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Please Help! (Very Long Post)


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#1 Andi O

 
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Posted 17 July 2012 - 02:05 PM

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,
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
tia xxoo

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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Gluten-light (by mistake-gluten free meal replacement shakes) Feb 2012
Gluten-free May 2012
Dairy-Free June 2012
SDC intro 5 days then Paleo July 2012
*LC-GERD-Hiatial Hernia-Stomach Ulcer
Endo Biopsy neg. for Celiac done in June @23 days gluten-free!
Celiac panel results-neg- test done after 50 days gluten-free!!
Suffering from anxiety, headaches, not sleeping, off balance, numbness, blurry vision, memory loss, bone pain.
Gastro problems have improved since going gluten-free-DF-PALEO.
NEW GI Dr - Awaiting Gene test results

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#2 eatmeat4good

 
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Posted 17 July 2012 - 03:09 PM

Welcome!
What a nightmare...and yes, I read every word of it.
I had to stop because it triggered my own PTSD about having seen 25 Dr.'s in 7 years and ending up staying in bed wanting to die instead of go through the humiliation of describing the symptoms of Celiac through Gluten Fog and Anxiety and Depression from having lived all of it.

You got your medical care.
Unless you want to go back to eat gluten for a few months, which your body probably won't let you do, you are going to have to just accept that you will be gluten free and try to get genetic testing. It does help to take something for the anxiety. Even gluten anxiety reponds to Xanax and it took a very low dose for me...but it helped me think of the next right move.

I'm so sorry all of that happened to you.

I'm glad you came here.

Read all you can and you will heal yourself.
You already are.

Good for you for going gluten free.

Don't worry about the dianosis.
Your body already diagnosed you.
I hope you feel better soon and I'm glad you shared your story.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#3 IrishHeart

 
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Posted 17 July 2012 - 03:41 PM

I read it all, too. :)

Hon, the genetic test is not an answer. It is often used as "exclusionary". Many people carry the HLA-DQ2 and DQ8 genes and do not have celiac. It is not a diagnostic tool, okay?

Your symptoms--and your family history---sure sounds like gluten intolerance to me.

I do not care much about negative testing as this test can be falsely NEG often (my panel was negative, too) but I am a celiac nonetheless. I almost died waiting for someone to "see it".

If you are done getting "help" from doctors and know full well that gluten is causing the problem, then here is the answer: GO GLUTEN FREE.

and for what it is worth, NCGI (non-celiac gluten intolerance) can cause devastating symptoms. too. There is no test for that.

From my research, lymphocytic colitis IS associated with celiac.

What should you do? Either make an appointment with a leading celiac specialist/center (Dr. Green, Dr. Fasano, etc) and wait a few months for this appointment and then, gluten up for more tests....or

Go off gluten and feel better.

Raging anxiety is a symptom of Gluten intolerance ( I had it when I was very ill from celiac disease --it crippled me---and I am not anxious or shy by nature at all) off gluten? It's gone--I am "Me" again!



http://celiacdisease...And-Anxiety.htm

The sooner you cut out gluten, the better you will feel.

Welcome to the fold!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 mushroom

 
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Posted 17 July 2012 - 04:01 PM

Thank you for sharing your story, Tia. Some of us really do have to suffer to get any kind of help. I will not rant on about lack of knowledge of celiac because I have done that so often in the past, but rest assured we know how you have suffered.

But, you don't have to do that any more :) Stay off the gluten and dairy (you will probably tolerate that again at some point down the line) and be well. I agree with eatmeat4good that a low level dose of xanax may very well help you at this point because life and your body have been stressing you out for so long.

At this point, any further testing for celiac is pretty much useless because you have not been eating it to create the antibodies. The genetic test only tells you that you perhaps that you have a gene that one-third of the population possesses which predisposes you to celiac; it is not at all diagnostic unless you test everyone who has the symptoms and they all carry the same gene, so is really not worthwhile bothering with either. And some gluten intolerants do not make the antibodies anyway - they have barely begun to try to figure that one out.

