The Nightmare Continues

[fletcher96]

I saw two doctors yesterday. Yesterday was supposed to be the best day of my life. The day I find out what's wrong with me. My mom found me a seemingly wonderful new doctor. We watched her video online. She seemed caring, helpful, and personable. I came prepared with past blood test results and a long, long list of symptoms. When she walked in, I held back tears - this was it! Shortly, however, I realized her video did not match who she was. She was distant, uncaring, and impatient as I read off my symptoms. I made the mistake of telling her I had PTSD. She gave me some neurological tests (a few of which I didn't do so well on, which I realized when I went home and researched the tests, particularly the Romberg's test). She said I passed all of them. She said I had the physical symptoms of someone with PTSD. I held back tears yet again when she told me to see a therapist. I drove to a nearby strip mall parking lot and cried and cried for ten minutes while talking to my mom, who was also very upset. I was already treated for PTSD. I have greatly improved. She didn't care about my 100-130 resting heart rate (she said my heart rate naturally becomes high when I'm anxious) or the fact I lost 10 pounds for no reason almost two years ago. She didn't care about my pain, acid reflux, brain fog, constant pins-and-needles feeling, non-acne bumps on my forehead and mouth, painful red bumps near my hairline on my neck (she didn't even look at them), hot flashes, migraine headaches, constipation, shortness of breath, tongue sores, lactose intolerance, tree-nut intolerance, GLUTEN intolerance, beau's lines, my abnormal cold feeling, my hair is thinning so much I can't wear it down unless I wear extensions, muscle spasms, bags under my eyes, or blurred vision. I think she was also upset at my use of medical terminology and how I analyzed my test results and seemed very educated. She also smirked when I said I was vegan even though I keep track of all my vitamins, calories, amino acids, etc. on the Cronometer app.... I get everything I need. Plus, this stuff started happening before I went vegan.

For my next appointment, I made the mistake again of venting to this nurse whom I had seen before and thought she was cool. I told her about the previous doctor. She too said I should see a therapist. I have a huge history of type I diabetes in my family, and I told her this. I was so frustrated with the first doctor that I went home and ate half a hamburger bun to prove myself. Part of the reaction occurred immediately. But the worst part happened when I was with the nurse. My blood pressure in the morning was 100/80. Then the other nurse checked it, and it was 142/77. She decided to check my pulse, which was 140. When the NP came in I had to stop talking and told her what happened and that I was having a reaction. I was shaking uncontrollably, my brain was very foggy, and I could barely speak because of dry mouth. I continued talking about my symptoms. I explained my hot flashes and how I would "wake up in a puddle...pool...pool of...blood" - SO EMBARRASSING! I meant to say sweat! But at least she could see I wasn't lying about the brain fog! 10 minutes later, I felt so foggy and out of it. My vision was blurry. I did a 180. Unlike last time I ate gluten, my stomach didn't do too much bloating, which she happily acknowledged when I pointed it out to her. So, the proof didn't work. She said I could be just gluten intolerant (obviously...). She tested my blood sugar, and it was 105. I had eaten a bowl of cereal, almond milk, and half a hamburger bun that day. In October, I saw a different NP at that clinic when I thought I had pin worms. She must've read my file when they didn't find any parasites. I said do you really think the other doctor thought I was lying? She said, well, not lying, but when you start noticing things, you may think you have those symptoms when they're really not important. Probably didn't help that I said no one believed me in grade school when I got stomach cramps after lunch from drinking milk and that the adults and my parents all thought I was faking the stomach aches to go home from school. She said stress and anxiety cause high heart rate. I said even when my heart rate is 90 when I'm asleep (I wear a FitBit)? She said the same thing. She said what happens if the test results come back negative? Well, what do you think? We keep looking! I will not rest until I find out the cause. I thought I had pin worms because I had rectal itching and discharge - something I saw people talking about on this site. Actually, several of my unexplained past issues I have found on this site.

