Help! I feel like I'm losing my mind!

[TT0202]

Hello, im a 20yo woman living in the usa and ive been noticing some heavy changes in my body these past 2 months that no doctors have given me any answers for. 

to start off with, almost 2 months ago, within the span of 3 weeks i had gone from 118lbs down to 96lbs! I found this weird, because i can literally eat my whole family out of the house. i had started a job doing 3rd shift and at the time it seemed a little okay because i was hella stressed and not sleeping good, and my eating habits became a little unhealthy. eating honeybuns and burgers with blue Gatorade was the most i could manage at the time, but that was 2 months ago, and now my symptoms have worsened, like, a LOT. i changed up my eating habits, after seeing my family doctor, who told me my blood was fine and that (other than my weight loss) i was perfectly healthy.  i started eating whole grain, oatmeal, fruits and veggies, just good eating decisions in my opinion, but my weight didnt go up at all and continued to stay down. along with all of that i also had terrible bowel movements. they were never solid, and even the ones that seemed more solid, came with lots of mucus and yellow foam. my mom and brother have symptoms of ibs, but this is different. My newer symptoms include:

cloudy urine, and weird discharge, but no yeast infection going on or bacteria. (i had multiple urinalysis' done but nothing came up)

strange fatty stools and small amounts of fresh blood. liquid diarrhea, mucusy bowel movements, and white flecks along with black flecks. (I dont have worms, and when the doctor put a finger up my butt they said there was no detected blood either)

bad acne, along with a few months of what i would consider dermatitis rashes on my butt, lips, hands, and weird rashes on the inside of my leg which resembled wingworm but it wasnt that either. 

tender lymph nodes in my neck and armpit, not swollen though, and a sore neck.

uncomfortable stomach, along with bloating, but there was no inflammation upon investigation.

weird eating habits, like one day im starving, and the next i feel nauseous after two bites.

a hard time falling asleep and staying asleep.

horrible joint pain, like when i wake up i feel like i was lifting weights the day before, mainly in my arms and wrists, and sometimes my knees.

back pain, like so bad my gluten-free has to lift me out of bed!

Heavy mood swings! i get irritated at the smallest things, cry at the dumbest things, and i cant focus that well either. i would describe it as brain fog, and its the most noticeable while im driving. i feel like i zone out a lot, to the point im seeing cross-eyed, and my eyes feel so sensitive lately too. my memory is getting a little bad too ive noticed. i started forgetting how to spell simple words and when i think of something it leaves me in a second. its not always that bad, but i definitely have some serious off days.

(i smoke btw) but i stopped recently because i wouldnt get high but my heart would start racing uncontrollably to the point i would almost pass out, even though i know what greening out is, and ive done it before, this is different! this makes me feel like im actually having heart problems, and my normal panic attack relivers don't work including breathing exercises. food doesnt help either it would just come in waves and waves where i would be okay and then woosh my heart  was beating so fast i cant even hear my own thoughts.

chills too, really bad chills. my fingers and feet feel like ice, even though i can feel a pulse in my wrist. and at night i feel this crawling sensation all over me, like a spider or something, but its nothing!

ive had an issue for a while where if im sitting, my feet start to get a purplish tinge to them and i can see all my veins, especially when im having a bowel movement. my feet feel really cold too and my legs shake a lot after. now its happening even when im standing sometimes or just laying down.

my chest hurts sometimes like little cold pokes and i feel like i cant get enough air even when i take deep breaths. im having weird heart palpitations randomly, which i thought could be stress or anxiety, but there are no stressors in half the situations.

my period is acting a little weird too. there is a lot of blood and its dark, but not dark enough to be considered unhealthy, just darker than what im used too, and so are any cuts i get as well, but the doctors told me 3 different times this month that my blood was fine!!! 

the only result i got after going to the hospital was a benign cyst in my left kidney, which they told me not to worry about, but ive also had issues with cysts for a while, but nothing came back from getting my adrenals checked.

constant mouth ulcers but they dont stay forever. rn i have a what looks like a large whitehead on my gums under my tongue and it huts kinda.

i feel constantly dizzy and out of breath, and just tired a lot even though im not actively doing much. its also a little hard to finish my bowel movements not because its super painful just really exhausting. i also get headaches quite a bit but im not sure if its just caffeine headaches or because of overstimulation to light and sound. 

i haven't puked at all, surprisingly, but i do get nauseous especially after eating or in car rides.

i decided to go on a gluten free diet, which seemed to help a little. i started having solid bowel movements and my urine wasnt cloudy, but my mood swings stayed and my weight didnt really go up. im sure i was still getting a little bit of gluten here and there, but i had to go back on a gluten diet in hopes of being tested for celiac, and my weight started dropping again, but after that the symptoms just got worse. than they were before. im going to a gi in april but im worried thats so far away. i keep telling myself i will be fine but its hard to think that way when i dont feel fine.