The most diagnostic thing you can do is stop eating gluten and recover. :) Probably about 10-20% of the people posting on this board have no formal diagnosis of celiac - many for the same kinds of reasons as you. That has not stopped them from following this EXTREMELY DIFFICULT (as your doc would have you believe) diet and making themselves well again. If these doctors who think the diet is difficult only knew how easy it is compared to continuing to eat gluten and suffer :rolleyes:

One thing you do need a doctor for, unfortunately, is to order the nutrient blood testing to see what deficiencies you have developed during your years of malabsorption. Vitamin D, B12, folate, potassium, magnesium, iron - and get your thyroid tested too as thyroid problems are common with celiac. In the meantime, get a good multivitamin and multimineral supplement and feel better soon.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 Lori2

 
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Posted 18 July 2012 - 06:32 AM

My celiac panel was negative (after gluten-free for two nonths). I do not have either of the two main celiac genes (my son is a diagnosed celiac).

A year and a half ago I came to two conclusions:

1. I hate feeling like garbage.
2. I do not need a doctors permission to eliminate gluten from my diet.

Forget the testing and "just do it".
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#6 Bubba's Mom

 
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Posted 18 July 2012 - 08:04 AM

I understand the frustration you are going through. Unfortunately, it's common. You've already figured out that gluten and dairy aren't good for you, so stick with it. You don't need a Dr.s approval to go gluten-free.
It would be a good idea to ask for a blood panel to check your vitamin/mineral levels. I hope you can get your Dr. to cooperate?
If not, you can supplement with a B complex, D, fish oil, multi-vitamin, calcium. Check that these are gluten-free. If you are anemic, that should improve as you heal. It's not a good idea to supplement iron unless you have been tested and are anemic.

The gene tests aren't really helpful IMHO. The thinking was that if you have DQ2 or DQ8, you have the ability to get Celiac. Many people with these genes don't get Celiac, and they are finding there are additional genes that link together and form the equivalent of Celiac genes. Most Dr.s don't acknowledge this, so if you don't have the usual DQ2 and/or DQ8, your Celiac will be dismissed and you won't get the DX anyway.

Best wishes to you. If you stay 100% gluten-free you will heal..but it takes time, so be aware that all of your ailments won't completely disappear overnight. It took years to get the damage..it will take months, if not longer to heal.
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#7 squirmingitch

 
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Posted 18 July 2012 - 09:39 AM

I read every word too. And I can't say anything tthat hasn't already been said by all of the above posters. And I agree with them 1000%!

What I do want to give you is humongous

((((((HUGS))))))

So glad you are here. So glad you found out what the problem is. Now, just begin the journey to healing my dear. It WILL get better. I promise. You've taken the first step. Bully for you!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 Andi O

 
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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)- 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? :P

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 :(

Big hugs to you all and best of health to you. xxoo
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Gluten-light (by mistake-gluten free meal replacement shakes) Feb 2012
Gluten-free May 2012
Dairy-Free June 2012
SDC intro 5 days then Paleo July 2012
*LC-GERD-Hiatial Hernia-Stomach Ulcer
Endo Biopsy neg. for Celiac done in June @23 days gluten-free!
Celiac panel results-neg- test done after 50 days gluten-free!!
Suffering from anxiety, headaches, not sleeping, off balance, numbness, blurry vision, memory loss, bone pain.
Gastro problems have improved since going gluten-free-DF-PALEO.
NEW GI Dr - Awaiting Gene test results

#9 Takala

 
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Posted 18 July 2012 - 03:09 PM

First, I read everything (I read fast ;) ).

Second, your malnourishment is causing your anxiety. So take a deep breath. And get those gluten free vitamin and mineral supplements started, if it is permissible with your colitis.

That's actually good that somebody took x rays showing that you do have arthritis/bone problems, because that is another symptom. So is the chronic, severe ob-gyn problems- sorry about that. :(

Third, 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.
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#10 Andi O

 
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Posted 18 July 2012 - 04:05 PM

Thanks Takala, gosh- would there be a problem with the colitis and the liquid vitamins? The juice was bothering my tummy. I do have an ulcer...Actually, my LC problems stopped 48 hrs after going gluten-free>
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!!

