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Marilyn R

Member Since 10 Aug 2010
Offline Last Active Nov 08 2014 08:40 PM
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#776048 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by Marilyn R on 24 February 2012 - 04:52 PM

Yesterday at my office visit, my D.O. was reviewing my blood work ordered by a neurologist in the same medical group about four months ago.

She said she didn't know how to interpret the results, but it looked like I could be positive for Lyme Disease. She said "I never order blood tests I don't know how to interpret", then proceeded to tell me that her 12 year old daughter had lyme disease, with the rash, six years ago when they lived in the Northeast, but DD had been treated and was fine. Doc said she would call the Neurologist to discuss interpretation of the Lyme Disease panel and call me if I needed to do anything.

I bet any mother on this forum who had a child with Lyme Disease would know how to read the blood draw results.

I received a call from her office today. They said I needed to pick up a prescription they'd called into my pharmacy for antibiotics and referred me to an infectious disease specialist. I told both the Neurologist (in the visit when she announced she was ordering the test 4 months ago) and the D.O. who reviewed the results that I didn't have any signs or symptoms of Lyme Disease, hadn't lived in an area known for Deer Ticks for over 35 years.

I did a quick internet search and it turns out if you have high levels of antibodies or an autoimmune disease or are older, false positive Lyme Disease blood work isn't uncommon. I don't know if it's a charm, but I represent all three categories.

I didn't pick up the prescription.

In the same visit, she told me that something I bought in a Health Food Store couldn't hurt me. She said if it was sold in a Health Food Store, it was benign, couldn't hurt me, otherwise it wouldn't be allowed by the FDA to be sold in a Health Food Store. I don't know how, but I stifled myself. I'm fed up with doctors! In this neck of the woods, they're bull-headed and uninformed, and talking to them is like talking to a wall.

:angry:
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#774613 Anyone Else Lose All The Friends?

Posted by Marilyn R on 19 February 2012 - 06:27 PM

Yes, I've experienced the loss of friends. I was so sick for so long, and they kept calling me and I kept saying no. I'm pretty sure they got sick of being turned down. I felt guilty about saying "No" so often.

When I started feeling better, I didn't want to risk going to restaurants or bars to socialize with my old friends, and on my first few social occassions I know I was awkward.

I met some neighbors while walking our dog. They introduced me to other neighbrs and I introduced them to some too. (Granted, I've lived in this neighborhood for 11 years.) My new friends don't have an issue with me being gluten-free, it's what it is. They know the person I am now and not who I was then. I still love to have fun, but I have a few parameters.

We've saved money by not meeting (old) friends in restaurants or bars. A typical Friday night three years ago was about $40 at the bar (a couple of appetizers, a few drinks), then a stop at the pizza parlor for a $15 pie.

A typical Friday night now is a visit with the folks in the neighborhood and an $8 frozen gluten-free pizza, doctored up a bit. I'm happier now, feel more mentally adjusted, sleep better, and appreciate my dp and dear dog so much.



It really hurt to lose my best friend Annette, but I understand why I'm not a fun person for her to be around anymore. We just don't share the same interests.
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#774439 Expensive

Posted by Marilyn R on 18 February 2012 - 05:55 PM

The OP has not replied, but I'm loving this topic. I look for what's on sale and buy in bulk when there's a good deal. Next month corned beef will be on sale. I love corned beef for breakfast with fried onions and potatos, or with steamed cabbage and taters, or with saurkraut. And you can make a mean gluten-free Ruben fairly easy.
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#773767 Expensive

Posted by Marilyn R on 15 February 2012 - 04:46 PM

Flowersmom,

If you send me a private message with your addy, I'll send you a care package for your little girl without oats, tomatoes, eggs oranges, bananas or corn.

I also suggest calling your school system to inquire if they have a social worker on staff for the school district. The SW could have more local resources.

