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My ordeal dealing with doctors~ Part 2

Repetitive, a post from my Celiac group.  Funny how the people who have it SEE it and GET it

July 17, 2012

This is going to be LONG but I want to put it all out there… thanks in advance for reading and please excuse my anxiety.

Family History
  ~maternal grandmother-never felt well, irritable and mean, body aches, dental problems, memory loss, fibroids,
back and hip problems, unable to lose weight/bloat 20lbs overweight, gall bladder removed, colon cancer tumor, had surgery and thrived
while on a liquid diet, cancer returned and killed her.
  ~maternal great uncle- I know he had eczema
  ~maternal great aunt- died at 6 yrs of age (in the 30’s) from complications of a cut foot. (auto-immune related??)
  ~maternal great uncle- very skinny, unable to gain weight, digestive problems, ulcers, D, eye cancer, tremors, dementia, frozen/fused joints
  ~Maternal grandfather– died of colon cancer (never knew him-but may have had this on both maternal sides of family!!)

Mother– had 2 preemies and a miscarriage, never felt well or could sleep, hysterectomy at age 25, stomach ulcerated
and REMOVED at age 29, dental problems, under weight, parathyroid disease, gerd, graves, crohn’s, anorexia, multiple bowel resections, chronic kidney stones due to parathyroid, osteoporosis, spinal fusions- where they took the plugs out of her hips never grew back in, breast cancer, used to have to get transfusions and be fed via IV in hospital, ulcerative colitis, vision problems, sinus problems, allergies, rashes,cold  sores,B12 shots,canker sores, died of heart failure=we believe- age 64.

Aunt– microscopic colitis, dental problems, gerd, 20 lbs overweight/bloat, allergies, rashes, edema, hysterectomy age 39, breast cancer, heart stint, allergies, hayfever, migraines, HBP, severe costochondritis- where she has had to have 3 surgeries for it, diverticulitis.

Sister– discolored tooth enamel, never feels well- has been searching for a reason why for 10 years. Projectile vomiting and pain
and gas pains when beer and peanuts are consumed.

NOW ME~ premie- 5 weeks early spent first month in an incubator, had to have special formula, every one of my baby pictures
I have a rash on my face, very puffy as a baby, 2 baby teeth/incisors never had any enamel on them, allergies, leg bone pain as far
back as I can remember…when I’d complain the adults (even teachers) would say “that sounds like rickets”. I still have leg bone
pain as well as arm bone pain and restless legs AND arms- mostly hurt at night. Hayfever.  Allergy tests age 4. Allergic to some food items.
~i was told, chocolate, fish, raisins, watermelon, mustard, cotton, cats, bird feathers. <trust me- I was never allergic to these things.
I never got sick from any of them. Tonsilitis age 6 and tonsils removed. Terrible eczema- so bad I had to be treated with steriods and
strong cortisone creams and dermatoligist treated with uv tanning type booth (1978?). Every time I have been under an incredible amount of stress-I have become VERY sick. (usually in september? Vitamin D related?) For years I have believed that there was something auto-immune going on with me. I remember blood tests with high white blood cell counts and anemia.  I have also ALWAYS had a low temperature.  Just thought that’s what my body did, doctors have never addressed it.
11th grade very sick- mono, ebv, ear infections, eye infections, eczema bad, bronchitis, laryngitis, very low immunities…kept getting
sick. Monthly pain. 3 weeks of my cycle every month!! <very painful for years i suffered.                                                                                               Father bought a pizza place and I worked there 4 years, during this time I lost 2 layers of skin on both of my palms and had to get uv treatments and back on the cortisone creams and couldn’t get my hands wet for 2 months- even wore gloves in the shower and to wash my hair.
  Went through sickness and anxiety a few times and sought help from at least 2 GP Doctors- one told me to take nyquil and sudafed. yeah thanks.
  My anxiety goes back to childhood- I remember “freak-outs” when storms were approaching ect. I never knew it was ANXIETY, I always said I couldn’t handle stress- and that I was  stressed. I have been to multiple doctors and have held up my hand and showed them the shaking-from stress.  I also have PTSD from my mom ODing in front of me at age 13. She died on the way to the hospital but they revived her. She was tired of being sick.
  Got a job working for a cookie bouquet company as a decorator and many times I baked. I was immersed in gluten for 7 years.
During this time stress hits again tell my GYN I don’t feel well- monthly stuff is bad. He decides to do a laproscopy to look for endometriosis
– that’s what he suspected was causing my pain. I never stopped bleeding after that and had to have my uterus remeved at age 38- GYN said it looked like swiss cheese- (Now that right there tells me my body was attacking itself/gluten in my blood!!)
Back to see him tell him I’m still not feeling better, he says I am anemic to take iron fe and he sends me to a reumotoligist.
Reum Dr looks at me and asks why are you here? Takes xrays and says I have degeneration and arthritis in my lower back and hips. I don’t believe he did any bloodwork on me at all.
  Meanwhile, I go to chiropractors and massage therapists for deep tissue work to relieve my pain. During this time new chiro does xrays
and tells me I have the degeneration of someone 60 yrs old in my lower back- I am 39 at this time.
Undergo a bunch of stress again and the digestive problems start. Stomach pain, D, C, vomiting, nausea- the only thing I can tolerate is
saltines and milk. (yeah- i know) So, I get sent to new GI and he asks me about dairy and wheat. I tell him that’s all I can eat right now.
So he hears my mom’s history and thinks there is a link. Gives me some meds for nausea/d and tells me to wait until next flare and we’d do a colonoscopy.
  Oh, he did perform sigmoidoscope (sp?) in his office and wasn’t able to see anything.
  So I moved- 160 miles north and lost my health insurance in 2005. I have been treading water. I can’t go out without getting sick- whether I touch the grocery cart- then my face and get a cold sore and glands swell in my throat-or I am around someone who is sick. I swear all I have to do is look at someone that is sick and I get it.   Every time I ate out I got sick also.  Unable to work since moving here to the boonies. Gave up caffeine and stayed away from MSG. Pretty much became a hermit. Can’t work- not enough good days. Still having digestive issues- colitis flares. Have had to have 7 crowns in the last 2 years and dentist isn’t done yet.

