gluten free facsimile foods use HFCS as a sweetener.)  HFCS is also capable of being fermented in the intestines.

I was able to tolerate fresh dates.  Dates are low in histamine and low in fructose, plus they have water soluble fiber which is great for the digestive tract.  

In Histamine Intolerance, the body can't keep up with clearing the amount of histamine our bodies make as part of the inflammation process.  Additional histamine from high histamine foods we eat only compounds the matter.   I get the visual image of Lucy and Ethyl in the chocolate factory...

https://m.youtube.com/watch?v=AnHiAWlrYQc

By lowering the amount of high histamine foods we eat, we are helping our bodies cope.  We also can help our bodies cope by taking vitamins (thiamine B1,  Vitamin C, Pyridoxine B6, Cobalamine B12, copper and zinc) which make an enzyme called Diamine Oxidase (DAO).  Supplements of DAO made from pork kidneys is available over the counter.  (I won't take these as I cannot eat pork.)

You said "edema to gut issues to hair falling out to exhaustion..."

Edema is common in Thiamine deficiency.  Exhaustion is a symptom of Thiamine deficiency.  Hair loss is a symptom of Thiamine deficiency.  PMS symptoms are relieved by Thiamine supplementation.  Altered mental health, cognition, and memory are symptoms of Thiamine deficiency. 

I do hope your naturopath will be more open to thiamine supplementation, perhaps be able to give an injection or IV of Thiamine.  

High dose Thiamine, a B Complex, Vitamin C, magnesium and Vitamin D will help regulate your immune response and lower your histamine levels.  

I hope you feel better.  Please keep us posted on your progress! 

[Judith M]

On 1/25/2023 at 11:04 AM, Marianne82 said:

Ah, never mind. I'm getting scared, because I have a billion weird responses, from edema to gut issues to hair falling out to exhaustion...and my doc thinks it is no problem. So I'm searching for myself. Which probably isn't helping much. 

Have you had your vitamin D checked. Mine was so low that I had breathing problems and no energy. My hair was falling out also. I took 10,000iu every second day (prescription) for 2 months. Finally started getting better. Once being diagnosed Celiac and avoiding gluten started to gain weight and get better. I take 5000 iu of vitamin D daily now. Hope you feel better.

[Wheatwacked]

On 1/24/2023 at 6:59 AM, Marianne82 said:

I could drop dead in front of their eyes, and they would still try to explain to me it is in my head. 

Sad. But probably true.

Perhaps go back to your ADD diet which you said you did well on but leave out the rice (carbohydrates)

Dr Haas used very ripe bananas because they are easily digested. Less ripe bananas, starchier, cause a smaller glucose spike, important in diabetes, but not important when dealing with the malnutrition. Almost every symptom you have described along the way has been associated with Celiac. What are the chances of so many different diseases all at the same time if not for gluten?

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. NEW YORK

"Pot cheese (milk 16 oz.).. Banana. Orange. Vegetables. Gelatin. Meat."

"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 attained. There is one exception, i. e., sucrose as it occurs in the extremely ripe banana. This is tolerated perfectly, and herein lies the crux of the entire matter. Heretofore it has been impossible in the severe cases to give any carbohydrate without damage, whereas banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. An under-ripe banana is a starch, an over-ripe banana is a sucrose with an invert sugar,2 and like most sugars easily assimilated. A 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 carbohydrate is satisfied. In the earlier cases only a small quantity was used, and the number increased slowly. With added experience this was found to be unnecessary, and rapid increase in number was made so that in a recent case an infant, aged 24 months, took sixteen bananas daily."

I was bedridden for two years before starting GFD, 10,000 IU a day of vitamin D. Low D is very much responsible for our autoimmune and mental health. 

Vitamin D and Depression: Where is all the Sunshine?

Vitamin D and the Immune System   Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. As immune cells in autoimmune diseases are responsive to the ameliorative effects of vitamin D, the beneficial effects of supplementing vitamin D deficient individuals with autoimmune disease may extend beyond the effects on bone and calcium homeostasis.

 

[Marianne82]

Thanks for thinking with me. 

I was so overwhelmed with everything, that I didn't know where to start. 

I got off the internet. And meticuously stuck to gluten free/dairy free/soy free/egg free the last weeks. And minimal sugar/additives. My GI symptoms calmed down a lot. I did a tiny gluten challenge (ate a gluten free dairy free pancake in a restaurant, which was cooked in a place where they also cooked gluten pancakes...I had an immediate and clear response). I did the same with a glass of soy milk, with the same response. 

My energy is better, my concentration. My PMS was still shitty. But a breeze as compared to other months. More like normal women's PMS. My mental health is still troubling me, though not as bad as before. But there has been a lot of trauma and loss, that I'm starting to process. As well as damage from medication. So that is not strange. 

I had a naturopath doctor prescribe several vitamins and supplements, also vit D and B vitamins. He is researching more now for me. He is sure of the gluten connection. 

My psychiatrist STILL holds on to the view, that there is no proven link between diet and psychiatric problems. And says he never sees patients with food intolerances and deficiencies, insisting they do not come to the psychiatrist, but rather to a different medical specialists (or...perhaps...you see them all the time, but you never check them for it...and needlessly drug them up all their lives?!?). 

I'm a bit more hopeful, and will experiment with all your advices now. Getting off the internet again now... it was rather peaceful without.

 

 

[Marianne82]

I did another test, to prove it. 

I saw my psychiatrist yesterday. He concluded I was very stable, and not depressed or anxious or psychotic. We had a nice chat, a laugh. I'm on dairyfree keto now, which is the best diet for me. 

I had one single cheat evening meal yesterday. Went out with kid to town and we binged on everything good. From soft cheeses to butter, from apple pie to beer. Had a great dinner, with laughs and joy. 

I made it until home. Barely. Kid went to granddad, to be sure. 

Then I got sick (GI problems, runny nose, lot of mucus and a little difficulty breathing). And very, very, very emotionally upset. This is the major symptom. I'm still feeling like crap. Very bad. My stomach is fine-ish again. Not great, but good enough. My mind is not. I feel so horribly depressed, that I want to die and thought of applying for euthanasia. I almost wrote my family a goodbye letter. All my mistakes were in front of my eyes. I'm crying. I'm fearful. I am angry and picked a fight with someone (who has been real nasty with me for a long time, so there was a reason, but fighting does not help strategically). I became impulsive, lashing out. There is magical thinking. Feeling rage and revenge feelings towards all the psychiatrists who denied this. 

Right now I'm reporting my responses to my psychiatrist on e-mail. 

It is like a werewolf thing. If I have milk and gluten, I immediately switch into an emotional-rollercoaster-person. If I skip them, and especially add keto, people tell me I am sweet, calm, joyful and polite. 

Hope it doesn't last to long. This is no fun. For me, and people around me. 

Back on my stupidly limited diet now. 

[Wheatwacked]

On 2/16/2023 at 4:06 AM, Marianne82 said:

My psychiatrist STILL holds on to the view, that there is no proven link between diet and psychiatric problems.

Watch this video. Dr. Amen's 10 Simple Food Rules to Guarantee a Healthier Life

[Wheatwacked]

10 hours ago, Marianne82 said:

Then I got sick (GI problems, runny nose, lot of mucus and a little difficulty breathing).

Same symptoms I would get until my vitamin D got to 80 ng/ml. But it took me from 2015 to 2020 taking 10,000 IU a day to get there.