Marilyn
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#762401 It's One Of Those Days/weeks/months :(

Posted by Marilyn R on 04 January 2012 - 07:47 PM

Take a long soak in the bath (adding epsoms salts and baking soda is good.) I like about a cup of salts and about 1 1/2 cups of baking soda in really hot water. And then get your mind around eliminating dairy for awhile, and what you can do with that. (It's not that hard.) There's still so many really good things to eat!
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#756535 Christmas Dinner And My Mom

Posted by Marilyn R on 13 December 2011 - 07:30 PM

There's a really good chance that either your father or mother has celiac disease, since both you and your sister have been diagnosed. My mother was diagnosed but chose to be non-comopliant with the diet and deal with the consequenses. (There was a laundry list of consequenses.)

I know it's hard, but since you were so recently diagnosed, I'd suggest bringing your own food because you've committed yourself to healing your gut now, and improving your health.

It helps to pack a small cooler (a soft sided one with a long strap is perfect because you can just sling it over a shoulder). For holidays, I usually make a salad that can be shared (with a separate portion for me), homemade salad dressing, a pre-cooked sweet potatoe and a protein that can easily be microwaved or pan fried.) (Like a slice of ham, or a pre-cooked chicken breast.)

It's okay to be a "picky eater", even if you never were before. If anyone gives you flack about bringing your own food, remind yourself that you're doing it to preserve your health and to be there for your family when they need you. I might even pack a separate serving of the soup in a little thermos or somthing to heat on the stove or microwave, but that may be unnecessary.

As for your father, it sounds like Mom rules the roost. I would try to talk to him separately, and not during the holidays if you lve nearby.

Good luck to you. I don't know if it will help or not, but my standard reply when somebody wants me to eat what they cooked for the holidays is, "I know that's so good, wish I could try it." Then remind yourself that the holidays are not about food. It is all good.

Wish you well.
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#756253 Foot In Mouth Disease! Lol

Posted by Marilyn R on 12 December 2011 - 07:30 PM

You didn't say or do anything wrong, I promise. And the ham should be fine, but it would be worthy checking out what ham and where it's going to be cooked and servrd. I got slammed by ham at our holiday party because it was cc I think.

Nobody else voted for fried chicken over ham, right? I'd be concerned if they were picking up the ham at the fried chicken joint, but that could just be me.

All things in perspective, I'd just rather bring my own food and forego the week of misery. :ph34r:

But you didn't say anything wrong, and don't have hoof in mouth disease at all. :D And you don't have to eat that ham unless everything checks out (calling the caterer, looking at how it's preseented. The worst thing for me was feeling like they had a speacial menu for me that I was obligated to eat what was provided becusase they made it specially for me.


You should never feel obligated to eat unsafe foods. Nobody else in their correct frame of mind would. TThat's my two cents.
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#756239 The What's For Dinner Tonight Chat

Posted by Marilyn R on 12 December 2011 - 06:39 PM

I'm suspecting that the cake turned out fine, but please keep us appraised! ;)
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#756203 The What's For Dinner Tonight Chat

Posted by Marilyn R on 12 December 2011 - 05:15 PM

That is so cool, Alex, she's learning how to read, how to cook, and she's a mere five years old. :)
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#755376 Peripheral Neuropathy

Posted by Marilyn R on 09 December 2011 - 06:20 PM

interesting. I posted a topic a few days ago asking if I had MS because I have experienced most of the symptoms for the autonomic system.

I have had bladder issues, reflux, no hair loss on legs but definitely brittle and ridged nails (toes mostly).

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor
if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??


Just wnodering if you've had your vitamin D levels checked lately, or any other blood work up. (Mushroom is a whiz at telling you which ones you shoud request, btw.)
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#755374 Peripheral Neuropathy

Posted by Marilyn R on 09 December 2011 - 06:14 PM

I keep coming back to this thread because I find it so interesting. Sorry to those of you who have read this before, but somebody from my home town told me that they saw my mother drunk, staggering downtown. Mom was a devout Christian and never drank alcohol, never smoked, was an RN. The first signs of cc are neuropathy for me, and it was the first symptom that presented when all of this first started happening.