   Under extreme amount of stress this past christmas (2011) and my health implodes again. Have new insurance- kicked in in Feb. Try to get into see a local Dr in town and I’m accused of drug shopping!! GMAFB!! I haven’t been ON ANYTHING EVER!! (except after surgery)
So, I reach out to my chiropractor up here and she sends me 30 miles south to a GP doctor. 5 weeks to get in for an appointment.
(I live rural if you can’t tell) and at this point in Feb, I should’ve been in the hospital. I could barely stand on my own have had water D for almost 8 weeks at this point. I was very weak and shaky and having freddy kruger knife pains waking me up every morning for 6 hrs a day had D..I was so very sick.

I decided I had to get well or I am going to wind up in the hospital. I have DH bring me meal replacement shakes. Then I switched to these protein shakes that I blended with milk and ice–yummy I can drink those. Still eating a bit but mostly drank a whole blender full of these shakes a day- and I get my strength back. (IMPORTANT SIDENOTE- those shakes I was surviving on? were gluten free!!)
Still sick with D and knife pain every day from 4-6am-12-1pm every. day.
GP Dr sends me to a GI.

~~THEN THE NIGHTMARE BEGINS~~

I wait ANOTHER 5 weeks now- so it’s April. Telling new GI my history and she walks out and sends her nurse back in to finish with me.
RED FLAG #1. Schedules me for a colonoscopy. Okay. that was a nightmare- they call you before hand and ask you questions on the phone.
I’d spent 45 minutes doing it on the phone earlier in the week. Get to the hospital and they cant find my info. So they need to do it all over again.I was almost an hour late for the surgery. When I woke up someone tells me suspected Celiac and I say but wait- all I can eat is saltines…and a voice in my head says-but you’re not getting better. GI says she will see me in her office in 20 days. Nurse who wheeled me out tells me her grandson has it and says “Oh honey you will feel so much better after you stop eating gluten.” YOU KNOW WHERE THIS IS GOING NOW RIGHT??!!

So, I went home and stopped eating gluten.

