Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Should Parents Of Celiac Children Be Diagnosed?
0

2 posts in this topic

I just read a post from parents of a celiac child asking whether they should get themselves diagnosed. I want to say emphatically yes because it tends to be a genetic condition and also because in many cases, the symptoms will not show up until you are well past 60 years.

As the youngest of six siblings, I can tell you you do not want to be discovering in your 70's you should have avoided gluten earlier. All Six of us have had pretty rough results from the secondary effects of the condition, and it has been hard for me to watch the tragic late-in-life effects on my siblings. Most of the effects are evidently the effects of malabsorption of essential nutrients.

I strongly advise at-risk persons to get their facts together while they are young enough to act on them.

And to discover all the great recipes for a nutrient-rich alternate -carbohydrate lifetime of good meals. I went gluten-free in my early 60's and 15 years later unlike my remaining siblings I'm doing well (and eating well). I recommend if you are symptom free to do the Enterolab type test to get the benefit of the range of indicators. Or just go gluten free anyway.

1

Share this post


Link to post
Share on other sites


Ads by Google:

I just read a post from parents of a celiac child asking whether they should get themselves diagnosed. I want to say emphatically yes because it tends to be a genetic condition and also because in many cases, the symptoms will not show up until you are well past 60 years.

As the youngest of six siblings, I can tell you you do not want to be discovering in your 70's you should have avoided gluten earlier. All Six of us have had pretty rough results from the secondary effects of the condition, and it has been hard for me to watch the tragic late-in-life effects on my siblings. Most of the effects are evidently the effects of malabsorption of essential nutrients.

I strongly advise at-risk persons to get their facts together while they are young enough to act on them.

And to discover all the great recipes for a nutrient-rich alternate -carbohydrate lifetime of good meals. I went gluten-free in my early 60's and 15 years later unlike my remaining siblings I'm doing well (and eating well). I recommend if you are symptom free to do the Enterolab type test to get the benefit of the range of indicators. Or just go gluten free anyway.

I'm not sure. Were you trying to reply to a specific post or thread? Rather than start a new topic?

Anyway, I'll respond to 2 parts of this.

http://www.cureceliacdisease.org/archives/faq/what-is-the-prevalence-for-others-in-my-family-to-have-celiac-disease-since-ive-been-diagnosed-with-it

"What is the prevalence for others in my family to have celiac disease since I’ve been diagnosed with it?

Celiac disease is an inherited autoimmune disease. The prevalence of celiac disease in 1st-degree relatives (children, parents, siblings) has been reported by numerous studies around the world to be significantly higher than in the general population, hence the need to screen every 1st-degree relative. The actual prevalence varies among the published studies, between 4-16%. Our own experience when testing for celiac disease in 1st-degree relatives is a prevalence around 5%, or 1:20. In 2nd-degree relatives (aunts, grandparents, uncles) a prevalence around 2.6%, or 1:39."

And the Enterolabs part:

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.

We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough)."

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,535
  • Topics

  • Posts

    • I have 2 insurance policies, one with my husband's company and one through mine. I also stretch out the more major work into the next year, so I can make the most use of my benefits. So, a dental implant for me takes about a year for me to complete.  I have the post put in at the end of one year and the tooth made about 6 months later. Honestly, the insurance company probably hates me because I max out my benefits every year. You do what ya gotta do!  I still have to pay for some of the work out of pocket but about 75% gets covered. If you pay cash for procedures then they usually charge a lower price. Haggle with the dentist over price. They like getting cash.
    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,640
    • Most Online
      3,093

    Newest Member
    Kasia2016
    Joined