Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What A Day

deesmith

By deesmith
in Coping with Celiac Disease

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.