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

Glad To Have Found This Site


cindasana

Recommended Posts

cindasana Newbie

Hello,

I'm really happy to have found this forum! A few days ago, my Mom posted a link to an article on the Huffington Post, written by Mark Hyman. It was about why modern wheat is not the panacea it was made out to be, but what caught my attention was a line in which he mentioned the type of gluten in modern wheat is more likely to cause Celiac, as well as a lot of systemic inflammation. Having someone in my family who's got celiac, this tweaked my interest enough to instigate a Google search, which became another, which became another. The decision I came to after finding all the information about celiac/gluten intolerance that I did, was that I will be going to the doctor to get tested, and recommended to several other family members that they do the same thing.

We're Irish by descent (with my Grandparents being of Irish birth), have one person in our family who's been diagnosed with celiac, and a number of us have symptoms that sound too much like either celiac or gluten intolerance to reasonably be dismissed. Gastro issues abound, and I find myself wondering if family members have been misdiagnosed...ulcerative colitis, crohn's disease, IBS, skin rashes/scaliness/eczema, asthma (adult onset), allergies (adult onset), hair loss (in females), depression, the list goes on.

It seems from what I've read that misdiagnosis tends, unfortunately, to be somewhat common. Is this so? Is it common for things such as UC and Crohn's disease to be diagnosed when it's really celiac? Can celiac actually *cause* these other conditions?

From what I've seen here, folks have been getting bloodwork done for anti-endomysium antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA) or anti-reticulin.. Would it be recommendable to go for testing for the genetic markers H.L.A. DQ2 and H.L.A. DQ8 first? I'm not sure whether the genetic testing is even covered here (I'm in Ontario, Canada) as I haven't had much exposure to civilian healthcare yet, so it could be that the bloodwork will be the only option available to me.

In the meantime, I'll keep on reading up on things here. :)

Thanks again!

Cindi


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



Celiac.com Sponsor (A8-M):



faithforlife Apprentice

We decided to test our whole family of seven (my husband me and kids) for the antibodies and the genetic markers. Our son was diagnosed celiac based on those two plus a very positive response to the diet. His endo just showed early signs- severe inflammation. We knew the whole house would be gluten-free so we wanted to test first and based on the outcome we could make a decision about who could eat gluten outside of the home. turns out only two out of 7 will eat any gluten. And turns out I ( mom) am very celiac and never knew it. Positive every test even my endo. I felt more energetic on diet. As far as my relatives all I can do is inform them. I recommend that they be tested but so far over a year later no one has shown much interest besides experimenting with a few gluten-free recipes usually for my sake. My mother however with the most symptoms tried the diet at length and felt better. But still won't proceed further.

Bubba's Mom Enthusiast

If you think this may be an issue for you, please do ask to be tested. Tell the Dr. you want the full Celiac panel, because some don't know what tests to order. You must continue to eat gluten until your tests are done.

The gene test can help tell if you carry the genes, but many who carry the genes don't have Celiac until it is triggered by something stressful in their life, either emotional or physical.

If you test negative for Celiac, you can still try the gluten-free diet and see if you feel better? Going without wheat won't hurt you.

The way they have messed around with the wheat genetics is scary. It's not even close to the original grain. Many people are sensitive to gluten in some way, even if it's not full blown Celiac disease without knowing it.

Gluten containing foods are a bit addictive? Most people don't realize it, BUT..if you tell someone they can never have that pizza, beer, or doughnut they're used to, they don't think they can live without it? Sounds like addiction to me!

Some people don't get tested even if they're suspicious because they don't want to know. I have family members that fall into this group and it makes no sense to me at all!

If they told me tomorrow that I could now eat any wheat product I wanted..I would limit my consumption anyway. It's not a healthy food with ani-fungal and a naturally occuring pesticide built right in.

cindasana Newbie

Thanks so much for your replies. :) Wow...how scary to think that a person could have such a serious illness and have it not show any symptoms at all. :o

2008-2010 was ridiculously stressful, with some illnesses thrown in there and exposure to who-knows-what while on deployment thrown in for good measure, so I suppose were there to be a trigger that would be it! :rolleyes:

Archived

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

  • 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. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results

    2. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    3. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    4. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      3

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    jscal6
    Newest Member
    jscal6
    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

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • 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.