I am having pain from this painless colonoscopy- feels like GI took a strip out of me lower left way down by pelvic bone. I usually take peppermint/fennel/ginger pills for gastro pain and they’re not touching the pain. If it was INSIDE it would’ve helped
my pain. Can’t take anything after surgery so I used ice and it made it feel better. Within 48 hours of stopping gluten I had my first normal BM and no gas/knife pain. So, decide I’m staying away from the gluten. That’s when I did research and see that I have had all of these symptoms my whole life as well as my other family members of the same lineage!! No doubt in my mind I HAVE THIS.
20 days pass, still in pain from that colonoscopy. I go to GI office appt. She tells me she hesitates to diagnose me Celiac because “It is a very difficult lifestyle” 

 EXCUSE ME? My body attacking itself, losing body organs and family members is more difficult than going gluten free!!??

Tell her AND her nurse I am in pain from the surgery still and she says hmmm…and completely ignores me!! I also told her nurse!! THEY NEVER EVEN EXAMINED ME. Okay- now I’m pissed. She tells me biopsy says I have  Lymphocytic colitis. I ask  her, but what about the celiac?? I have this-I stopped gluten and have had no D or pain since!! I have this-and it killed my grandma and my mom!! SHE TELLS ME TO CALM DOWN. Then she says okay I will do a endo biopsy on you on monday. I say why haven’t you tested my blood? I have been gluten free since you told me about celiac after the colonoscopy.
Ignores my requests for blood tests. So Monday is my endo surgery.  SURGERY #2 and no bloodwork.

 I came home and joined a group for lymphocytic colitis–they have helped me more than anyone else at this point!!
Get to the hospital and request to speak to a patient advocate BEFORE my surgery in case anything happens from being injured in the first surgery. The head nurse who took my report says it may have been scar tissue. Well- people at my LC group told me that in 20% of people the outside of your colon can tear. THAT’s what happened!! That’s why I felt a linear strip-
because they were in a hurry and overinflated me. The nurse looked at the area and can see visable swelling there-much more so than the other side- it’s obvious- AND THIS IS 23 DAYS LATER!!

So off to surgery I go again. Oh I may add that both times they documented my extreme anxiety before the surgeries and tell me I need to have that treated. Everyone (including the nurses and anesthesiologists ) I speak to agrees with me that I have Celiac disease- my family history is too strong for us to ALL have a wheat allergy.
Wake up from that surgery and GI tells me she’ll see me in another 20 days (70 mile trip) in her office. In my drugged state I say test my blood there is a gene test. Test my blood-why aren’t you testing my blood!? She ALSO told me I didn’t LOOK sick- that when people were malnourished that you can tell by looking at them.
I had brought my cans of meal replacement shakes to show her what I had been surviving on and she never even looked at them- IGNORED ME AGAIN.
After that ordeal- I had a break down (or 2 or 3) I called my GP office practically hysterical and told the nurse the whole story. Say I can’t take this roller coaster ride!!  I DIDN’T KNOW THAT GLUTEN WITHDRAWALS ARE LIKE GOING OFF OPIATES AND I WAS IN WITHDRAWAL- LET ME TELL YOU- THEY SUCK- IT’S A WHITE KNUCKLE ROLLER COASTER RIDE.
She says she will speak to GP- she then calls me back and says he won’t see me until GI signs off on me. FML!! So she says she will call GI office and the GI office will call me to treat me. NO ONE CALLS. I want to drive my vehicle into a tree. No one is helping me,
no one will check my blood to see where I am deficient so I can begin to heal.  Seriously. Desperate. Gluten withdrawals are horrible. I had nausea, shakes, anxiety, depression, no sleep, deep sleep, body aches, bone pain, numbness in hands-arms-feet,dizzy when I stand up, tremors and the memory loss and brain fog- just climbingoutofmyskin anxiety!
Also- had been driving and blanked out- where am I and where am I going- leads to panic attack while driving. (my nerves are fried!!)

So I made my DH take me to the next GI Dr appt. GUESS WHAT??!! BIOPSIES CAME BACK NEGATIVE. Shocking right?? I was gluten light for 2 months (spirutein is GF and I was drinking a quart of them a day and on minimal food) then gluten free for another month. I tell her I HAVE THIS- MY MOM AND GMA HAD IT AND THEY ARE DEAD. She tells me that going gluten free is a difficult lifestyle (again)
and I tell her it’s not that difficult. I then tell her about my LC support group and they say to give up dairy in order to heal and so I told her I gave up dairy as well.
She tells me that giving up both at the same time is too difficult. OMFG!! I tell her I am trying to get better and in order to heal your gut people have to give up gluten AND dairy. She doesn’t want me to do that. She says someone of her culture will never get celiac disease (like I care- she is from india) SOMEONE of my heritage will get it lady!!