Everyone just thinks and has always thought I'm an emotional, dramatic typical female patient. There have actually been studies on this, where a man and woman both go to a doctor, and the man will be suspected of having a certain ailment which the researchers told them to give the symptoms for, whereas the woman will usually be referred to a therapist for the same symptoms. I've been almost non-stop crying because of this, and I know my story is not uncommon. I even googled the physical symptoms of PTSD and guess what came up - AUTOIMMUNE DISEASES! So, that kind of backfired on them. Hopefully I will have the test results back by Friday. I don't know how everyone else gets diagnosed. Why are other people taken seriously but not me and some other people like me? How can this possibly be dismissed as emotional?

[Bananasbananas]

This is why I chose a direct to consumer test. I’m sure my doctor may have been open to ordering the test based on my symptoms, but if they weren’t that’s a $300 office visit down the drain, while the test only cost me $200. Hoping for the best for you.

[knitty kitty]

Fletcher, you poor thing!  Get your vitamin B12 levels checked! And vitamin D levels also!  

Low vitamin D can cause depression.  Low B12 can cause mental changes, too.  As can deficiencies of thiamine and niacin.  

"Vitamin B12 deficiency is characterized by megaloblastic anemia, fatigue, weakness, constipation, loss of appetite, and weight loss. Neurological changes, such as numbness and tingling in the hands and feet, can also occur. Additional symptoms of vitamin B12 deficiency include difficulty maintaining balance, depression, confusion, dementia, poor memory, and soreness of the mouth or tongue. The neurological symptoms of vitamin B12 deficiency can occur without anemia, so early diagnosis and intervention is important to avoid irreversible damage."

You say you're a vegetarian.  I understand your app may keep track of the nutrients you eat, but there may be malabsorption involved.  So even though you eat enough, the nutrients might not all be absorbed.  

I had an awful time with vitamin deficiencies and mental changes, including PTSD, panic attacks, depression, and dementia.  Gluten can do weird stuff to the brain.  

I hope these articles help.  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hang in there!  It's not all in your head!  Keep looking for a competent doctor.  And keep us updated!

[Jmg]

I feel for you. I know what its like to leave a doctor's rooms thinking that they've not taken you seriously or that they've not taken account of something which you strongly feel to be significant. I have no doubt that you're right that younger women in particular will often get too easily dismissed as overly emotional but don't think that it only happens to them. When it comes to matters of health we can all feel uniquely vulnerable and exposed.  I'm an educated, tall, confident and somewhat eloquent middle aged guy but I've left a medical appointment upset knowing that the person involved has dismissed me and not listened to a word I've said.  It's a horrible experience and of course it comes on top of the reasons you went to them for help in the first place.

One thing I realised I needed to change was my own expectations and perceptions of doctors as a whole. Over time I realised that my childhood image of doctors as all knowing all caring super professionals was just that, childish. In reality there are some good, some bad and a lot of fair to middling or plain old indifferent, just like any other profession. It helps to view them in the same way you would a mechanic for your car. You try and find the best one you can and stick to them, but sometimes they're not available and you just have to work with what you can get. 

You deserve a good caring doctor, but you also need to get the most out of the crappy ones because ultimately your health is the main goal not fixing any defects in the medical profession. So please take the following as advice with that aim in mind. 

Firstly, prepare in advance for any appointment. There's some good general advice here:

Open Original Shared Link

Open Original Shared Link

Second, try and take as much emotion out of this as possible. The notes that you've made? They're probably too long. Revise them down to key points, don't include too many and try and keep things very matter of fact as if you're talking about a faulty boiler! Try and keep to the facts and keep your answer concise. But do make sure you mention everything on your list, you don't want to leave the appt and realise you've left out something important.

Avoid giving any indication that you're expecting diagnosis x or y. Instead, if you do suspect something push for an exclusion.

Thirdly, remember to manage your expectations, that makes the bad appts easier to come to terms with. These aren't supermen or women. Sometimes they're not specialists in the field, other times they may be tired or having a bad day like any of us. Focus on getting the most you can from them and if it doesn't go well try to move on as quickly as possible, maybe to another doctor... 

