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Andi O

Member Since 11 Jun 2012
Offline Last Active Sep 07 2012 01:17 PM
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Posts I've Made

In Topic: Please Help! (Very Long Post)

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

In Topic: Please Help! (Very Long Post)

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

In Topic: I Got Officially Dx'd Today

18 July 2012 - 05:26 PM

WAHOO!! Congratulations!! I'm hoping for the same outcome with the new Dr I am being referred to. She's a D.O.
So glad you found someone to look at the whole big picture!! :) I agree- it's what we put into our bodies that make us sick.

In Topic: Please Help! (Very Long Post)

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

In Topic: Please Help! (Very Long Post)

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