Exploratory [NDNT]

[Emanon]

Not Diagnosed
Not Tested (waiting on appointment)

Reaction fully or partially to anti allergic ? And decreases duration? or attacked?
Overweight, but body 'seems' malnutrit, almost alike cushings body shape? Complete with lesions [stretch marks last for many years???]?
Weak digestive system, slow digestion and very low fullness indicator. Considerable stress on digesting little over 2 hr period. [anemic feeling]
Vicious neurological, nerve, full body symptoms, memory and the like - main factor
>hypothetical; disproportionate lower leg muscles, mostly part used before putting foot down, implies constant testing by brain to gauge response.
[ie, learned to write [offhand] in 30s. But still have nighttime losses of memory(primarily during night?)]

Pre-supplementary deficiencies?
Muscular?
Strong immune? Persistent provocation? Massive rush and lower pace burn? Buzzing, burning sensation all over body. Almost as though can feel my brain damage in real time. Tendency inhibit front back? connection of brain. 

Activation by gluten? Yeast??

22 years, lifelong problem, neurological on onset, combine with slowed growth [malnutrit?]. Lifelong? Ataxia with rising severity. - although apparently possibility of fast(er) recovery? Overfed by parents and consequently???

A psychological sensation of brain being too small for its actual capabilities. So as though I have pseudo personalities not at all influced by gaslighting that even have different energy levels. Another is sensation like, brain has to scream to work. On a good day it can do 12 hours studying [am frankly, happy to just, work], almost compulsively, since appears fear of death functionally irrelevant. And using mental pain to control own behaviour but this maybe replacing brain functions with layers and layers of gaslighting, though not necessary post anti allergy meds. Intentionally induced complexes to stabilize psyche. 

Chart normal, drink 2L juice and score sugar normal, when serious LBP present old asian nurse chase out, saying "must have high blood sugar" or "anxiety". Consequently began to purchase supplement. Having waited 7 hours to, have a few seconds in front of doctor.

Strong tendency to get what looks like autoimmune sickness? Same sickness (strep-like), roughly fixed periods. Generally multiple times per year.

After a jumpstart experienced starvation symptoms, although stabilized now. Am thinking that, weight is created by stress of digestive or smth? Once adding Magnesium, seems like a major drop off. Been using low supplement dosage only.

Muscular and nerve weakness, low muscular growth, insomnia [at best, take hours to sleep]

IBS? Bloating and other associated problems.

There is more but am not able to distinguish symptoms from "normal life" since chronic condition.

 

Question mark indicate uncertain terminology, uncertainty factor [inclusive of, is the sky blue], and ??? often indicate "seems dumb but I refuse to exclude it.".

 

Now listing symptoms I do not have:

Short stature, bleeding, panic, appetite... Was underweight and flipped to overweight after parents abandoning prednisone treatment. Denied medical history before that time. Missing a few. As sufficiently gas lit by parents to not be aware or tend to react or notice paranoia or panic. However, am aware of suppression.

[knitty kitty]

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

Thiamine deficiency disorder describes many of your symptoms.  

[Scott Adams]

Are you still eating gluten each day? Have you had a blood test for celiac disease? I assume you posted on this forum because you suspect that you may have issues with gluten is that correct?

[Emanon]

Been trying to remove, but pan fried egg, well maybe even egg itself, result in problem, for energy levels, and imply health reduction.

Just precipitous considerable drop in energy. So much I must avoid much as possible. Can cause such serious crash, push to sleep or just numb state.

Problem ironic considering digestive performance, is obesity. Considering Japanese Black Vinegar, if maybe that improve health? Mostly seem like low stomach acidity stuff. Cheap and not really problem.

Not any medical testing, only considerable amount of problem.

[Wheatwacked]

Hi Emonon and welcome.

Yes you have malnutrition, from your symptoms most likely you have Celiac Disease. Had it since birth. Were you a colicky baby but "outgrew" it?

How soon is your appointment?

Celiac Disease causes malabsorption, add to that food avoidance and the western diet has built in defiencies.

Can I ask where you live?  42% Americans are vitamin D deficient. Most countries medical systems consider anything above 29 ng/ml as adequate, but the normal level is 80 ng/ml (same as 200 nmol/L.  The lower you are the more mental and physical problems you will have. Depression, bone aches, comprimised immune system.  Get some sun or eat salmon or take vitamin D supplement.

