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Andi O added a topic in Celiac Disease - DoctorsPlease Help! (Very Long Post)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.
~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,
severe costochondritis- where she has had to have 3 surgeries for it, diverticulitis.
Sister- grey 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. 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?)
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 couldnt get my hands wet for 2 months- even wore gloves in the shower and to wash my hair.
ffwd- I worked at another profession for 15 years and knew I needed health insurance so I sought out a job with benefits. (I am an artist)
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 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 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. Every time I ate out I got sick also. 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 in
to 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 diffucult 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 tell 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. 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 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!!
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 suicidal. Gluten withdrawals are horrible. I had nausea, shakes, anxiety, depression, no sleep,
deep sleep, body aches, bone pain, numbness in hands-arms-feet, 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 into panic attack while driving. (my nerves are fried!!)
So I made my DH take me to the next GI Dr appt. SO GUESS WHAT??!! BIOPSIES CAME BACK NEGATIVE. Shocking right?? I was gluten light for 2 months 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 symptoms of celiac. 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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