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

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
      131,983
    • Most Online (within 30 mins)
      7,748

    CRae
    Newest Member
    CRae
    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

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.