Finally, it's a hard thing to come to terms with but for some of us there isn't a simple diagnosis to wrap things up neatly and explain everything. I tested negative despite the rigours of the gluten challenge.  The good news is cutting gluten and dairy from my diet helped me immensely. There is no treatment for celiac other than the gluten free diet but some people don't test positive for celiac but still benefit from the diet. So pursue your diagnosis but don't let that pursuit become your sole focus. Your health is what's important ultimately, not the classification in your doctors notes.

Best of luck and keep your chin up

Matt

[fletcher96]

10 hours ago, knitty kitty said:

Fletcher, you poor thing!  Get your vitamin B12 levels checked! And vitamin D levels also!  

Low vitamin D can cause depression.  Low B12 can cause mental changes, too.  As can deficiencies of thiamine and niacin.  

You say you're a vegetarian.  I understand your app may keep track of the nutrients you eat, but there may be malabsorption involved.  So even though you eat enough, the nutrients might not all be absorbed.  

I had an awful time with vitamin deficiencies and mental changes, including PTSD, panic attacks, depression, and dementia.  Gluten can do weird stuff to the brain.  

Yeah, that's why I kept mentioning the app to them. I was hoping they would ask to look at it. I can't think of anything else but malabsorption. No one has a BMI of 18.5 and eats 2000 calories a day.... And I don't get diarrhea, but I go to the bathroom at least 3 times a day, usually after I eat. About half the time it is constipation, the rest is regular. Sorry if that's TMI. I wonder if going multiple times a day is considered diarrhea? I got my vitamin B12 levels checked in October, and they were 811. She said it wasn't really worth it to get checked again because 811 is really high, but I did anyway. I said no to the vitamin D test but will get tested next time I go in. I get panic attacks too! :/ Since 8th grade. I have been taking 1000mcg of B12 per day for the past week or so. Is that even doing anything if I have malabsorption? It's going straight to my stomach. Also, when I go to sleep with the lights off, I get really dizzy, and last night it was making me nauseous. It's like I'm in a hammock, but it's faster and more dramatic swinging. Vertigo maybe? My grandma gets vertigo. Her dad had diabetes, her grandma, great-grandma, aunt, cousins. Everyone has diabetes on her side. And diabetes and celiac are common together. I also have the HLA DQ2 genes.
I will definitely let you know what the results are. Thanks for the support!  

6 hours ago, Jmg said:

You deserve a good caring doctor, but you also need to get the most out of the crappy ones because ultimately your health is the main goal not fixing any defects in the medical profession. So please take the following as advice with that aim in mind. 

Second, try and take as much emotion out of this as possible. The notes that you've made? They're probably too long. Revise them down to key points, don't include too many and try and keep things very matter of fact as if you're talking about a faulty boiler! Try and keep to the facts and keep your answer concise. But do make sure you mention everything on your list, you don't want to leave the appt and realise you've left out something important.

Thirdly, remember to manage your expectations, that makes the bad appts easier to come to terms with. These aren't supermen or women. Sometimes they're not specialists in the field, other times they may be tired or having a bad day like any of us. Focus on getting the most you can from them and if it doesn't go well try to move on as quickly as possible, maybe to another doctor... 

Finally, it's a hard thing to come to terms with but for some of us there isn't a simple diagnosis to wrap things up neatly and explain everything. I tested negative despite the rigours of the gluten challenge.  The good news is cutting gluten and dairy from my diet helped me immensely. There is no treatment for celiac other than the gluten free diet but some people don't test positive for celiac but still benefit from the diet. So pursue your diagnosis but don't let that pursuit become your sole focus. Your health is what's important ultimately, not the classification in your doctors notes.