that being noted, i have been eating this whole time, even making myself sick at the end of the day just to prove a point, because my parents believe im not eating and milking this whole experience just for attention or something idk honestly. all i know is that i dont feel like myself. almost everyday now i feel like im outside of my body, not really in control of what i say or do, but they dont really seem to think its critical. i start my job again soon, a different one ive had in the past, not 3rd shift this time, and im scared. im scared to drive and im scared to work 8 hours doing physical work when i already struggle to lift small things on my own. my gluten-free is worried but she cant really help me like they can. im thinking about applying for my own insurance and maybe moving out soon to live with my brother, because they have done nothing but make me believe im crazy and that im anorexic and a hypochondriac. i want to be succesful in my life, but this makes me feel like im probably not going to see that ever. i have it in the back of my head that whatever is going on is just slowly chipping away at me and i cant do anything but wait and wait until its too late. im worried about the damage, and the constant phone calls of doctors telling me nothing is wrong. can stress do this much? ive been out of work for almost 2 months now, and i even WANT to believe im okay but that doesnt even work now. my parents think its a mental issue, but i havent struggled with anxiety or panic attacks until recently, although i have been depressed for a while, but im a binge eater when im sad, and this is just weird. ive never felt like this before, no matter how stressed i was. im hoping my next few tests when i get them show some results, but at this point im not hopeful they will.

 

[trents]

Welcome to the forum, TT0202!

Many of your symptoms are classic for celiac disease and many others I'm guessing are related to vitamin and mineral deficiencies. Celiac disease damages the villi of the small bowel. Consumption of gluten triggers an autoimmune response that causes the body to attach the villi that line the small bowel. This constant inflammation wears the villi down over time and often significantly reduces the efficiency with which vitamins and minerals are absorbed from the food we eat.

You really do need to get tested for celiac disease. Typically, the first stage of diagnosis is a blood antibody test. But according to the Mayo clinic you should be eating an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks before the blood draw. Otherwise, the test may produce false negatives.

Are you currently taking any vitamin and mineral supplements? If not, you should be. Get an adult multi and a B-complex. Add 5000IU of D3 to that. Make sure they are gluten free. A good choice for this would be Costco's Nature Made line.

Edited March 4, 2022 by trents

[TT0202]

Do you think my week in half gluten free diet will effect testing at all?

[Scott Adams]

Unfortunately if you've been gluten-free for that long it would be best to restart eating gluten again daily for at least 6 weeks, then get tested, but that is only if you require a formal diagnosis to stay on a gluten-free diet. If you feel like the diet is working, and your many symptoms are improving, it is not required to get a confirmation. Also, you may not have celiac disease (around 1% do), but could have non-celiac gluten sensitivity (around 10% do), and there is not test for NCGS. The outcome would be the same for either--a gluten-free diet for life.

Given how bad your symptoms are, you need to ask yourself whether or not a formal diagnosis makes sense for you to pursue.

[Wheatwacked]

Your post sounds like something I might have written myself a few years ago. With all your symptoms it amazes me (but doesn't surprise me!) that multiple doctors find nothing wrong. Read the "Gluten Centric Culture". It will help you realize that those who say "it's in your head" are wrong.

11 hours ago, TT0202 said:

i decided to go on a gluten free diet, which seemed to help a little. i started having solid bowel movements and my urine wasnt cloudy

You don't need a doctor to tell you that what you eat is hurting you. An official diagnosis by a doctor may help people take you seriously. It seems to take six months to two years gluten free to heal your intestine. But as you saw, it only takes a few days to start feeling the benefits of GFD. The GFD removes the toxins that cause autoimmune damage to your villi causing malabsorption of essential vitamins and minerals and can eventually result in overt malnutrition. 

You can choose only healthy foods, but that does not mean you are getting all the essentials you need and malabsorption means to need more than healthy people. My experience is the quicker you replenish and build up reserves of the essential vitamins and minerals, the faster you feel better. Here are some of the vitamins and minerals that has helped me most. Start here and you will identify more as your brain fog improves and you start to feel better. Whether you continue eating gluten so you can get tested or not, they will start to help.

1000 mg Thiamine (B1) energy

250 mcg vitamin D3 (10,000 IU) mood and moderates autoimmune overreaction.

840 mg Phosphatidyl Choline- used for new cell structure. Most Americans do not eat enough anyway.

1-3 sheets of organic nori for the RDA of iodine - helped my muscle tone.