Now I realize she went to medical school in Calcutta-India. She doesn’t know Jack squat about Celiac and she has screwed up my tests.

Oh I have lymphocytic colitis- Gerd- Hiatial hernia and a stomach ulcer. I have been prescribed Omperazole.
(I am not taking it) All of the above are symptoms of Celiac Disease. I begged her to test my blood. Tell her again that there is a gene test. She tells me that the tests are very expensive (see a pattern here? she just wants a patient!!) finally she agrees to do blood work. Orders me a full celiac panel–which we ALL know will come back negative! All I needed was the friggin gene test. So with that test- she tells me to get into my GP to get treated for the anxiety.
Waited 2 weeks for the blood work to come back and called my GP. Tell his wonderful nurse the whole story again. She has also been sent to same GI and still having the same problems as me–now she thinks she may have celiac also and this GI missed it in her also!! So I made an appt for this week.

 Today she calls me and says she told GP the whole story and he knows nothing about celiac or gluten free and so he can’t really help me. Meanwhile my anxiety is through the roof again!
Nurse is trying to find me a Celiac specialist. All I need is for someone to look at my medical records- at the WHOLE BIG PICTURE and SEE!!
It’s all there in black and white in my medical files. Also- my mom had her records attached to mine because she knew we’d need them.
Now what do I do??!! I’m tired and ready to give up 😦
H E L P

edited to add that I have given up caffeine, pop, alcohol, quit smoking (wasn’t a heavy smoker 4-6 a day) gluten, dairy. Have been avoiding soy, onions and mushrooms the past few weeks also.

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Posted 18 July 2012 – 11:36 AM

Thank you all for reading and coming to my rescue. Big Hugs back!! (i just wanna cry)
I have been trying to get my blood analyzed, I have asked and asked. The GI just took my blood 2 weeks ago (end of June)- AFTER  50 DAYS OF BEING GLUTEN FREE.  She ran a celiac panel (5 vials) I’m not sure how much analysis is done with that, what they check for? I had already been gluten-free since May and I was gluten light since I was mostly surviving on the meal replacement shakes since Feb.I do have some liquid B12 that is gluten free but have been trying not to supplement until I get an analysis. I do take omega3 caps and when I have bone pain I take a D3. I also have this other wonderful miracle liquid vitamin drink that I have been taking for years-until I couldn’t tolerate the juice this year in my volcano gut. It is a liquid mixture of every vitamin and mineral your body needs each day. THAT is what has kept me going for the past couple of years.
It’s so hard doing this all on my own-my brain hurts. I am trying to do everything right–I just want to get well! I know I am in control of that but I need help and I can’t seem to find a Dr that will help me at this point. I have given up all of the bad things in my life (including toxic people) I quit watching the news in Feb, quit reading facebook feeds (no drama) and I even seem to get over stressed lately (gluten withdrawals?) if I spend too much time outside. It’s like sensory overload.The good news I have today, -I’d love your feedback- My GP (who won’t even see me or treat me because he knows nothing about this disease-grrrr!!) his nurse has been helping me. She was sent to same GI and she is no better and also having the same symptoms as me. So, she found a gastro/hepatology office that has a TEAM of 4 gastros. 🙂 That and the fact that they work with blood, maybe they can help me?? It’s either that or go 200 miles south to UofM and I don’t have the funds for that trip number one and wth can they do anyway- I am not willing to eat gluten just to get a positive test. Thinking that one of these 4 doctors has to know about celiac and will be able to analyze my blood work? One can dream right? The Dr she mentioned sending me to is a DO. That’s good right? Aren’t they into whole body health? That’s what I am about- the big picture!Worried about this anxiety thing. My nerves are shot and the doctors are making it worse. Dr’s at the hospital (anesthesia)
both said my anxiety needs to be treated and so did the GI Dr. Any home remedies for that? 😛 As I said before, I don’t find the gluten-free eating that hard. I already had given up eating out- I was getting sick every time. What’s hard is losing organs and family members :(~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
That GI never even spoke to me about the lymphocytic colitis. The day she scheduled the endo biopsy, she tells me I have the LC and says, “I’m not even going to speak to you about the LC until after the endo biopsy”. And she never did. I was given the diagnosis’s of GERD, Hiatial Hernia, LC and stomach ulcer and she gave me Omperazole. Told me that if I felt better not eating gluten then don’t eat gluten. Don’t give up dairy yet, too difficult-see you in 8 weeks. I insisted she test my blood, Told her I wanted the gene test and to know where I was deficient so I could supplement. I told her I was trying to get better. She tells me the celiac tests are very expensive and I told her I have insurance?? She ran a full celiac blood panel. My GP Dr has those results…I get so mad!! That lady was a nightmare. Hoping the new GI Dr who is also a DO (and they’re Hepatology specialists!!) will be my regular Dr. Fingers crossed.The nurse helping me has spent quite some time on the phone with me. She is also having the same symptoms and went to the same GI and is still no better. She is being treated for chronic headaches and has the gastro issues and also has family members with celiac symptoms. She also has a problem with dairy! You all know what it’s like when the lightbulb goes on and it’s like OMG this is me!! Well, she’s right there with me. Crazy. I know what you all mean when you say I see celiac people– I do too!! I want to help people and I want them to get the right testing and I want to spur these stupid doctors
to get with it!! grrr!!    Iri**, I agree with you that LC is also a Celiac symptom! (My Aunt has it as well) Thanks again- gonna drinky some vitamins…anything to stop the anxiety 😛 xxoo
 