Best of luck and keep your chin up

Matt

Thank you! This advice is actually really helpful. I am picking yet another doctor right now. One is an MD. My mom saw her and really liked her. She has only 1 bad review about a misdiagnosed bee sting. But she specializes with older people I think. The other doctor I saw when I was like 10. He was good. He has a MD and a Ph.D. He specializes in diabetes. What are your thoughts? I'm thinking go with the Ph.D. He also has zero bad reviews. Also, is there a way I could interview a doctor before the appointment? My mom is going to call that doctor from the other day. Or her boss.... She's pissed off  lol I'm just glad my mom is finally taking me seriously! I really don't express emotions other than anger. I was just assuming they were stereotyping me. When she asked about my PTSD, I talked about my abusive ex like I was talking about the weather.... I have bullet point symptoms and just casually elaborated on each of them. My mom said I shouldn't bring in as much detail because I look like I'm a "hypochondriac" (I hate how people misuse that word....). But maybe I should take out the symptoms like "anger" and "lost interest."
 

I was actually researching why a diagnosis is really necessary. But when I said to the doctor I was gluten intolerant, she immediately asked, "Were you diagnosed?" I said, "No.... I tested it, though." Lol who needs a diagnosis for an allergy or an intolerance? My brother is allergic to tree nuts and gets anaphylaxis. He's also allergic to kiwi. We're both allergic to cats, dogs, horses, etc. He gets hives, eczema, and coughs a lot. I wish I could bring him for proof it's not all in my head! My brother just doesn't care. I asked him to eat a piece of bread and "see what happens," and told him about the gluten intolerance thing, and he said he doesn't care. Ugh.

20 hours ago, Bananasbananas said:

This is why I chose a direct to consumer test. I’m sure my doctor may have been open to ordering the test based on my symptoms, but if they weren’t that’s a $300 office visit down the drain, while the test only cost me $200. Hoping for the best for you.

Thank you. I thought that was only available in the UK and Canada? I doubt it's illegal to ship to the US though. Yeah. My doctors visit in the morning was a rip-off  

[RMJ]

In the US in most states you can order and pay for some blood tests online, then go into a lab for the blood draw. Mymedlab.com, walkinlab.com are two of them.

[fletcher96]

24 minutes ago, RMJ said:

In the US in most states you can order and pay for some blood tests online, then go into a lab for the blood draw. Mymedlab.com, walkinlab.com are two of them.

Oh, maybe I was thinking of a test where you prick your finger, and it tells you the reading like a blood sugar test does. I was reading a book about it last night. I thought that was what it described.

[knitty kitty]

1 hour ago, fletcher96 said:

Yeah, that's why I kept mentioning the app to them. I was hoping they would ask to look at it. I can't think of anything else but malabsorption. No one has a BMI of 18.5 and eats 2000 calories a day.... And I don't get diarrhea, but I go to the bathroom at least 3 times a day, usually after I eat. About half the time it is constipation, the rest is regular. Sorry if that's TMI. I wonder if going multiple times a day is considered diarrhea? I got my vitamin B12 levels checked in October, and they were 811. She said it wasn't really worth it to get checked again because 811 is really high, but I did anyway. I said no to the vitamin D test but will get tested next time I go in. I get panic attacks too! :/ Since 8th grade. I have been taking 1000mcg of B12 per day for the past week or so. Is that even doing anything if I have malabsorption? It's going straight to my stomach. Also, when I go to sleep with the lights off, I get really dizzy, and last night it was making me nauseous. It's like I'm in a hammock, but it's faster and more dramatic swinging. Vertigo maybe? My grandma gets vertigo. Her dad had diabetes, her grandma, great-grandma, aunt, cousins. Everyone has diabetes on her side. And diabetes and celiac are common together. I also have the HLA DQ2 genes.
I will definitely let you know what the results are. Thanks for the support!  

If you've been supplementing with B12 for the past week and got your B12 levels tested just recently, the test may not be accurate.  One shouldn't supplement two to four weeks prior to testing.  

