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

[TT0202]

Just now, trents said:

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.

I haven't been eating gluten for about 3 weeks almost 4 and he ran that test saying it didn't require gluten in my system but it literally says it does. He never diagnosed someone with celiacs and the test they gave me was apparently not commonly given either. The fact that he kept telling me it was probably just simple ibs is bs. I've also cut dairy from my diet too because it definitely messed a little with my stomach. Idk I just want my weight to go back up but it won't budge no matter how much I eat.

[knitty kitty]

14 minutes ago, TT0202 said:

I haven't been eating gluten for about 3 weeks almost 4 and he ran that test saying it didn't require gluten in my system but it literally says it does. He never diagnosed someone with celiacs and the test they gave me was apparently not commonly given either. The fact that he kept telling me it was probably just simple ibs is bs. I've also cut dairy from my diet too because it definitely messed a little with my stomach. Idk I just want my weight to go back up but it won't budge no matter how much I eat.

Can you ask your doctor for a genetic test which looks for the most common Celiac genes?  

Doctors can be ignorant about testing for Celiac.  If gluten makes you too ill to do the gluten challenge (6-8 weeks of gluten consumption for blood test, 2 weeks of gluten consumption for endoscopy), request genetic testing from your doctor.  Some companies offer genetic screening for Celiac Disease that you can do independently of your doctor.  

Good decision to cut out dairy!

[TT0202]

Just now, knitty kitty said:

Can you ask your doctor for a genetic test which looks for the most common Celiac genes?  

Doctors can be ignorant about testing for Celiac.  If gluten makes you too ill to do the gluten challenge (6-8 weeks of gluten consumption for blood test, 2 weeks of gluten consumption for endoscopy), request genetic testing from your doctor.  Some companies offer genetic screening for Celiac Disease that you can do independently of your doctor.  

Good decision to cut out dairy!

Yeah I've noticed that every time I go on a gluten free diet and then accidentally get some gluten it hurts more and more each time like the pain gets worse. A few days ago I tried a drink like just 1/4 of it and then like 3 to 4 hours later I literally felt like someone left a knife in my stomach and apparently the drink was a beer that had gluten. It literally hurts so bad like the worst period pain imaginable so im too scared to eat gluten again but if I had a doctor monitor it I might feel better but my gi was very ignorant to celiacs or gluten sensitivity. I need to get a job and pay my bills first before I can do any further testing so rn I just have to hope for the best and hopefully get a little better

[trents]

3 minutes ago, TT0202 said:

Yeah I've noticed that every time I go on a gluten free diet and then accidentally get some gluten it hurts more and more each time like the pain gets worse. A few days ago I tried a drink like just 1/4 of it and then like 3 to 4 hours later I literally felt like someone left a knife in my stomach and apparently the drink was a beer that had gluten. It literally hurts so bad like the worst period pain imaginable so im too scared to eat gluten again but if I had a doctor monitor it I might feel better but my gi was very ignorant to celiacs or gluten sensitivity. I need to get a job and pay my bills first before I can do any further testing so rn I just have to hope for the best and hopefully get a little better

Yes, that is usually how it works when you try to go back on gluten for testing after a significant time away from it.

[knitty kitty]

Can you find a different doctor? 

A naturopath? 

Write a complaint letter to the medical board? 

[TT0202]

1 minute ago, knitty kitty said:

Can you find a different doctor? 

A naturopath? 

Write a complaint letter to the medical board? 

Possibly. My mom finally got a new family doctor and I go to my first appointment in a few days. Hopefully they can help me out a little bit 

[Scott Adams]

Given that your doctor got this wrong, and you do need to be eating ~2 slices of wheat bread per day for 6-8 weeks before blood tests for celiac disease will be accurate, and that they claim now that you don't need further testing, I say just go gluten-free for a few months and see how things go.

[trents]

I agree with Scott. The proof is in the pudding. If removing gluten from your life makes you feel better that is what to focus on.

[knitty kitty]

2 hours ago, TT0202 said:

Possibly. My mom finally got a new family doctor and I go to my first appointment in a few days. Hopefully they can help me out a little bit 

See if the new doctor will do a genetic test.  Explain how severe your reaction to gluten is.  

I was the same way, could not eat gluten long enough, and vitamin deficiencies and diabetes caused wonky blood test results.  One doctor ordered the genetic test to get rid of me.  But it proved I have two genes for Celiac.  So hang in there!  

Have you been keeping a food journal?  Keeping a food/mood/poo'd journal can help show a relationship between foods and symptoms.  Take it with you to show the doctor.  

 

[Bebygirl]

On 3/4/2022 at 3:37 PM, 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.

