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

Thank You!

chrissy

By chrissy
in Coping with Celiac Disease

Recommended Posts

chrissy Collaborator
chrissy
Posted

i was talking to my mom today about celiac and once again realized how grateful i am to be able to come on here and get info and help and support from all of you. i have a friend who has been diagnosed with celiac for 8 years---her daughter is a friend of my twins. because of her, i already knew a fair amount about celiac and her daughter helped explain celiac to the other kids at school. she doesn't go on any web sites, so some of her info is not quite up to date. one of my girls commented the other day that i seemed to know more about celiac than my friend who has had if for a long time. LOL!!! probably because i come on here so much!!! i also have to bake from scratch because we don't have alot of money and i have 3 celiac children to feed---she is able to buy mixes. sometimes i think that me knowing her, and her telling me so much about celiac was a blessing for me that was preparing me for what was ahead-----i hope i don't sound too corny!

christine

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

Celiac.com Sponsor (A8-M):


JKJ Newbie
JKJ
Posted
i was talking to my mom today about celiac and once again realized how grateful i am to be able to come on here and get info and help and support from all of you. i have a friend who has been diagnosed with celiac for 8 years---her daughter is a friend of my twins. because of her, i already knew a fair amount about celiac and her daughter helped explain celiac to the other kids at school. she doesn't go on any web sites, so some of her info is not quite up to date. one of my girls commented the other day that i seemed to know more about celiac than my friend who has had if for a long time. LOL!!! probably because i come on here so much!!! i also have to bake from scratch because we don't have alot of money and i have 3 celiac children to feed---she is able to buy mixes. sometimes i think that me knowing her, and her telling me so much about celiac was a blessing for me that was preparing me for what was ahead-----i hope i don't sound too corny!

christine

That sure doesn't sound corny to me! I feel so blessed that i had 2 different neighbors (one with Celiac ) who suggested my 6 week problem with explosive D might be C -- and in 4 days I was doing better! And have been ever since - so I definitely count that a fantastic blessing that I didn't have to suffer for years of much worse symptoms before realizing what my problem was. I still have not gone for testing - but continuously learn from this message board -- and the celiac site. I know I should be doctoring and getting tested but hesitate to go gluten challenge -or even start sharing with my Dr. -- (who I never in 2 years , have felt quite on the same wave length with :) (Maybe I need to change Dr's?) Anyway - corny or not - don't hesitate to share your feelings on this board!

nettiebeads Apprentice
nettiebeads
Posted
That sure doesn't sound corny to me! I feel so blessed that i had 2 different neighbors (one with Celiac ) who suggested my 6 week problem with explosive D might be C -- and in 4 days I was doing better! And have been ever since - so I definitely count that a fantastic blessing that I didn't have to suffer for years of much worse symptoms before realizing what my problem was. I still have not gone for testing - but continuously learn from this message board -- and the celiac site. I know I should be doctoring and getting tested but hesitate to go gluten challenge -or even start sharing with my Dr. -- (who I never in 2 years , have felt quite on the same wave length with :) (Maybe I need to change Dr's?) Anyway - corny or not - don't hesitate to share your feelings on this board!

I was very fortunate in that I also only had to suffer for about 6 weeks with D before I went to my gp. He had me cut out gluten, two weeks later on my follow-up, I didn't have anymore D; he pronounced me Celiac, go and eat gluten no more. End of story with him - 9 years ago. I've learned more about Celiac from this board than I had in the previous 9 years. I do mention my celiac to my current dr. He doesn't see the need for any more tests. The fact that the diet challenge was good enough for my previous gp was good enough for him. But he did run a series of blood work just to see how I was doing. Everything relatively normal, but my cholesteral is getting up there. That was it. And anytime you're not comfortable with a dr and you have the option to change, it is your perogative, and your health. Just my two cents.

Annette

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. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    2. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    3. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,140
    • Most Online (within 30 mins)
      7,748
    Staticgypsy
    Newest Member
    Staticgypsy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.