B12 is just one of a group of eight B vitamins.  They all work together. They need each other in a sort of assembly line fashion. B12 needs folate(B9) to work.  Folate needs B6(pyridoxine) to function properly.  You get the idea.  You might consider stopping all supplements until you see a doctor and get tested for deficiencies and ask about appropriate supplementation with a B complex vitamin and minerals.  But DO get your Vitamin D checked!  Thiamine and niacin, too!  These are often the first to be lost due to malabsorption.

Doctors look for changes in bowel movement patterns.  If your patterns have changed to going more frequently, that is something that the doctor needs to know.  A food journal is helpful here. Introduction of new or an increase in some foods or drinks can cause changes.  

2 hours ago, fletcher96 said:

I also have the HLA DQ2 genes.

What advice were you given when you received these test results?  Your new doctor needs to know this.  

I wrote a time-line for my doctor to read before my appointment.  I listed the year and my age at that time and major health problems that cropped up (surgery, dental work, vision problems, drugs prescribed, mental health changes, etc.)  I kept each entry as brief as possible, like a medical resume.  My doctor was able to pick out patterns that helped with his diagnosis.  

I sympathize with your experience trying to explain things to the nurses.  I would get very upset, talk too much, bring up things that weren't relevant, and then regret what I said when I saw that "she's a hypochondriac" look in their eyes.  Having my history down in black and white on paper in chronological order relieved me from feeling like I was a blithering idiot (social anxiety) and helped me keep my composure.  And I like to think the doctor appreciated my efforts.  He didn't have to sort through stacks of old records.  

Hope this helps!

 

[Renee Pearman]

This HAS to be gluten intolerance.  I'm 65....I didn't know it could develop and sometimes leads to lactose intolerance.  Three nights ago, I ate half of a burger bun with roast pork and suddenly my stomach was so full of hurting gas that the only relief was to vomit.  Because that went on for about 5-6 hrs., I thought MAYBE the pork had gone bad.  Good guess but today on an empty stomach, I had a piece of cornbread and VIOLA!  the very same full of gas, need to be sick situation is here.  SO...I can join the rest of you in learning what to avoid but my gosh....what does one do if this happens gain???  Antacids don't help and it HURTS!!

[cyclinglady]

2 minutes ago, Renee Pearman said:

This HAS to be gluten intolerance.  I'm 65....I didn't know it could develop and sometimes leads to lactose intolerance.  Three nights ago, I ate half of a burger bun with roast pork and suddenly my stomach was so full of hurting gas that the only relief was to vomit.  Because that went on for about 5-6 hrs., I thought MAYBE the pork had gone bad.  Good guess but today on an empty stomach, I had a piece of cornbread and VIOLA!  the very same full of gas, need to be sick situation is here.  SO...I can join the rest of you in learning what to avoid but my gosh....what does one do if this happens gain???  Antacids don't help and it HURTS!!

Consider getting tested for celiac disease.  Having a formal diagnosis can help in so many ways (long-term hospital care, etc.).  

Learn more at this reputable site:

Open Original Shared Link

 

[GFinDC]

19 minutes ago, Renee Pearman said:

This HAS to be gluten intolerance.  I'm 65....I didn't know it could develop and sometimes leads to lactose intolerance.  Three nights ago, I ate half of a burger bun with roast pork and suddenly my stomach was so full of hurting gas that the only relief was to vomit.  Because that went on for about 5-6 hrs., I thought MAYBE the pork had gone bad.  Good guess but today on an empty stomach, I had a piece of cornbread and VIOLA!  the very same full of gas, need to be sick situation is here.  SO...I can join the rest of you in learning what to avoid but my gosh....what does one do if this happens gain???  Antacids don't help and it HURTS!!

Hi Renee,

You can try peppermint tea for gas relief.  It helps some people.

[Bananasbananas]

7 hours ago, RMJ said:

In the US in most states you can order and pay for some blood tests online, then go into a lab for the blood draw. Mymedlab.com, walkinlab.com are two of them.