After years, this year I lost 20 pounds of bellyfat by taking 500 mg each of B1 Thiamin, B3 Nicotinic Acid, B5 Pantothenic Acid, B12 and Choline. All are safe to take, no side effects up to at least 3500 mg a day. Nicotinic Acid will cause flushing and itching for the first few days, but that is how you know it is letting more blood flow.

Choline deficiency can cause brain fog, memory problems, poor fat digestion (stinky poo), gall bladder and liver problems and more.

Wheat turns on fat storage mode, so as much food as you eat it primarily goes to fat instead of energy.  Taking the five vitamins above turned off fat storage.

If you start a gluten free diet, you will see improvements quickly but recovery can take months or even years, depending on how quickly you replenish your low mineral and vitamin deficiencies.  You will need to restart Gluten several weeks before any testing to avoid chance of false negative results. The cool thing about Celiac Disease is that if you don't eat gluten, you will heal and the doctors will tell you that you don't have it. Do Not Believe Them.  If you have Celiac Disease and you resume gluten you will get sick again.  There are over 200 symptoms that eating Wheat, Rye or Barley cause.

 

 

 

[Wheatwacked]

13 hours ago, Emanon said:

abandoning prednisone treatment.

I had to take 30 mg a day to function. I was taking it for two years before discovering gluten and my subsequent malnutrition was the root cause of all 19 of my symptons. It caused me Secondary Adrenal Insufficiency so I need to take maintenance dose for life. While prednisone saved my life, I would have been better off gluten free. But, after starting gluten free diet and taking vitamins to address difficiencies, I only need 5-10 mg a day for adrenal maintenance. 

[Emanon]

I did not outgrow it I think. 

Body weight correspond to intensifying symptoms of disease imo. Seem like body weight itself is symptom, as related to instantaneous volume (one meal, volume eaten) and not energy (disregards deficit).

 

Sun is good, I was covering too much so despite fair amount of walking, was not received VitaD probably.

Seem like stomach acidity low, so hoping can improve naturally, all symptoms.

 

Ah... But gluten is like death, in a very academic sense. Take it and can say goodbye to memory.

[Wheatwacked]

2 minutes ago, Emanon said:

But gluten is like death, in a very academic sense. Take it and can say goodbye to memory.

Well said

 

[knitty kitty]

@Emanon,

Welcome to the forum!

Thiamine Vitamin B 1 is necessary to turn carbohydrates into energy.  Obesity is connected to insufficient Thiamine.

Thiamine is found in meats.  Liver is a good source of thiamine.   

The body stores excess carbohydrates as fat.  If you increase your thiamine intake through food or supplements, your body will burn off the extra fat and give you more energy. 

Supplement with B Complex (all eight essential B vitamins) and extra Thiamine in the form Benfotiamine (sulbuthiamine) or Allithiamine (thiamine Tetrahydrofurfuryl disulfide. TTFD).  Supplement with Magnesium as it works with Thiamine.  Thiamine Hydrochloride is also usable if you can't find the other kinds of thiamine.  

My parents used gas-lighting on me, too.  You're not imagining things.  These Thiamine supplements will help your brain function and memory.  Thiamine and B Complex and magnesium will help get rid of peripheral neuropathy (tingling, buzzing, burning), insomnia, muscle weakness, and ataxia and neurological symptoms like brain fog and memory, and slow digestion (gastroparesis) and obesity and cramps in lower leg muscles.  

I take Apple cider vinegar, one tablespoon, in a glass of warm water before meals which helps digestive enzymes.  Black rice vinegar may work the same. 

Best wishes.  Write soon. 

[Emanon]

Considering diet characteristics, meat, salad, liver, this is most likely severe malabsorption. Solid waste is more like fine sand, or thick diarrhea, black, painful (abdominal) passing with odd, green color.

Looks like any meal in general is fairly challenging for it.

When I refer to gaslight I do not simply mean to doubt symptoms.

[knitty kitty]

The description of your bowel movements concerns me.  The green color may be bile from the gallbladder.  The sand like texture and the black color may indicate blood being passed which is worrisome.

You're not absorbing Thiamine and the B vitamins from your food.  In Celiac Disease, the small intestine gets damaged where the B vitamins are usually absorbed.  Taking B Complex and Thiamine supplements helps your body absorb more of these nutrients and allows your body to begin healing.