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I have received some excellent advise from my support group members- THEY KNOW MORE THAN MY 2 DOCTORS DO~~
from one of my group members~
 
You may get tested, and tested, and tested – from the top, bottom, and by blood- but you may be negative per tests, yet have a real, true problem with gluten. So listen to the nurse who is trying to help you, and your colitis support group, but at some point, after all this testing, testing, testing, you have to take charge and go ahead and do the correct thing, whether somebody with the Medical Diploma on the wall agrees with you. Any person who tells you to eat something that you KNOW makes you sick, by your own self-testing, is not to be trusted with your health.
 
Next to Begin My Healing Journey with my probiotic drinks-water kefir.  Eat real food- no grains-no sugars-nothing processed. 
 I started with the SCD Intro- Chicken soup for healing and very well cooked carrots.   High protein for healing.   That’s where you start.  xxoo

Introduction- PaleONeil

ImageDiscovered I have NCGI (non-celiac gluten intolerance) Well, no- I have CELIAC disease but the Dr failed to prove it because of her ignorance on this disease. There is a specific protocol to follow.  She fuc**d up. I find it impossible to believe all of my family members on this side of my family have had symptoms and that we ALL just happen to have an intolerance. Impossible.  I am on my own journey to heal with minimal help from the medical field. I will also be crusading to push Celiac Awareness especially throughout the medical field.  I have been to numerous doctors-MD, Rheum, GYN, Chiros, Dermas and dentists and they ALL should’ve seen the signs of this disease that I have had my whole life-since birth!! Misdiagnosis after misdiagnosis.  My Mother also had it and was put through the same misdiagnosis’ put through surgery after surgery- she was also undiagnosed for Celiac but every other disease she had was a symptom of Celiac- just like me, just like my Aunt-her twin. Mom died at age 64. Her mother was also undiagnosed her whole life. She died from colon cancer. Undiagnosed Celiac disease leads to colon cancer…
So I have lost family members and body organs, been violated and injured during un-necessary surgeries leading me to give up on the medical profession and take matters into my own hands.  This is my journey.  I hope it helps other Celiacs and my best healing wishes to you.   We can get better.  xxoo

~Grain free-gluten free-hfcs free-soy free-sugar free-processed food free-No GMO’s.  Dairy very light- scd 24 hr greek yogurt/hard cheeses.   It’s called eating REAL FOOD and it is what you have to do to heal the leaky gut. 

IT IS BELIEVED 1/133  PEOPLE HAVE CELIAC DISEASE  97% UNDIAGNOSED

Please read this link ~  http://www.triumphdining.com/blog/2012/08/06/mayo-clinic-study-finds-celiac-disease-largely-undiagnosed/