Yeah I used true health labs. My state actually was one of the blacked out states, but I drove an hour to a draw center out of state. Then I brought he labwork to my primary care and he wrote the referral for the gastro right away. 

[fletcher96]

9 hours ago, knitty kitty said:

If you've been supplementing with B12 for the past week and got your B12 levels tested just recently, the test may not be accurate.  One shouldn't supplement two to four weeks prior to testing.  

You might consider stopping all supplements until you see a doctor and get tested for deficiencies and ask about appropriate supplementation with a B complex vitamin and minerals.

What advice were you given when you received these test results?  Your new doctor needs to know this.

I wrote a time-line for my doctor to read before my appointment.  I listed the year and my age at that time and major health problems that cropped up (surgery, dental work, vision problems, drugs prescribed, mental health changes, etc.)  I kept each entry as brief as possible, like a medical resume.  My doctor was able to pick out patterns that helped with his diagnosis.  

I sympathize with your experience trying to explain things to the nurses.  I would get very upset, talk too much, bring up things that weren't relevant, and then regret what I said when I saw that "she's a hypochondriac" look in their eyes.  Having my history down in black and white on paper in chronological order relieved me from feeling like I was a blithering idiot (social anxiety) and helped me keep my composure.  And I like to think the doctor appreciated my efforts.  He didn't have to sort through stacks of old records.  

 

I told the NP that I was supplementing starting a couple weeks ago lol she didn't say anything. She probably didn't care. I took a DNA test using Ancestry.com about 7-8 years ago. I downloaded a copy of my raw DNA and uploaded it to the website Promethease last year. For $5, they gather information from SNPedia and match your DNA to specific genes associated with different conditions, including lactose intolerance, MS, eye color, etc. according to scientific studies. It's so much cheaper to get tested at home. I'm glad I have an interest in genealogy! Otherwise I probably wouldn't have done the test. I didn't tell the doctor about the test because I didn't want her to think that I thought I had celiac. I've only had one surprised nurse tell me I made her job easier when I diagnosed myself with three separate conditions and hypothesized a treatment plan lol. She was cool about it, but most other medical professionals are pretentious and get annoyed when I'm right. I brought my records, but the doctor didn't care to look through them.... But that's also a good idea, I get what you mean.

[fletcher96]

5 hours ago, Renee Pearman said:

This HAS to be gluten intolerance.  I'm 65....I didn't know it could develop and sometimes leads to lactose intolerance.  Three nights ago, I ate half of a burger bun with roast pork and suddenly my stomach was so full of hurting gas that the only relief was to vomit.  Because that went on for about 5-6 hrs., I thought MAYBE the pork had gone bad.  Good guess but today on an empty stomach, I had a piece of cornbread and VIOLA!  the very same full of gas, need to be sick situation is here.  SO...I can join the rest of you in learning what to avoid but my gosh....what does one do if this happens gain???  Antacids don't help and it HURTS!!

I know exactly what you mean. :/ I ate like a 1/4 bottle of gas x one time. Another time I got so uncomfortable I looked up how to relieve it. Lie down on your back and hug your knees. It works like 75% of the time. One time I tried a fiber bar.

[fletcher96]

Ok, I'm questioning my sanity now. Maybe these symptoms are psychosomatic. I'm reading a ton on it right now. But since I cut out gluten and tree nuts a couple weeks ago, my heart rate has been gradually declining. Averages beginning with 2/14 - present (3/2): 102, 98, 98, 98, 97, 96, 94, 93, 94, 91, 91, 92, 92, 93, 93, 93. Before this, they have been 100-102 on average per day. And my bumps have gone away. The weird visual hallucinations, dizziness, and brain fog are still present, though. And I don't blow up at my parents anymore. We're all happy about that. Could this really be psychological? Or is there something missing? I attached my results. She did two tests for celiac and TSH and free T4 for thyroid. Here's what she wrote with the results,

Hi Samantha
All of your lab tests are negative/normal. Please see the attached labs.