I'm very familiar with gas-lighting and know it's very much more than just doubting symptoms.  Gas-lighting involves control, manipulation and destruction of the recipient's mental health and personality.  

Romaine lettuce is better digested than iceberg head lettuce.  Romaine contains thiamine and less cellulose, which is difficult to digest, than iceberg lettuce.

Do you eat other veggies?  

[Emanon]

That is the implication, am doing so already. Blood loss maybe consistent. Wondering why process is so exhausting.

If this is so then it is decidedly necessary to somehow repair this damage. Assuming prolonged numb state is ataxic... Implies at least ~2-3 year at very high severity. Not including preceding periods.

Considering state of self, this may not be relatively mild. If you understand the gist.

Yes, particularly in past. Am hoping to increase but problem is, energy absorption rate seems so low, not able to regain from vegetables.

[Emanon]

Green maybe just blueberries addition or some other, blood lower not probable. Blood elsewhere not known, however can feel smth like reduced amounts of blood during process in body, yet have not seen bleeding. Only when I am 7-9 I have cases of perceptible blood iirc.

[Emanon]

On severity, I do say, it may be considerable. However, I am not aware of how to communicate the difficulty experienced in such a way to convince the family doctor. Am currently using a dosage of 120 mg Allegra, but am fairly certain prednisone may be a superior option. Considering that I have not had a sickness that appears to fall outside the range of autoimmune type for several years [no objective record], concerns about immune reduction may prove unnecessary.

While I was treated briefly as a child for serious symptoms, [i.e.; immediate development of asthma, vanish post prednisone] parents did not consider this to be a real issue. Therefore, it was halted, and all data is not within my medical record.

Further, parents remain actively combative in any effort to retrieve this information, for example "would not have this problem if more successful", and have made threats including "diagnosis of insanity", which I should add, was considered with positive glee. Therefore, it may prove challenging to acquire a professional diagnosis, particularly if it requires any appreciable funding.

[knitty kitty]

@Emanon, 

Yes, green could be blueberries.  The sandy texture could mean very slow transit time, diarrhea, high oxalates in the diet, or bleeding from high up in the digestive tract.  Bloody stools usually indicate bleeding in the lower part of the digestive tract.  

Exhaustion may be caused by anemia from iron deficiency and vitamin deficiencies.  

When I had symptoms like yours I started supplementing vitamins and minerals.  With absorption and digestion affected so severely, it's very difficult to get all the required nutrients from foods.  

I supplemented with a B Complex and with high dose Thiamine.  Thiamine in high doses (500-1500 mg/day) has beneficial effects on health.   Fatigue and dysfunction happen when the mitochondria, the energy producing organelles inside cells, don't get enough thiamine-based enzymes to use in energy production and switch off.  To get the mitochondria to turn back on, high doses of Thiamine are needed.  With mitochondria working, the cell begins to function properly again.  Benfotiamine (sulbuthiamin) has been shown in scientific studies to promote intestinal healing.

If you do have Celiac, keep in mind that it's passed on in the genes, so your parents may be suffering from Celiac Disease with less severe symptoms.  They may be suffering from vitamin deficiencies, too.  

Eating a high carbohydrate diet requires more thiamine (0.5 mg per 1000 kcal) as the amount of carbohydrates increases.  The Standard American Diet (SAD) of fast food, sweet drinks and donuts consists of way too many carbohydrates.  

I find it interesting that thiamine deficient mice commit muricide before advanced thiamine deficiency symptoms appear.  Irritability is an early symptom of thiamine deficiency.  

Thiamine, especially Benfotiamine, has been shown to lower aggression.  

Thiamine and benfotiamine counteract ultrasound-induced aggression, normalize AMPA receptor expression and plasticity markers, and reduce oxidative stress in mice

https://pubmed.ncbi.nlm.nih.gov/30817932/

And...

Thiamin deficiency induced muricide behavior in rats

https://pubmed.ncbi.nlm.nih.gov/574651/

And...

https://www.healthline.com/health/digestive-health/types-of-poop

 

Threats including "diagnosis of insanity", which I should add, was considered with positive glee.