- For practical reasons, replacing thiamine as an initial test may be most feasible. If the patient responds to treatment, it is safe to assume that a measure of thiamine deficiency was responsible for the condition.   https://www.medscape.com/answers/116930-91237/how-is-beriberi-thiamine-deficiency-diagnosed

 

10 hours ago, trents said:

Many of your symptoms are classic for celiac disease and many others I'm guessing are related to vitamin and mineral deficiencies.

That is it in a nutshell. 

 

[knitty kitty]

@TT0202,

Welcome to the forum!  Sorry you're feeling so poorly.  I understand what you're going through.  My family thought the same about me, too.  I struggled for years trying to get to the cause of my similar symptoms.  But there's hope! 

Celiac Disease causes malabsorption resulting in vitamin and mineral deficiencies.  Doctors are not as knowledgeable about vitamins and nutrition as they need to be, and deficiency symptoms are often overlooked or ignored.  

There's eight B vitamins and many of their deficiency symptoms overlap because they all work together.  

Have you been checked for B12 deficiency?  Early Vitamin B12 deficiency can cause the neuropsychiatric symptoms you referred to (the out of body feeling, mood swings, depression), even before Vitamin B12 deficiency causes overt anemia.  B12 deficiency can cause fatigue, breathlessness, mouth sores, headaches, and light sensitivity.  

Thiamine can also cause similar neuropsychiatric changes like depression, insomnia, emotional lability, that out of body feeling, and poor memory among others.

Thiamine (Vitamin B1) can cause the changes in appetite (anorexia, or conversely, a ravenous appetite, feeling full quickly, and nausea), fatigue, heart palpitations or tachycardia, and changes in blood pressure among other symptoms.  Thiamine is needed to clear your system of oxalates, which if not cleared, can result in cloudy urine. 

Thiamine deficiency can cause the light sensitivity and crossed eyes you're experiencing.

Thiamine deficiency can cause Gastrointestinal Beriberi, which can cause the gastrointestinal distress you're experiencing.  Thiamine deficiency can also be part of the cause of greening out. 

Thiamine, Niacin (Vitamin B3), B6 (pyridoxine), and B12 deficiencies can all cause the tingly spider-crawling feelings (peripheral neuropathy), chills, rashes and panic attacks, too.  Thiamine and B12 are needed for oxygenation of blood.  Blood not fully oxygenated will appear darker in color.

A quick field test for thiamine deficiency is the inability or difficulty in rising from a squat.  

Vitamin D helps regulate the immune system.  Lack of Vitamin D can cause your immune system to work overtime and swollen lymph nodes can be the result.  Vitamin D deficiency can cause the muscle weakness and joint pain you described.  

Celiac Disease is inherited.  It is possible that your mother's and brother's IBS is actually misdiagnosed Celiac Disease.  This misdiagnosis is common.  

Since you've been having difficulty on the Gluten Containing diet, you may want to get a DNA test which looks for the most common Celiac genes.  There are other less common Celiac genes (not all genes for Celiac Disease have been identified) but having a gene for Celiac Disease may prompt your doctors to take you more seriously.  

Do get checked for Celiac Disease.  A blood test checks for antibodies your body makes against gluten, but you need to be on a Gluten containing diet for six to eight weeks.  An endoscopy with biopsy of your small intestine can be done to look for microscopic damage caused by Celiac Disease.  Perhaps if you call your doctor's office they can move your appointment up or put you on the list to call if someone cancels their appointment.  

Do NOT start supplementing with vitamins before being tested for deficiencies because the vitamins will mask any deficiencies you have.  

Hang in there!  You're on the right track!  

Hope this helps!

[TT0202]

18 minutes ago, knitty kitty said:

@TT0202,

Welcome to the forum!  Sorry you're feeling so poorly.  I understand what you're going through.  My family thought the same about me, too.  I struggled for years trying to get to the cause of my similar symptoms.  But there's hope! 

Celiac Disease causes malabsorption resulting in vitamin and mineral deficiencies.  Doctors are not as knowledgeable about vitamins and nutrition as they need to be, and deficiency symptoms are often overlooked or ignored.  

There's eight B vitamins and many of their deficiency symptoms overlap because they all work together.  

Have you been checked for B12 deficiency?  Early Vitamin B12 deficiency can cause the neuropsychiatric symptoms you referred to (the out of body feeling, mood swings, depression), even before Vitamin B12 deficiency causes overt anemia.  B12 deficiency can cause fatigue, breathlessness, mouth sores, headaches, and light sensitivity.  

Thiamine can also cause similar neuropsychiatric changes like depression, insomnia, emotional lability, that out of body feeling, and poor memory among others.

Thiamine (Vitamin B1) can cause the changes in appetite (anorexia, or conversely, a ravenous appetite, feeling full quickly, and nausea), fatigue, heart palpitations or tachycardia, and changes in blood pressure among other symptoms.  Thiamine is needed to clear your system of oxalates, which if not cleared, can result in cloudy urine. 