My neuropathy has improved so much on a strictly gluten-free diet. I'll probably never run up or down a flight of steps again, but I told my neurologist I didn't want to come back for a year because I'm doing better. I can ride my bicycle, run etc.

Mom couldn't come to terms with the diet and ended up being wheelchair bound for several years.

My oldest brother visited recently and was asking me about the disease. He listened intently and at the end of our conversation asked, "So your choice is gluten or walking?" He's an accountant, I kind of like how he cut to the chafe.
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#754411 Going Dairy Free

Posted by Marilyn R on 06 December 2011 - 06:20 PM

I keep going back and forth from dairy allergy to not; however, the symptoms say allergy and not intolerance. There is a lot of overlap in the symptoms; however, the bloody sinuses and extreme fatigue leads me more to allergy. A decent test is a week without to see how you feel. That is my goal for this week.


If your gut is bad and autoimmune system is on fire, I'd recommend more time for healing, like six or even (Yikes!) 12 months. of avoiding what hurts you. That could just be my experience though, and it seemed like everything I ate was making me ill. I'm doing much better and reintrducing foods now.

I'm only adding this as friendly advice.. maybe a week work's for you, if so, that's great!
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#753664 Why Do Some People Feel They *must* Have An Endoscopy?

Posted by Marilyn R on 04 December 2011 - 11:02 AM

I looked in the eyes of a woman is her late 60's several months ago. She worked in medical records and I needed medical records.

I saw that "dead" look I used to see in the mirror. I asked her if she had IBS, and she asked me how I knew. I talked her into going gluten-free. She called me a week later and told me that her GI told her she didn't have celiac disease and it would be crazy for her to continue gluten-free.

In three weeks gluten-free, she was able to do things she hadn't been able to do for quite awhile: grocery shop, attend church, cook, really basic things. I suggested that she tell the GI to think about how she'd been going to him for several years and all he came up with lactose intolerance and IBS, now she had no IBS.

Months have gone by.

I'm still in contact with her, and she says she can tolerate gluten in small doses now. Like a slice of Italian Bread once a week.

I saw her last week and she had deep, dark circles under her eyes. I didn't say a word about gluten. You do what you can. She got out of a crisis, maybe she can tolerate gluten and the gastro was right. Maybe not.

But there are so many other foods, I don't get it either.

My mom was dx with celiac disease and always blamed her D on the lettuce, and said the doctors were wrong about wheat. She'd wheel into BK in her wheelchair (couldn't walk anymore) and order a burger without lettuce. :ph34r:
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#751947 Still Angry Sometimes After 2 Years

Posted by Marilyn R on 29 November 2011 - 05:11 PM

According to The University of Chicago Celiac Disease Center, "An average child visits eight pediatricians before being correctly diagnosed." Those statistics make me sick, and angry. I don't have children due to infertility, and applaud you mothers who figured things out on your own through research and trial.

We all know you aren't doing it for the fun or convenience of it! :) Yay for you!
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#751610 Negative Biopsy

Posted by Marilyn R on 28 November 2011 - 06:27 PM

:) I had negative blood tests and negative Upper GI. You'd have to tie me up and force feed me to stick gluten in my mouth. It makes me sick, and I don't need a diagnosis to tell me that.

My 11 year old great niece has a kidney condition and my niece took her to a locally respected urologist. When the Urologist read the radiology report, he told my niece that the results reported by the radiologist were medically impossible, and referred her to a pediatric urologist and nephrologist several miles away.

My first thought was I wondered if that was the same radiologist that read my biopsy results, but it doesn't matter. It may actually be better to be undiagnosed. A while ago someone posted that they were denied life insurance due to having celiac disease.

I was pretty sure I'd be negative on both tests because I wasn't willing to do a gluten challenge. I finally found out what was sucking the life out of me on my own, and having someone with the initals M.D, behind their name really didn't need to clarify it.

So what do you do now? Do what has been making you feel better!
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