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. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    5. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748
    jimiiiii
    Newest Member
    jimiiiii
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • 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.