Thiamine deficiency can cause the light sensitivity and crossed eyes you're experiencing.

Thiamine deficiency can cause Gastrointestinal Beriberi, which can cause the gastrointestinal distress you're experiencing.  Thiamine deficiency can also be part of the cause of greening out. 

Thiamine, Niacin (Vitamin B3), B6 (pyridoxine), and B12 deficiencies can all cause the tingly spider-crawling feelings (peripheral neuropathy), chills, rashes and panic attacks, too.  Thiamine and B12 are needed for oxygenation of blood.  Blood not fully oxygenated will appear darker in color.

A quick field test for thiamine deficiency is the inability or difficulty in rising from a squat.  

Vitamin D helps regulate the immune system.  Lack of Vitamin D can cause your immune system to work overtime and swollen lymph nodes can be the result.  Vitamin D deficiency can cause the muscle weakness and joint pain you described.  

Celiac Disease is inherited.  It is possible that your mother's and brother's IBS is actually misdiagnosed Celiac Disease.  This misdiagnosis is common.  

Since you've been having difficulty on the Gluten Containing diet, you may want to get a DNA test which looks for the most common Celiac genes.  There are other less common Celiac genes (not all genes for Celiac Disease have been identified) but having a gene for Celiac Disease may prompt your doctors to take you more seriously.  

Do get checked for Celiac Disease.  A blood test checks for antibodies your body makes against gluten, but you need to be on a Gluten containing diet for six to eight weeks.  An endoscopy with biopsy of your small intestine can be done to look for microscopic damage caused by Celiac Disease.  Perhaps if you call your doctor's office they can move your appointment up or put you on the list to call if someone cancels their appointment.  

Do NOT start supplementing with vitamins before being tested for deficiencies because the vitamins will mask any deficiencies you have.  

Hang in there!  You're on the right track!  

Hope this helps!

Thank you everyone! This really helps! My mother isn't taking this seriously but the past two days I've been getting really cold sharp pokes in my chest and around my heart which ofc is making me worry. My mom is FORCING me to take the vitamins, and won't let me explain that everything she's making me do is setting me back from a proper diagnosis. She's on a tonnnn of vitamins, and blows atleast 800 dollars every 3 to 4 months on them, and I can't do that this early on without the money, so I want a proper diagnosis. I can tell my dad wants me to get better, but he definitely knows I have a tendency to freak out quickly, so he's being a little hard headed too. My mom also told me to stop eating gluten if it's making me feel worse, but she's only making food with gluten as a predominant factor, and I definitely have felt unheard in the past 2 months. I'm not sure how to get around this, but I'll definitely call the gi and see if I can get my appointment moved up. It's definitely gotten worse in the past 2 days and my discomfort has moved to actual pain in my stomach and under my ribs. I hope I haven't caused too much damage and hopefully if there is damage, it will lead to a proper diagnosis. Thank you guys again everyone here has given very useful feedback and I appreciate it! I'll keep everyone updated and informed if there's new symptoms or news from the doctors. I hope that anyone going through the same thing knows they aren't alone in this crazy stuff happening lol.

[knitty kitty]

4 minutes ago, TT0202 said:

Thank you everyone! This really helps! My mother isn't taking this seriously but the past two days I've been getting really cold sharp pokes in my chest and around my heart which ofc is making me worry. My mom is FORCING me to take the vitamins, and won't let me explain that everything she's making me do is setting me back from a proper diagnosis. She's on a tonnnn of vitamins, and blows atleast 800 dollars every 3 to 4 months on them, and I can't do that this early on without the money, so I want a proper diagnosis. I can tell my dad wants me to get better, but he definitely knows I have a tendency to freak out quickly, so he's being a little hard headed too. My mom also told me to stop eating gluten if it's making me feel worse, but she's only making food with gluten as a predominant factor, and I definitely have felt unheard in the past 2 months. I'm not sure how to get around this, but I'll definitely call the gi and see if I can get my appointment moved up. It's definitely gotten worse in the past 2 days and my discomfort has moved to actual pain in my stomach and under my ribs. I hope I haven't caused too much damage and hopefully if there is damage, it will lead to a proper diagnosis. Thank you guys again everyone here has given very useful feedback and I appreciate it! I'll keep everyone updated and informed if there's new symptoms or news from the doctors. I hope that anyone going through the same thing knows they aren't alone in this crazy stuff happening lol.

If your GI won't squeeze you in sooner with your severe symptoms, you always have the option of going to the Emergency Room.  Print out this thread to take with you since it describes your symptoms (and contains advice from seasoned Celiac Disease sufferers and we know what we're talking about!) 

Thiamine and B12 deficiencies can be life-threatening.  