Ok, so let me tell you my struggle, it is a lot like yours, perhaps you can glean some advice on your current situation, my husband refuses to go gluten free, so I do not use the same pots and pans he does, I wash my dishes with gloves on, I don’t use toothpaste, lip gloss, chapstick makeup etc unless it is certified gluten free, hand sanitizer also can be contaminated by gluten, so please don’t buy anything that is not certified. For the first week I was so freaked out all I would eat was baked potatoes with butter and salt, the next week I had white rice with butter, in that time my panic stopped and my memory and excitability also subsided, I keep a journal of everything that goes on my hands, on my lips, or in my mouth, mayonnaise, mustard, toothpaste, pickles, etc, all of it matters unless you make it yourself. I also had a blood test and only one major vitamin showed and that was vitamin d, but I was also iron anemic (  causes major dizziness and panic), my muscles hurt so much I couldn’t stand up straight nor pull on a pair of jeans. My back was so bad I couldn’t bend down to bathe myself. If you make all your own food and use your own dishes, you will be fine. The proof is in the tasting of the pudding, which means once your family sees the changes, then they will wise up. I also know that being numb to other peoples struggles, apathy, and the like is a symptom of being glutened, so I would think the people you spoke about are also suffering , they just are in major denial, it seems to me you will need to get your own house in order and then you will be helping them eventually, this is something that is happening to everyone irrespective if they agree or not, and once they see the changes, you will be more equipped to help them. I didn’t get to my diagnosis in time, as looking back my mother was also celiac, but she went undiagnosed for too long and died of cancer, this is the reality. Please keep a journal including your mood changes, as I have tracked down my moods are directly related to being glutened within 4-6 hours, this stuff  is so sneaky, you will have long forgotten what you ate when the symptoms appear, just remember that. 1. Journal, 2. Use gloves, 3. Circle everything that says gluten free on it so you know in advance it has been checked by you,  4. Anything iffy needs to be boxed out of your way until you have time to check it. I promise you I really feel after reading your statement, that you are still being glutened, it helps to figure out how, my motto is “it’s it doesn’t say gluten free, it’s not for me”. Some stores claim their items are “naturally gluten free”, this is Bunk, it is code for “contaminated by gluten”, I have yet to come across anything that says naturally gluten free that hasn’t made me sick. Best of luck to you, I’ll. Check this forum later and see if you have any questions. I’m doing it in a household with no help, so you are not alone, and yes you can do it.

[Wheatwacked]

9 hours ago, TT0202 said:

I've noticed that every time I go on a gluten free diet and then accidentally get some gluten it hurts more

You have your answer. The issue here is your health and what makes you feel better; not whether the doctor agrees with you.  As a fact out of left field, the Icelandic Eskimos never had diabetes until they started eating a "western diet" in the 1950's.

Wheat is stripped of most of its nutrients in milling (except gluten) and most countries have fortification programs. The nutritional value espoused is mostly added synthetic. Nutrients Added Through Fortification It is important on GFD to make sure you are getting those nutrients from other sources. 

[Bebygirl]

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.

My battery is about to die, but love you are celiac, you don’t need a doctor to tell you that. Please don’t eat another thing that doesn’t say “gluten free” on it, it’s not your it is the malnutrition that the gluten causes via leaky gut, no oats, no honey buns, etc. not even coffeee creamer etc, unless it says “gluten free “ on it, I recently got glutened by cheese and allergy medication because I broke my cardinal rule, which is if it doesn’t say gluten free, it ain’t for me. I’ll check back tomorrow , you gonna be just fine if  just stick to the rules, not one item. Toothpaste lipstick, creamer, yogurt, etc unless it says gluten free.

 

[Wheatwacked]

If it doesn't come in a box or bag, it is likely gluten free.

[JenFern]

That's a very serious constellation of symptoms.  I'm not going to get popular on this forum by saying this, but if you had made this post on a gallbladder forum, a cancer forum, a liver forum etc.  they're all going to give you an affirmation in response (eureka! that's it!) 

 You absolutely need this properly checked out by a medical team and as soon as you can.  I realize that in the US with the medical staff shortages, expense, etc.  that's not always easy.   I know from experience a lot of times our healthcare system is less than stellar at listening to patients.  

A lot of young people have had heart issues lately, I wouldn't rule that out.  Eating healthier and avoiding gluten won't hurt.  Maybe sub out a banana for a honey bun, they're both fast food but one is a little bit better for you   Don't start smoking the green stuff again, lay off that until at least you have all your medical work done because it can compromise the results.  It sounds like your instincts for self-preservation are kicking in, and there will be a good reason for that, trust your gut and your instincts, they won't let you down.  

Again, these are extremely serious symptoms.   Insist on proper testing.  Get the sonogram of your heart, the EKG, the full work up if at all possible.  If the heart isn't working properly it absolutely will mess with your digestive system.  (Also, did you get tested for type 1 Diabetes by any chance? The weight loss and trouble digesting are typical of a pancreatic issue.)  Honestly this could be quite a few things. 

Take care

[gannyhelp]

On 3/3/2022 at 10:51 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.

 

Im new here and thankful to see others who i can relate to. I have every symptom you have and more! I've felt like a hypochondriac over the last 2 years! I never feel good! Thought the same thing, that this was my "normal" now and I don't want to live like this. Ive missed work, events, lay in bed from extreme fatigue and dizzyness etc. Numerous doctors haven't figured it out. Ended up in ER last week for critical anemia and blood transfusion! Finally had my GI consult Monday and colonoscopy and endoscopy today. He brought up Celiac testing after the procedures. I've researched for hours and I'm in shock at everything I'm reading and positive this is what's been slowing sucking the life out of me for 2 years. I'm hopeful now though. I haven't had that feeling in a long time. They need to bring more attention to this and stress how serious the deterioration is. Hang in there. I feel better just knowing I'm not alone anymore and that there's a logical explanation in the works. 

[Wheatwacked]

13 hours ago, gannyhelp said:

sucking the life out of me for 2 years.

Longer than that. Many symptoms are passed off as normal until you start gluten free living and replenish your vitamin deficiencies and realize it was not normal. Among the 19 sypmtoms that started to clear, I was a mouthbreather from birth to GFD. By the way for a large boost of hope: 250 mcg (10,000 IU) of vitamin D3 works in less than a week.

[gannyhelp]

Thank you so much! I will get that today!