almost a year in recovery - so many questions about to give up

[kopiq]

so im short a year of diagnosis this october. As soon as I was diagnosed i quit all gluten and relied on buckwheat and potatoes at times as my carb sources. Due to a power outage i could not eat buckwheat for a couple days, i felt better but when power was back on i ate buckwheat and felt sick, i soon cut it out of my diet.long story short I have developed psoriasis and cramping in my calves and feet, brutal cramping at that. I cut out rice and potatoes and corn and eggs as consuming them would make my psoriasis extremely itchy. I have only ate sweet poatoes and plantins for two months straight 5 to 6 times a day with no symptoms other than slow digestion of small intestine. I was also diagnosed with raynauds phenomenon recently. that's three auto immune diseases that i know about, I have constant belching from mouth even just eating chicken, Im so sick of sweet potatoes and plantains, i have no idea what to eat anymore. 

the major trigger I have had with celiac is my nervous system, I was numb to everything and as I heal i have more sensation. I got sick with flu and covid during this time and I felt physically and mentally fine even though my wife was vomiting, i could feel the body aches and chills but was numb to feeling sick to my stomach. its like celiac masked the sensation which is scary cause if I was really sick with something serious I would not know it.

Im at the point that im eating rice and potatoes even though it flares my psoriasis and causing inflammation and this numbness in my stomach genital area as my digestion get slower. I think im lacking enzymes but dont know for sure my dr has done so many blood tests for liver, pancreas, gall bladder, rheumatoid arthritis and thyroid all which she says comes back fine.

I dont know what to do anymore, am i hurting my small intestine (villi) by eating eggs, rice and corn? they do flare my itch psoriasis and cause inflammation to the point of numbness in lower stomach genital area,  but is it affecting my villi?

i need carbs, but all these grains effect my nervous system, I have so much gas from eating it affect my erections and sensations during sex, i havent had sexual arousal in almost a year, i only feel strong pressure and when it is over the pressure is gone and i have a lot of flatulence. its the strangest thing like something needs to relax down there and it relives pressure and gas.

need help, my dr dosent know what to do. do i need immune suppressants?

 

thanks.

[knitty kitty]

Welcome to the forum, @kopiq,

Have you been checked for nutritional deficiencies? Nutritional deficiencies may account for many of your symptoms.  Celiac damages the intestines which lowers our ability to absorb essential vitamins and minerals.  Have you been referred to a dietician to discuss a nutritionally dense gluten free diet? 

You are eating a high carbohydrate diet.  You're eating plenty of carbs, but an insufficient amount of B vitamins needed to turn the carbs into ATP, the energy cells use to function.  The more carbs one eats, additional Thiamine Vitamin B 1 is needed.  The RDA is based on the minimum amount needed daily to prevent disease, not the amount for optimum health.  SIBO is often a result of a high carbohydrate diet, and could explain the burping, gas produced by SIBO bacteria snacking on your extra carbs.  

Thiamine deficiency symptoms include cramping in feet and legs.  Thiamine deficiency is called Beriberi meaning "I can't, I can't!" because of the inability to walk.  Gastrointestinal Beriberi symptoms include gastroparesis (movement of food through the intestines slows down), or digestive upsets, diarrhea or constipation, abdominal pain.  The gall bladder may become dysfunctional.  The pancreas can have difficulty producing digestive enzymes and insulin.  Type Two diabetes may occur.  

Thiamine deficiency also causes paresthesia, that feeling of numbness or pins and needles.  Thiamine deficiency can cause ED and genital numbness.  Niacin B3 deficiency causes symptoms in the skin that can be mistaken for psoriasis.  

Infections like Covid require more vitamins, especially Thiamine and Vitamin C, to fight the infection.  

With malabsorption, all the vitamins and minerals are affected.  Thiamine interacts with each of the seven other B vitamins in the energy cycle.  Vitamin D can help calm the immune system.  

The Autoimmune Protocol diet can improve intestinal health.  It can starve out SIBO.  The AIP diet is very strict, but eating a diet that is easy on the digestive system allows time for it to heal.  Then more foods can be added back in with less chance of a reaction or sensitivity.  

You should definitely talk to your doctor about Thiamine deficiency soon.  If not corrected promptly,  damage may not be reversible, and could be life threatening.  

Keep us posted on your progress!

Edited July 31 by knitty kitty
Typo correction

[kopiq]

thank you, ive asked my dr to test for vitamin deficiency and shes only said vitamin d (very low 26) and b12, she says all other vitamins are not included in her blood tests only the major ones, C, D, E, B12 etc.

Ive been following the aip diet now and im going to stay on it very strict to see how it goes. im eating tons of food, romaine salads, mango, peaches, pears, cucumber, celery, zuccnini, sweet potator, plantains, ground turkey and beef and chicken. 

i eat about 4 plate filling meals a day with two to three good size snacks a day including about 3 or 4 bananas.

im still not absorbing nutrients, if i eat any sort of food with fat, I.e ground beef or fatty pork the taste of fat lingers in my mouth for 2-3 hours sometimes longer, if i bask in sun for vitamin d i feel great but then lethargic and feel strange for a day or two later, like im still absorbing it all in. even regular sweet foods like fruit the sweetness stays in mouth for hours.

ive had blood work done for gall bladder, thryroid, pancreas, liver, kindey dr says they are all fine.

i dont know what other tests i can do?

 

ive attached two pictures of the rash that broke out on my legs, feet and small one near wrist bone bright red was before treatment, second scabby one is during treatment and healing. 

https://freeimage.host/i/FrI3KZb
https://freeimage.host/i/FrI3Fwu

 

[kopiq]

also my hands are always cold, freezing cold in the winter and even cold during hot summer days. its like i have a shield. i feel warm but its not penetrating inside, my teeth chatter as well and my left index finger goes dead white when im super hungry.

all dr tests come back fine. im so hopeless.

[knitty kitty]

@kopiq, 

Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. 

The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.  

Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others.

Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones.

Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.  

Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.  

The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP.

Can your doctor refer you to a dietician or nutritionist?

[kopiq]

thank you so much. this makes so much sense. I just started taking vitamin b complex today (https://www.amazon.ca/Absorption-Methylated-Methylcobalamin-Flush-Free-Igennus/dp/B01787EPEE?rdc=1) and will continue with it to see how I feel. I also have 1000mg vit d pills but i do not absorb fats and when i first tired them i got a severe migraine for three days.

Once i no longer taste fats or foods linger in mouth and throat I will start taking the vitamin d pills.

 

thanks again, really appreciate the info, I have a drs appointment in a few weeks and will look into a dietician.