Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New Here


Joss

Recommended Posts

Joss Rookie
Ok I went to see my new doctor today, but somehow the appointment was made with the test mad idiot doctor instead. Now my regular doctor for some reason abruptly closed down her practise without notice earlier this year. The first I knew about it was when I received my medical records in the mail. Now of course I am left shopping for a doctor that knows nothing about my history.

Anyway I went because I want to join the local Celiac Society and they require my doctors signature. So off I went only to find I was stuck with this guy. First after telling him of the misunderstanding, I explained why I was there. He again wanted to send me for blood tests. I veoted this by telling him I had been restricting gluten for sometime. He still insisted that there would be enough antibodies to test.

I again declined. Then he wanted to know when my first tests were carried out. I was able to tell him the name and address of the doctor my mother consulted in 1953. No good of course, so then I told him I was being treated in Tasmania, but I could not remember the name of the specialist, or even my local GP as that was about fifteen years ago. Anyway that practise too has now closed. I could remember the name of my naturopath but it seems they are not counted as being true professionals. So now unless I can produce enough evidence to prove my gluten intolerence I cannot join the local support group. Makes you wonder why thaey are called a support group and why they are being elitist?

Of course I thought that the doctors could check my blood tests and recognise that I have chronic iron defiencies that remain the same over several years and that they are treating me for osteoporosis and that might be enough. But no, now I have to remember who performed that vital test.

Joss

It's just that I ge flack from members of my family, who think this is all in my head. Because this has been an ongoing problem for most of my life, they think I should be better now.

No way can I convince my daughter that food makes a difference to diseases like asthma, osteoporosis and heavens above, RSD.

I thought if I get a medical diagnosis, then she would understand and let up with the chipping away at me. Yhe latest was last Saturday when she told me that "scientists have said for sure that burping is not in any way connected to food. It is more about how you eat food that causes burping. This gets to me and I am pretty depressed. Also I need more local knowledge and the local society will not accept anyone with any FAD diagnoses. it seems as if they have an exclusive club and wannt to keep it. I feel pretty depressed right now. I have tummy aches and alternative D and C to boot.

Ok so I am just going to get over this. If I get anything gluten free when I am out I get a lot of abuse. This usually means I either eat nothing or risk getting cross contaminated from eating foods that others have deposited toast crumbs in.

WHHHHAAAAAYYYY I want some support. it is NOT all in my head!

Joss


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Joss I think of lot of us have families like yours. Mine was very skeptical at first. I ignored them because I had no choice. What made a believer out of them, in particular my DH was when I no longer needed to see a doctor at least 2 times a months, they no longer had to help me get to hospitals for testing half a state away, and our copays went from 17 thousand dollars a year to less than 500 dollars. Sometimes the only proof we can give is how well we do on the diet. It made enough of a believer out of my family to get them to each get tested, they were all positive, after about 6 months except DH who waited for a couple of years to test since he didn't think he was symptomatic. Turned out he really was, he just wasn't half dead and he thought all the little things like the brain fog and tiredness and skin issues were just part of aging, they weren't.

Hopefully after you have been gluten-free for a few months they will be more supportive, if not you always have us here. :)

Joss Rookie

Well I am so much better. I haven't been admitted to hospital with asthma since 1986. Still they are not believers.

I am not going to pursue this anymore and I am not eating any food just to please others either.

Joss

loco-ladi Contributor

Basically what this boils down to is that your old enough to drive and drink and do pretty much whatever you want, you also appear so far to be a relatively intelligent person (even with my typo's people say that about me so take that at what its worth, lol about .00000002 cents!)

Its your body and your life, your family has no say in what you do with it and indeed it is yours to do with as you please until "the end" at which point my guess is you pretty much wont care ;)

So, they complain about your eating gluten free tell them to go to hades! (see I used my nice words there ;) but feel free to use any colorful 4 letter words you want)

As for the flack they may or may not give you, look at them and ask when they became the parent and you the child?

I am having 5 family members as houseguests the beginning of next month, they all know of my eating issues and if they were not prepared to deal with it, they should not have bought the airplane tickets! Thats because its my house my rules (gosh isn't that what my mother said to me all those years ago? :P ) OMG I am turning into my mother!!! :o

OK, getting off my pedestal now and turning it over to whoever is next in line.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,791
    • Most Online (within 30 mins)
      7,748

    PamelaMayot
    Newest Member
    PamelaMayot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
×
×
  • Create New...