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What A Day

deesmith

By deesmith
in Coping with Celiac Disease

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deesmith Apprentice
deesmith
Posted

I had an appointment at beginning of April with Dr. Green at Celiac Center. Long story, but my genetics test came back positive and basically stated that the positive result "along with symptoms in this patient is consistent with diagnosis of celiac disease". My main symptoms being malabsorption issues.

So Dr. Green ordered more tests (bone density, etc) and said I could have them done locally. However, after fighting with my Primary Care physician for 2 weeks, her secretary called me back today and said "she won't even send you to a specialist here at our hospital, and she won't order any of the tests"!!!! She's mad I went out of network. But I asked her last October to run all the bloodwork for celiac and she wouldn't. :angry:

So I came home, tried hard not to cry, called 3 different physician's office before I found one taking patients and he can see me tomorrow morning at 10:00 a.m.!! It sounded positive on the phone, I'm hoping for the best.

Then at work today, we had big meeting, with more food. I forgot about it and didn't pack much to eat. I finally told my boss last Friday I'm on a gluten free diet. Today she said, "well you can take the stuff out of the wrap and eat it".

Needless to say, I didn't. I went hungry. I learned the hard way--- always have a stash in my desk. I don't know how many of you have suggested that on here. Now I know why.

I'm so sick of doctors (except Dr. Green-- he' great) and so sick of trying to explain about eating (so I don't) I'm tired and frustrated today.

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Nantzie Collaborator
Nantzie
Posted

What a lousy day you had. Doctors can be jerks just like everyone else. Consider HER fired, not you. Remember, she works (worked) for you. We wouldn't put up with a lawyer, a dentist or an accountant dismissing our concerns or not taking care of what we go to them for. But we all seem to put up with doctors doing stuff like this. A lot of people end up taking the doctor's word and not doing any researching on their own. You've taken your health into your own hands and your life will be better for it.

Nancy

blueeyedmanda Community Regular
blueeyedmanda
Posted

I am sorry to hear you are having a rough day. I have learned to, always have a stash on hand. It is hard to explain gluten free to people. I hope things get easier for you. You will fall into the routine and things will get a lot better. It is great you are trying to learn about the diet, we are here if you need us.

wolfie Enthusiast
wolfie
Posted

Sorry that you are having a tough day. Your PCP sounds like a real piece of work. I am glad that you are looking for a new dr and have an appt. already. I always try to keep at least some candy or nuts in my purse so that if there is food some place that I can't eat, I can munch on something.

((HUGS))

miles2go Contributor
miles2go
Posted

Yeesh, that is a bad day! You remind me of why I am so happy that I still paying a bit extra to be on a comp care plan where no one except myself orders tests for me. I learned the hard way about always keeping a stash, not just in my desk at work, but always with me. I went on a day-trip with a friend last fall and didn't bring enough food because we had planned to go out to eat after our hike. Well, friend decided that she didn't want to go out to eat after the hike and even though we'd last eaten six hours ago and it was 1 1/2 hours home and low blood-sugar, yeesh...

Hope you remember this day in a positive take-charge kind of way. I don't know if everyone has the opportunity to switch to comp care health insurance these days. I kept mine when they tried to get us to switch over so long ago, but if you can, I'd definitely recommend it. Oh, and I have a vegetarian boss who is quite sensitive to my food needs and tries so hard to bring gluten-free stuff to every food event. She has succeeded a number of times, but has taken a while to get it. Last event she made these marvelous gluten-free peanut butter cookies and gave me the recipe on an index card. For Christmas she made these wonderful chicken enchiladas, carefully researched the tortilla options with me beforehand and the couple of bites that I took of the WHEAT enchiladas were glorious before a coworker said, "um...Margaret..." God love the bosses who kind of get it and are trying, though. Give your boss some time. I think/hope she might come around eventually. :)

Margaret

deesmith Apprentice
deesmith
Posted
  • Author

Thanks everybody for your support!

Today seems to be going better.

I agree with Margaret, I do think I have a good boss and she will come around. It takes time.

I had my appointment with new PCP. I just got back and stopped by home before heading back to work. It went ok. He's going to order the tests that Dr. Green ordered. In fact, he drew blood today for the Vitamin D test. So far, it's ok.

He did say one thing that made me have another question, but that's for another post!

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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • knitty kitty
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      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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