Pains in the area you describe can also be symptoms of something more serious that needs medical attention like an ulcer or perforated intestinal tear.  

Keep us posted on your progress! 

Best wishes for you!

[trents]

TT0202, are the supplements your mother is providing you gluten free? Wheat starch is often used in pills as a filler. I would check on each one when and if you do decide to go gluten free. Little things like that can keep inflammation smoldering in your gut and inhibit healing.

Please keep in mind that if you do schedule testing for celiac disease you must be eating regular amounts of gluten for 6-8 weeks leading up to the testing.

[Russ H]

Hello TT0202,

Sounds like you have been through the wringer. Sounds like you need to be under the care of a good doctor. What vitamin supplements are you taking, what dose and for how long?

Russ

[TT0202]

23 minutes ago, Russ314 said:

Hello TT0202,

Sounds like you have been through the wringer. Sounds like you need to be under the care of a good doctor. What vitamin supplements are you taking, what dose and for how long?

Russ

Vitainfusion multi vitamins for women. I took two yesterday and they honestly possibly upset my stomach a little too. I noticed that melatonin does the same thing as well so I stopped using that too. I've been eating gluten for a bit although my stomach started hurting more from it recently, so it's not just bloating anymore. My dad doesn't really think celiac is real either which I'm very concerned that might effect my situation a bit. 

Just now, TT0202 said:

Vitainfusion multi vitamins for women. I took two yesterday and they honestly possibly upset my stomach a little too. I noticed that melatonin does the same thing as well so I stopped using that too. I've been eating gluten for a bit although my stomach started hurting more from it recently, so it's not just bloating anymore. My dad doesn't really think celiac is real either which I'm very concerned that might effect my situation a bit. 

Also I checked there is no wheat products like rye or malt or anything like that, but I think it's just a hit too much for my stomach rn. 

[Russ H]

8 minutes ago, TT0202 said:

Vitainfusion multi vitamins for women. I took two yesterday and they honestly possibly upset my stomach a little too. I noticed that melatonin does the same thing as well so I stopped using that too. I've been eating gluten for a bit although my stomach started hurting more from it recently, so it's not just bloating anymore. My dad doesn't really think celiac is real either which I'm very concerned that might effect my situation a bit. 

Also I checked there is no wheat products like rye or malt or anything like that, but I think it's just a hit too much for my stomach rn. 

If they are the same as these, they look OK - no crazy megadose vitamins. Bit strange that they don't have iron.

https://www.amazon.co.uk/Vitafusion-Complete-Multivitamin-Natural-Flavors/dp/B071ZJHLJR

Coeliac disease certainly is real. People used to die from it within living memory. About 1% of western populations have coeliac antibodies.

When you say that you have been having cold sharp pokes in the chest, can you describe this further? Where exactly, how often, do you feel dizzy, is it painful etc.?

Do you have a competent physician?

[TT0202]

Just now, Russ314 said:

If they are the same as these, they look OK - no crazy megadose vitamins. Bit strange that they don't have iron.

https://www.amazon.co.uk/Vitafusion-Complete-Multivitamin-Natural-Flavors/dp/B071ZJHLJR

Coeliac disease certainly is real. People used to die from it within living memory. About 1% of western populations have coeliac antibodies.

When you say that you have been having cold sharp pokes in the chest, can you describe this further? Where exactly, how often, do you feel dizzy, is it painful etc.?

Do you have a competent physician?

Mainly in my left area but sometimes around under inside my breastbone and my shoulders and neck and back get sore too like real sore. This morning in the shower it hurt just a little to breath, not enough to take my breath away or heart attack kinda way but still new and no my Dr I trusted retired and now his business is run by rude southern women who make me feel stupid

[knitty kitty]

@TT0202,

Those vitamins do NOT contain any Thiamine (Vitamin B1) at all!!!!

Get a thiamine supplement that is just thiamine.  Take a minimum of 300 mg. 

If you do have thiamine deficiency, you should see improvements within hours.  The way doctors diagnose Thiamine deficiency is to give 300-500 mg of thiamine and look for improvement.  Because thiamine deficiency can be fatal, and thiamine is harmless, they give thiamine and look for improvement within hours.  

More can be taken because thiamine, like all the B vitamins, are water soluble.  Any excess is excreted in urine.  There's no toxicity level for thiamine.  The body can only absorb 250 - 300 mg at one time, so taking more over the course of a day will not be harmful.  

Not supplementing ALL eight B vitamins can cause an imbalance because they are interdependent for proper functioning.  

Every cell in your body needs thiamine to provide energy and enzymes needed for proper functioning.  Thiamine is needed to process proteins, fats, and carbohydrates into energy for your body to use for proper functioning.  

I've experienced thiamine deficiency myself.  It will get worse if not treated promptly.  