Irish, 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 :P xxoo
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Gluten-light (by mistake-gluten free meal replacement shakes) Feb 2012
Gluten-free May 2012
Dairy-Free June 2012
SDC intro 5 days then Paleo July 2012
*LC-GERD-Hiatial Hernia-Stomach Ulcer
Endo Biopsy neg. for Celiac done in June @23 days gluten-free!
Celiac panel results-neg- test done after 50 days gluten-free!!
Suffering from anxiety, headaches, not sleeping, off balance, numbness, blurry vision, memory loss, bone pain.
Gastro problems have improved since going gluten-free-DF-PALEO.
NEW GI Dr - Awaiting Gene test results

#11 Andi O

 
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Posted 07 September 2012 - 10:12 AM

Hi friends! It's time I posted an update. A lot has happened since my last post. First, I did the SCD intro for 5 days and then I went Paleo (thanks Trudy!) and haven't looked back. I got in to see my GP and am on a non-narcotic drug for acute anxiety. It's used for stroke patients. He has been learning about Celiac and Gluten and told me I was doing much better but that my emotional health is hurting my recovery. My brain wasn't working too well at that point because yes- I was very upset that this GI I was sent to screwed up my diagnosis. He wants to see me in a month.

Went to the new GI Dr. Met the nurse and said "Please tell me you know about gluten here" She says "Oh Yes- we know ALL about that evil stuff." Her nurse took my vitals- pulled her chair up to me and said "look honey, you need to calm down, you're safe here. Your BP is off the charts- I am not even going to write that one down, I will take it again after you talk to the Dr." New Dr was wonderful. She listened to me and asked all of the right questions about my family history. She tells me well your biopsy came back negative for celiac. I said I was 23 days gluten free and gluten light since Feb. You should've seen her reaction. (no words needed!) Then I told her the celiac panel was done on me when I was 50 days gluten free. Now they know why I am a mess!
She says we can do 2 things...the first one you're not going to like. Tells me I can do a gluten challenge. NO WAY can I do that with my neuro problems I tell her. She says THEN WE CAN DO A GENE TEST....I almost burst into tears- because I had been begging the other Dr to do the Gene test and here this knowledgable Dr offers it to me!! :)

Her nurse comes back in takes my BP again- much better, and sits with me and says "I have been nursing for 30 years and your BP was one of the highest I have ever seen, you've been through a lot but you have to try to stay calm or you're gonna have a stroke". Okay, I feel better now that I have someone competent on my side finally! Oh and my new GI was waiting on the biopsy results back from old GI Dr and I told her good, I'm glad she is going to look at them because I'm not convinced that other Dr has any idea what she is doing considering the way she messed up my testing!

Since then- the anxiety and shakes come and go. Definitely not under control completely but the edge has been taken off. I still have the shakes and anxiety attacks. Scary stuff.
I went back to my GP again and he gave me a pep talk and was very understanding. I flat out told him the other GI was WRONG and she did not test me correctly and THAT was part of my emotional problem- I told him I am possibly looking at 3 generations of misdiagnosis' and that I am finding it very hard to trust Doctors right now. He was great. He also understands now that the anxiety is part of Celiac and that I'm not crazy. phew.

Waiting to go back to my new GI for the gene test results in 12 more days!!


I've started a new blog and fb page! :) Telling my story and lots of recipes,links and articles on the FB page. Links on my profile ;)

Hope you all have a great weekend! :) xxoo
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Gluten-light (by mistake-gluten free meal replacement shakes) Feb 2012
Gluten-free May 2012
Dairy-Free June 2012
SDC intro 5 days then Paleo July 2012
*LC-GERD-Hiatial Hernia-Stomach Ulcer
Endo Biopsy neg. for Celiac done in June @23 days gluten-free!
Celiac panel results-neg- test done after 50 days gluten-free!!
Suffering from anxiety, headaches, not sleeping, off balance, numbness, blurry vision, memory loss, bone pain.
Gastro problems have improved since going gluten-free-DF-PALEO.
NEW GI Dr - Awaiting Gene test results

#12 Bubba's Mom

 
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Posted 07 September 2012 - 11:04 AM