Your vitamin B12 level is high because you are takng supplements. You can stop taking these.
Your test is negative for a gluten allergy. However, you can always see a GI specialist for more extensive testing that we cannot do at Norris Health Center.
Please continue with counseling and taking your meds. Please talk to your mom about insurance and if your psychiatirst is covered.

Good luck.

 

The Results.docx

[fletcher96]

Basically, she only tested for DGP Ab IgA and DGP Ab IgG. The first was 3, the second was 2. I thought those tests were only given to people with IgA deficiencies? To what extent can I rule out celiac? What do you think?

[Ennis-TX]

On 2/28/2018 at 1:22 PM, fletcher96 said:

I saw two doctors yesterday. Yesterday was supposed to be the best day of my life. The day I find out what's wrong with me. My mom found me a seemingly wonderful new doctor. We watched her video online. She seemed caring, helpful, and personable. I came prepared with past blood test results and a long, long list of symptoms. When she walked in, I held back tears - this was it! Shortly, however, I realized her video did not match who she was. She was distant, uncaring, and impatient as I read off my symptoms. I made the mistake of telling her I had PTSD. She gave me some neurological tests (a few of which I didn't do so well on, which I realized when I went home and researched the tests, particularly the Romberg's test). She said I passed all of them. She said I had the physical symptoms of someone with PTSD. I held back tears yet again when she told me to see a therapist. I drove to a nearby strip mall parking lot and cried and cried for ten minutes while talking to my mom, who was also very upset. I was already treated for PTSD. I have greatly improved. She didn't care about my 100-130 resting heart rate (she said my heart rate naturally becomes high when I'm anxious) or the fact I lost 10 pounds for no reason almost two years ago. She didn't care about my pain, acid reflux, brain fog, constant pins-and-needles feeling, non-acne bumps on my forehead and mouth, painful red bumps near my hairline on my neck (she didn't even look at them), hot flashes, migraine headaches, constipation, shortness of breath, tongue sores, lactose intolerance, tree-nut intolerance, GLUTEN intolerance, beau's lines, my abnormal cold feeling, my hair is thinning so much I can't wear it down unless I wear extensions, muscle spasms, bags under my eyes, or blurred vision. I think she was also upset at my use of medical terminology and how I analyzed my test results and seemed very educated. She also smirked when I said I was vegan even though I keep track of all my vitamins, calories, amino acids, etc. on the Cronometer app.... I get everything I need. Plus, this stuff started happening before I went vegan.

For my next appointment, I made the mistake again of venting to this nurse whom I had seen before and thought she was cool. I told her about the previous doctor. She too said I should see a therapist. I have a huge history of type I diabetes in my family, and I told her this. I was so frustrated with the first doctor that I went home and ate half a hamburger bun to prove myself. Part of the reaction occurred immediately. But the worst part happened when I was with the nurse. My blood pressure in the morning was 100/80. Then the other nurse checked it, and it was 142/77. She decided to check my pulse, which was 140. When the NP came in I had to stop talking and told her what happened and that I was having a reaction. I was shaking uncontrollably, my brain was very foggy, and I could barely speak because of dry mouth. I continued talking about my symptoms. I explained my hot flashes and how I would "wake up in a puddle...pool...pool of...blood" - SO EMBARRASSING! I meant to say sweat! But at least she could see I wasn't lying about the brain fog! 10 minutes later, I felt so foggy and out of it. My vision was blurry. I did a 180. Unlike last time I ate gluten, my stomach didn't do too much bloating, which she happily acknowledged when I pointed it out to her. So, the proof didn't work. She said I could be just gluten intolerant (obviously...). She tested my blood sugar, and it was 105. I had eaten a bowl of cereal, almond milk, and half a hamburger bun that day. In October, I saw a different NP at that clinic when I thought I had pin worms. She must've read my file when they didn't find any parasites. I said do you really think the other doctor thought I was lying? She said, well, not lying, but when you start noticing things, you may think you have those symptoms when they're really not important. Probably didn't help that I said no one believed me in grade school when I got stomach cramps after lunch from drinking milk and that the adults and my parents all thought I was faking the stomach aches to go home from school. She said stress and anxiety cause high heart rate. I said even when my heart rate is 90 when I'm asleep (I wear a FitBit)? She said the same thing. She said what happens if the test results come back negative? Well, what do you think? We keep looking! I will not rest until I find out the cause. I thought I had pin worms because I had rectal itching and discharge - something I saw people talking about on this site. Actually, several of my unexplained past issues I have found on this site.