[knitty kitty]

Here's some reading material for you....

Gastrointestinal Symptoms and Lactic Acidosis in a Chronic Marijuana User

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8221923/

And...

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And...

What Is Thiamine Deficiency? All You Need to Know

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#8-symptoms

Hope this helps.

[TT0202]

On 3/3/2022 at 11:51 PM, TT0202 said:

Hello, im a 20yo woman living in the usa and ive been noticing some heavy changes in my body these past 2 months that no doctors have given me any answers for. 

to start off with, almost 2 months ago, within the span of 3 weeks i had gone from 118lbs down to 96lbs! I found this weird, because i can literally eat my whole family out of the house. i had started a job doing 3rd shift and at the time it seemed a little okay because i was hella stressed and not sleeping good, and my eating habits became a little unhealthy. eating honeybuns and burgers with blue Gatorade was the most i could manage at the time, but that was 2 months ago, and now my symptoms have worsened, like, a LOT. i changed up my eating habits, after seeing my family doctor, who told me my blood was fine and that (other than my weight loss) i was perfectly healthy.  i started eating whole grain, oatmeal, fruits and veggies, just good eating decisions in my opinion, but my weight didnt go up at all and continued to stay down. along with all of that i also had terrible bowel movements. they were never solid, and even the ones that seemed more solid, came with lots of mucus and yellow foam. my mom and brother have symptoms of ibs, but this is different. My newer symptoms include:

cloudy urine, and weird discharge, but no yeast infection going on or bacteria. (i had multiple urinalysis' done but nothing came up)

strange fatty stools and small amounts of fresh blood. liquid diarrhea, mucusy bowel movements, and white flecks along with black flecks. (I dont have worms, and when the doctor put a finger up my butt they said there was no detected blood either)

bad acne, along with a few months of what i would consider dermatitis rashes on my butt, lips, hands, and weird rashes on the inside of my leg which resembled wingworm but it wasnt that either. 

tender lymph nodes in my neck and armpit, not swollen though, and a sore neck.

uncomfortable stomach, along with bloating, but there was no inflammation upon investigation.

weird eating habits, like one day im starving, and the next i feel nauseous after two bites.

a hard time falling asleep and staying asleep.

horrible joint pain, like when i wake up i feel like i was lifting weights the day before, mainly in my arms and wrists, and sometimes my knees.

back pain, like so bad my gluten-free has to lift me out of bed!

Heavy mood swings! i get irritated at the smallest things, cry at the dumbest things, and i cant focus that well either. i would describe it as brain fog, and its the most noticeable while im driving. i feel like i zone out a lot, to the point im seeing cross-eyed, and my eyes feel so sensitive lately too. my memory is getting a little bad too ive noticed. i started forgetting how to spell simple words and when i think of something it leaves me in a second. its not always that bad, but i definitely have some serious off days.

(i smoke btw) but i stopped recently because i wouldnt get high but my heart would start racing uncontrollably to the point i would almost pass out, even though i know what greening out is, and ive done it before, this is different! this makes me feel like im actually having heart problems, and my normal panic attack relivers don't work including breathing exercises. food doesnt help either it would just come in waves and waves where i would be okay and then woosh my heart  was beating so fast i cant even hear my own thoughts.

chills too, really bad chills. my fingers and feet feel like ice, even though i can feel a pulse in my wrist. and at night i feel this crawling sensation all over me, like a spider or something, but its nothing!

ive had an issue for a while where if im sitting, my feet start to get a purplish tinge to them and i can see all my veins, especially when im having a bowel movement. my feet feel really cold too and my legs shake a lot after. now its happening even when im standing sometimes or just laying down.

my chest hurts sometimes like little cold pokes and i feel like i cant get enough air even when i take deep breaths. im having weird heart palpitations randomly, which i thought could be stress or anxiety, but there are no stressors in half the situations.

my period is acting a little weird too. there is a lot of blood and its dark, but not dark enough to be considered unhealthy, just darker than what im used too, and so are any cuts i get as well, but the doctors told me 3 different times this month that my blood was fine!!! 

the only result i got after going to the hospital was a benign cyst in my left kidney, which they told me not to worry about, but ive also had issues with cysts for a while, but nothing came back from getting my adrenals checked.

constant mouth ulcers but they dont stay forever. rn i have a what looks like a large whitehead on my gums under my tongue and it huts kinda.

i feel constantly dizzy and out of breath, and just tired a lot even though im not actively doing much. its also a little hard to finish my bowel movements not because its super painful just really exhausting. i also get headaches quite a bit but im not sure if its just caffeine headaches or because of overstimulation to light and sound. 

i haven't puked at all, surprisingly, but i do get nauseous especially after eating or in car rides.

