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

fed up italian


Sicilygirl

Recommended Posts

Sicilygirl Newbie

I am looking for words of encouragement because I have just had enough with this celiac diagnosis. I recently got diagnosed in October this year and its been hell let me tell you. Fist of all my doctor did not want to do the test saying that I was not Celiac because I did not have blood in my stool. Really??? I thankfully insisted that he do the blood work test just to make sure., since I was sick while in italy after eating both pasta and pizza and I knew something was wrong. I exhibited all the signs of gluten sensitivity, bloating and bad stomach pain which I never had ever after eating gluten.  After a week of waiting patiently for the test result it showed positive. I was both happy and floored at the same time. It has been an emotional roller coaster. Having to now work hard  to read labels constantly making sure they don't add gluten EVERYWHERE!! buying some comfort expensive gluten free foods to somehow make me feel like I am a normal person again. Hiring a dietician to put me on a diet to get my nutrients needed and to fix my villi that is destroyed. I feel sad, angry, depressed and why me?? is it an italian thing? I do not know. Anyways any feedback would be helpful. I am still extremely tired and have bowel symptoms and brain fog when do these go away?


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ellieb13's topic in Dermatitis Herpetiformis
      1

      Eczema or dermatitis herpetiformis

    2. - ellieb13 posted a topic in Dermatitis Herpetiformis
      1

      Eczema or dermatitis herpetiformis

    3. - knitty kitty replied to Barcino's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Antibodies went up

    4. - cristiana replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation

    5. - sh00148 replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,412
    • Most Online (within 30 mins)
      7,748

    ellieb13
    Newest Member
    ellieb13
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
    • knitty kitty
      @Barcino, Yes, do try cutting out dairy.  About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments.  Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy, Lactose.   Also, cut out processed gluten free foods.  Many gluten free processed foods use corn.  Some people with celiac disease react to corn the same as to the protein gluten because of similar-to-gluten protein segments of maize, the protein in corn.   Processed foods containing corn may also utilize microbial transglutinaminase to bind corn proteins together to improve texture.  Microbial transglutaminase is also used in dairy products like yogurt and ice cream to bind dairy protein casein together to improve texture.  Microbial transglutinaminase is not required to be listed as an ingredient because it is an enzyme considered to be part of the manufacturing process.  The increasing usage over the past couple of decades of microbial transglutaminase to cross link gluten proteins together in wheat containing products is suspected to be a trigger of Celiac genes, hence the increased numbers of people being diagnosed with celiac disease recently. Do consider supplementing with Benfotiamine, a form of Thiamin Vitamin B One, that has been shown in scientific studies to promote intestinal healing.  It also helps acne along with Niacin Vitamin B 3.  Vitamin D helps lower inflammation, and Vitamin C helps rebuild and repair damage.    I've had great improvement following the Autoimmune Protocol diet.  The AIP diet has been scientifically shown to improve intestinal health, too.  Developed by Dr. Sarah Ballantyne, a Celiac for her Celiac children.  It really does work quickly to reduce inflammation.  Although terribly strict,  improvement happens within a few weeks.   Hope this helps.  Keep us posted on your progress!
    • cristiana
      So glad @sh00148 that you now have a coeliac diagnosis for your daughter.   We really appreciate your update.  If we can help any further, do not hesitate to get in touch.
    • sh00148
      Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free. Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier. It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better.    Thanks all. 
×
×
  • Create New...