Yes! Have definitely heard that many times before!   Was told horror stories of terrible things done to inpatients from "Nurse Hatchett" type family member.  And the shaming.  Oy vey.  I understand what you're up against.  My heart goes out to you.  Be strong.  You're not alone.  We're survivors.  

P.S.  "Sailors asthma" is a symptom of Thiamine deficiency.  Doctors often misdiagnosed it because they are not educated about vitamins and deficiency symptoms.

Edited May 13, 2023 by knitty kitty
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[Emanon]

Hypothesized mother share this gene but not father side. And this an incompatibility exist. Looking at family history.

Father has no noticeable problems and practices formidable ableism.

However choice to introduce more rice into diet stress system and possibility introduce shortage indicated.

I do not eat American style. 

[knitty kitty]

@Emanon,

Yes, rice can be a problem.  Have you tried eating a grain free diet?  

Rice and other grains have "lectins" (fiber) that is hard to digest and can irritate the digestive tract.  Removing grains, rice, and pseudo grains like quinoa gives the digestive tract a break, allowing time and environment for healing.  

Not eating dairy products and high histamine foods like eggs can also help.  

These concepts are part of the Autoimmune Protocol Diet which helps heal the digestive tract.  

 

[knitty kitty]

I just wanted to add that you only need one gene for Celiac Disease to potentially develop. 

You can inherit one Celiac gene from your mom and develop Celiac Disease.  

[Wheatwacked]

I agree with you that prednisone would ease your symptoms, you may have Adrenal Insuffiency.  But BEFORE going that route,  Start GFD.  My experience was that removing all gluten from my diet, eased all the issues equal to prednisone. Trouble is, I was on prednisone for two years before starting gluten free and as a result have permenent adrenal insufficiency.  Possibly, if you persue a medical diagnosis a short term of predinsone will get you through the Gluten Challange phase.

 

14 hours ago, Emanon said:

pan fried egg, well maybe even egg itself,

Eggs are a great source of choline and other good stuff. The frying degrades the egg protein making it hard to digest. Try hard or soft boiled. Poached is just boiled without the shell.

8 hours ago, Emanon said:

Looks like any meal in general is fairly challenging for it.

Add choline to the other B vitamins. Choline is essential for fat digestion, detoxify homocystein (protein metabolism byproduct), make acetylcholine (nerve transmission) and makes up most of the mitochondria membrane, bile digestion.

      Why is my poop green?    "...He added that certain antibiotics, prenatal vitamins or issues with bile digestion could also cause your poop to turn green."

[Wheatwacked]

I know it is overwhelming. We throw vitamin and minerals at you like fast balls in baseball. Start one, see how it goes and add the next.  The vitamin and minerals will improve your compromised immune system, even while eating gluten and waiting for doctors.

     Rice and Thiamine Deficiency      "When the technology for polishing rice became available, people took to eating white rice in preference to brown rice, but that process removed thiamine, causing beriberi, or thiamine deficiency, in many people, as well as heart and nerve diseases."

 

[Emanon]

I understand.

Not overwhelming.

Seem like nothing working at optimum. Immune function is good; minus FF part.

I should explain throughout life constant battle to prevent immune system from killing me. Despite all efforts to self sabotage, immune system even near death test normal.

Am moving to GFD, mostly not have much/any to start with for long time before researching. Difficult to prevent exposure but am doing so.

As consequence simply unable to test positive if tested.

Before the first post started on such supplements. Though lacking of ones such as choline specific. 

Black Vinegar aid digestion. Finally reach level of unhealthy, sufficient to produce diarrhea.

[Scott Adams]

Regarding the black vinegar, just make sure it isn't vinegar that is fermented with wheat or barley. Distilled vinegars should be safe.

[Russ H]

Emanon, you need to have a blood test for coeliac disease. For this test to be accurate, you need to eat gluten every day for 6 weeks prior to the test. Can you get your doctor to give you a blood test? The test is for IgA tTG2 antibodies - it is an easy test to do.

[Emanon]

I understand that. However at the moment simply digesting a solid meal, not even glutenous, can take me down for the better part of a day.

Your "easy test" is asking for 42 days of Ataxia during course season.

It is certainly quite easy if I don't mind failing out of university.

[Russ H]

I understand now. When you say ataxia, you mean that your have difficulty co-ordinating your muscle movements (such as difficulties with speech or walking)?