i decided to go on a gluten free diet, which seemed to help a little. i started having solid bowel movements and my urine wasnt cloudy, but my mood swings stayed and my weight didnt really go up. im sure i was still getting a little bit of gluten here and there, but i had to go back on a gluten diet in hopes of being tested for celiac, and my weight started dropping again, but after that the symptoms just got worse. than they were before. im going to a gi in april but im worried thats so far away. i keep telling myself i will be fine but its hard to think that way when i dont feel fine.

that being noted, i have been eating this whole time, even making myself sick at the end of the day just to prove a point, because my parents believe im not eating and milking this whole experience just for attention or something idk honestly. all i know is that i dont feel like myself. almost everyday now i feel like im outside of my body, not really in control of what i say or do, but they dont really seem to think its critical. i start my job again soon, a different one ive had in the past, not 3rd shift this time, and im scared. im scared to drive and im scared to work 8 hours doing physical work when i already struggle to lift small things on my own. my gluten-free is worried but she cant really help me like they can. im thinking about applying for my own insurance and maybe moving out soon to live with my brother, because they have done nothing but make me believe im crazy and that im anorexic and a hypochondriac. i want to be succesful in my life, but this makes me feel like im probably not going to see that ever. i have it in the back of my head that whatever is going on is just slowly chipping away at me and i cant do anything but wait and wait until its too late. im worried about the damage, and the constant phone calls of doctors telling me nothing is wrong. can stress do this much? ive been out of work for almost 2 months now, and i even WANT to believe im okay but that doesnt even work now. my parents think its a mental issue, but i havent struggled with anxiety or panic attacks until recently, although i have been depressed for a while, but im a binge eater when im sad, and this is just weird. ive never felt like this before, no matter how stressed i was. im hoping my next few tests when i get them show some results, but at this point im not hopeful they will.

 

Update: I decided to go back to a Gluten free diet and maybe tomorrow I'll go get a b1 vitamin. Everytime I stand up my heart starts racing and I've had 3 "panic attacks" in the last 2 days, just from doing simple things like showering or listening to music. I also have this weird hard lump under my left ribs that hurts to push on and it's pretty solid it doesn't move at all. My parents think it's a hernia and that im "fine". Listen, when I say I have grown to despise my mother I really mean it. I told her I couldn't have this beef broth in the cabinet today because it had gluten byproducts and she told me I can screw off. I feel stuck because I start work this week but I feel even more off this week then I did last week. They told me I couldn't go to the beach with my girlfriend today because it would strain my muscles but they still expect me to drive 30min to work and work 8 hour shifts lifting heavy things all day. Idk what to even do at this point.

[knitty kitty]

@TT0202,

A racing heart and panic attacks  when you stand up and move around sounds like Postural Orthostatic Tachycardia Syndrome (POTS) and is symptomatic of thiamine deficiency.  

I understand completely.  My mother and father both routinely dismissed my symptoms.  

Your parents probably did not want you to go to the beach so you would be able to go to work.  I am familiar with that reaction, too.  "If you're well enough to go out for fun, you're well enough to go to work."

Seriously, get a five dollar bottle of thiamine Vitamin B1 first thing tomorrow and take 300 mg of thiamine.  You should see improvements within hours.  If not, go to the Emergency Room. 

I'm not a doctor, I'm a microbiologist who has experienced thiamine deficiency first hand. 

Thiamine deficiency is often overlooked by doctors because they are not trained in vitamin deficiency symptoms.  The way doctors diagnose thiamine deficiency is to give 300 - 500 mg of thiamine and see if there's improvement.  If thiamine is deficient, improvement should be seen within hours to days of supplementing with 300 - 500 mg thiamine several times a day.  

Hang in there!  

  {{{HUGS}}}

[TT0202]

11 hours ago, knitty kitty said:

@TT0202,

A racing heart and panic attacks  when you stand up and move around sounds like Postural Orthostatic Tachycardia Syndrome (POTS) and is symptomatic of thiamine deficiency.  

I understand completely.  My mother and father both routinely dismissed my symptoms.  

Your parents probably did not want you to go to the beach so you would be able to go to work.  I am familiar with that reaction, too.  "If you're well enough to go out for fun, you're well enough to go to work."

Seriously, get a five dollar bottle of thiamine Vitamin B1 first thing tomorrow and take 300 mg of thiamine.  You should see improvements within hours.  If not, go to the Emergency Room. 

I'm not a doctor, I'm a microbiologist who has experienced thiamine deficiency first hand. 

Thiamine deficiency is often overlooked by doctors because they are not trained in vitamin deficiency symptoms.  The way doctors diagnose thiamine deficiency is to give 300 - 500 mg of thiamine and see if there's improvement.  If thiamine is deficient, improvement should be seen within hours to days of supplementing with 300 - 500 mg thiamine several times a day.  