I'm so glad the new Dr. is better than the last. You would think a GI should be knowledgeable about Celiac? :blink:
I'm glad you got an RX for the anxiety too. Sometimes we just need a little help along those lines. If only we could relax on demand like the health care workers seem to think is possible? :rolleyes:

I got glutened about a month ago. It knocked down the villi that had started to regrow and boy did my anxiety come back full force! I went to my PCP and asked if she could run an iron test because it seemed like my symptoms were just like they were before I started taking iron. Her office told me my iron was now normal, so I stopped taking the iron. (supplementing when not needed is dangerous). I asked that they send me my test results for my file. I was shocked to read that my iron was not normal..it was low. It was flagged, and still they said it was normal. I immediately started taking the iron again, but it will take time to get back to where I was.
The point of my story? Be sure to ask for copies of all test results for your file. You just wouldn't believe how often they say things are normal when they aren't.

Having a good Dr. is so important. Your mood doesn't seem so dire now. You may be turning the corner? Well done!
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#13 Andi O

 
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Posted 07 September 2012 - 12:38 PM

Hi Bubba's Mom,
Thank you for bringing the blood analysis up, my GP Dr wasn't concerned with those results- whatever they test for in the celiac panel. GP Dr said B12 was normal and I remember he said my calcium was 10.9- which is on the high end and concerning to me because my Mom had parathyroid disease and high calcium is part of that. New GI will go over that with me- she was gathering my previous test results. I will ask for copies as well. I haven't been supplementing iron, they always killed my stomach as I'd tested anemic earlier in life. I take a multi-liquid vitamin that has every vitamin and mineral your body needs for the day, I take a liquid D3 and a liquid B complex. Plus oh my gosh- I have never eaten so many fresh veggies and fruit in my life! Winter in the boonies is going to be tough in that dept.

Bubba's Mom, do you know how you were glutened? I don't eat out so if I get glutened it is from my DH being careless with his bread. One time I refilled my water bottle at the golf course from a spigot cooler- got glutened from that! So, I don't do that anymore! I am so obsessive compulsive with being careful, it's OCD for sure.

My old GI Dr- the negligent one? She has none of her patients on gluten-free. NONE. Come to find out she went to medical school in India. They do not have celiac disease in India...my mood is changing because I have verification that she had done me wrong. I am seeking legal help. Taking my power back. If it was a consumer product? I would've returned it. Can't do that with an unnecessary surgery or tests that should not have been run. That Dr was a negligent bully....taking my power back!

I hope your anxiety gets better also! It is the worst part of this and being treated as if you are a crazy person because we have to police our medical teams and question their every move is no help.
I felt like I was living on another planet with that first Dr!!

It's only getting better though...slowly but surely. :) xxoo
  • 0
Gluten-light (by mistake-gluten free meal replacement shakes) Feb 2012
Gluten-free May 2012
Dairy-Free June 2012
SDC intro 5 days then Paleo July 2012
*LC-GERD-Hiatial Hernia-Stomach Ulcer
Endo Biopsy neg. for Celiac done in June @23 days gluten-free!
Celiac panel results-neg- test done after 50 days gluten-free!!
Suffering from anxiety, headaches, not sleeping, off balance, numbness, blurry vision, memory loss, bone pain.
Gastro problems have improved since going gluten-free-DF-PALEO.
NEW GI Dr - Awaiting Gene test results

#14 eatmeat4good

 
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Posted 07 September 2012 - 01:30 PM

I am so happy for you Andi!
It sounds like you are well on your way!
So glad Paleo is working out for you! It makes a huge difference when I "fall off the wagon." ;)
I think you are in good hands now with your Dr. and I am really glad you got some help for the anxiety.
Thanks for the update cause it's really nice to know how things are coming along.
I'm going to have a steak and celebrate for you!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#15 GottaSki

 
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Posted 07 September 2012 - 01:53 PM

Hi Andy!

I just read your original post today - I was near tears - then I got to your post from today and was so very happy to hear the progress you've made with your diet and with your doctor.

It is awful to read about yet another person that went undiagnosed/misdiagnosed for so many years - generations in your case - but how wonderful to hear you are beginning to heal!

I am very happy for you.

Continuous healing wishes, Lisa
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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