Everyone just thinks and has always thought I'm an emotional, dramatic typical female patient. There have actually been studies on this, where a man and woman both go to a doctor, and the man will be suspected of having a certain ailment which the researchers told them to give the symptoms for, whereas the woman will usually be referred to a therapist for the same symptoms. I've been almost non-stop crying because of this, and I know my story is not uncommon. I even googled the physical symptoms of PTSD and guess what came up - AUTOIMMUNE DISEASES! So, that kind of backfired on them. Hopefully I will have the test results back by Friday. I don't know how everyone else gets diagnosed. Why are other people taken seriously but not me and some other people like me? How can this possibly be dismissed as emotional?

I just got to this thread.....yeah those early years of thinking I was dying going between 5 different doctors with all the bull s$#& and running my bucket list.......you poor thing I want to shelter you and treat you to a safe environment and let you vent.....odd feeling but sometimes when you see a fellow celiac or someone with the same gluten issues, dairy issues etc. You just want to reach out your hand had give them something to grab onto when they are hanging on that emotional cliff grasping at anything they can.....

[fletcher96]

Update: I have fibromyalgia and leaky gut. I'm not anemic, but I am iron deficient. A ferritin level of 29 is iron deficient. I got ferritin retested, and it's now at 39. According to Dr. Jacob Teitelbaum, "Technically, ferritin levels are considered to be in the normal range if they are over 12. This is insane, as considering a level over 12 to be normal will misdiagnose approximately 90 percent of people who have severe iron deficiency as being healthy and normal." Dr. Teitelbaum also explains how iron deficiency contributes to RLS and PLMD, which I have. He also explains how blood testing is ridiculous because it uses two standard deviations to identify who is normal and who is not. Doctors and nurses don't tell you if you're healthy or not, just if you're normal. Doctors hate patients with fibromyalgia because there are no tests to confirm if you're really in pain or not. Usually food intolerances to gluten, soy, and dairy cause symptoms to be worse, which I am quickly finding out. Fibromyalgia develops as a result of stress. It's basically adrenal fatigue. It affects every part of the body.

I am vitamin D deficient (20). I went for a walk today, but it is still so cold! I was thinking about getting more tests for more vitamins at school, but it's all so expensive. I don't want to get pricked with needles anymore either lol. I'm probably magnesium and zinc deficient. One thing I did notice that slightly helped was putting a spoonful of sugar underneath my tongue after I got a reaction from eating soy today. I can't believe I missed fibromyalgia. Though, people with celiac often do get fibromyalgia I heard, which improves on a gluten-free diet. I get it now. Technically, it is all in my head because my brain and nerves aren't interacting correctly. I highly recommend the book The Fatigue and Fibromyalgia Solution by Jacob Teitelbaum. I read it last night. It's these conditions that doctors hate and don't believe are real. The last doctor I saw told me there's absolutely no literature or research to support the existence of NCGI. So, this is why people are beginning to see naturopathic doctors, which that doctor warned me about, calling them frauds. I think fibromyalgia is a choice. I just don't think people are willing to go all in on curing themselves. It takes a tremendous amount of willpower.

Fibromyalgia causes dysautonomia. The last doctor thought there was something wrong with my autonomic nervous system. After all, my blood pressure was 98/68, and my body temperature was 96 degrees! I thought I was anemic, but it's just that my body can't regulate my temperature correctly, making me feel anemic.