Hang in there!  

  {{{HUGS}}}

I couldn't find any b1 by itself so I just got a super b complex and I'll probably try to see if I can find b1 by itself somewhere else tmr. I can only take 1 of them so im only getting a dose of 100mg but hopefully there's enough of it to keep me going 

[trents]

A health store may or Amazon might be good places to find individual vitamin products.

[TT0202]

On 3/7/2022 at 1:28 PM, TT0202 said:

I couldn't find any b1 by itself so I just got a super b complex and I'll probably try to see if I can find b1 by itself somewhere else tmr. I can only take 1 of them so im only getting a dose of 100mg but hopefully there's enough of it to keep me going 

A bit of good news! My girlfriends mother helped me out and found b1 so I've been taking one multivitamin, one b complex, and two 250mg b1 throughout the day (600mg of b1) and it seems to be helping just enough. My gi appointment got moved to the 17th so just a few days from now! Hopefully I get some answers but I finally don't feel completely dead after taking the vitamins for a few days. It's not fixed or anything but it's definitely made a slight improvement!

[trents]

Good to hear, TT0202! Keep us posted about the GI doc appointment.

[TT0202]

On 3/14/2022 at 10:32 AM, TT0202 said:

A bit of good news! My girlfriends mother helped me out and found b1 so I've been taking one multivitamin, one b complex, and two 250mg b1 throughout the day (600mg of b1) and it seems to be helping just enough. My gi appointment got moved to the 17th so just a few days from now! Hopefully I get some answers but I finally don't feel completely dead after taking the vitamins for a few days. It's not fixed or anything but it's definitely made a slight improvement!

At the gi rn and he's telling me It's probably just ibs. He's gonna run labs but they aren't gonna help because I've been gluten free for a week and a half now so idk guys. They said it might be celiacs just because I'm pushing that the gluten free diet has really helped me. I literally hate this country's health care and they don't take anything that I say seriously 

[Wheatwacked]

12 hours ago, TT0202 said:

They said it might be celiacs just because I'm pushing that the gluten free diet has really helped me.

Even if your tests are negative, who is more right, your gut or a lab test. If the gluten free diet and vitamins help enough to keep you off IBS medications, that's pretty indicative that you have a problem with wheat. Treatment for Celiac and NCWS (NCGS) is the same. Gluten Free Diet and resolve any vitamin and mineral deficiencies. In addition to the vitamins and minerals you are not absorbing well while healing there are others fortified to wheat products that you may not have in your new diet, so find another source for them.

Celiac Disease: (Gluten Enteropathy) 

https://www.merckmanuals.com/home/digestive-disorders/malabsorption/celiac-disease

[TT0202]

On 3/17/2022 at 10:15 PM, Wheatwacked said:

Even if your tests are negative, who is more right, your gut or a lab test. If the gluten free diet and vitamins help enough to keep you off IBS medications, that's pretty indicative that you have a problem with wheat. Treatment for Celiac and NCWS (NCGS) is the same. Gluten Free Diet and resolve any vitamin and mineral deficiencies. In addition to the vitamins and minerals you are not absorbing well while healing there are others fortified to wheat products that you may not have in your new diet, so find another source for them.

Celiac Disease: (Gluten Enteropathy) 

https://www.merckmanuals.com/home/digestive-disorders/malabsorption/celiac-disease

Soooo I got my results back. They ran a Anti-Tissue Transglutaminase Antibody test on me that came back negative. He literally told me I didn't need to be on a Gluten diet for accuracy but when I checked it says I need to be on gluten for a consistent amount of time to get accurately tested. He told me i didn't require any further testing too. I feel dismissed completely. My weight won't go up but it hasn't been dropping so apparently because I'm "fine" now nothing was ever wrong according to the gi. They won't even check my intestines for damage. I'm literally broke now with a 700 dollar bill waiting for me all for no results. I hate it here and I hate being a young female who never gets taken seriously by healthcare. They literally just passed it off as a mental problem.

[trents]

On 3/17/2022 at 6:47 AM, TT0202 said:

At the gi rn and he's telling me It's probably just ibs. He's gonna run labs but they aren't gonna help because I've been gluten free for a week and a half now so idk guys. They said it might be celiacs just because I'm pushing that the gluten free diet has really helped me. I literally hate this country's health care and they don't take anything that I say seriously 

What about NCGS (Non Celiac Gluten Sesitivity) instead of celiac disease. They have common symptoms and the antidote is the same, total abstinence from gluten. No damage to the villi, though with NCGS like there is for celiac disease and there is no test for it. Celiac disease must first be ruled out. In addition to that, some people who do have celiac disease throw negatives on the tTG-IGA. There are other blood tests for celiac disease that can be run.