Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Do You Tell People You Don't Know Well They Should Be Tested?

4 posts in this topic

I think it's probably pretty common for newly diagnosed celiacs like me to see it everywhere but today I had the strangest experience. I was at a birthday party for a boy in my son's class who I don't know well (new school) but have met a couple times, have met his mom and his sister a couple times. I was looking at this boy and his sister and noticing how pale and thin they were and was surprised to see the boy, my son's age, is only a couple inches taller than him since most boys his age are half a foot taller (he's newly diagnosed too). And they have the dark circles under the eyes like my son and I have always had, and the boy tends to be a little grumpy and bossy, physical. I also was thinking the mom looks a lot like me, the good and the bad.

I was thinking about how it really isn't my place to say anything, just saying, "Your kids look sick." might not get the result I want! But then when I was leaving I mentioned to the mom that I wouldn't see her on Wednesday for the class Halloween party because my son has a biopsy because we are both recently diagnosed with celiac. She said, "I have celiac too.", I thought back to the birthday cake and asked, "But the kids aren't gluten free?". She said that her husband isn't a carrier, so her kids don't have it.

I'm just wondering if her kids have been properly screened. I know the quality of care in our area, with regard to celiac, isn't great. My son has been screened for many genetic conditions over the years, such as fragile X and others and I did testing in order to avoid having him do the blood work. But I've never read that this is the case with celiac.

I was thinking I'd ask her what tests she did for her kids and tell her that my doctor told me everyone should be tested in the family.

What do you think? Is it even possible to rule out one parent as a carrier and therefore all children?


Share this post

Link to post
Share on other sites

Ads by Google:

Both parents do not have to be carriers of celiac genes.

In fact, there are instances of celiac in people with neither of the common celiac genes.


Share this post

Link to post
Share on other sites

The next time you see her do let her know that because she is celiac her children should be screened also. Celiac is strongly genetic but it is not one of the diseases for which both parents have to have the gene. You may want to refer her here to the board so she can read and ask any questions she needs.

It is a good thing the subject came up at the get together.

And to answer the question at the topic head when I don't know people well but they have symptoms and know I am celiac I sometimes will say that I think everyone should be screened for it. If they want more info on symptoms etc I will give it to them and often refer people here to the board for information.


Share this post

Link to post
Share on other sites

Thanks, Ladies. I think that's a good idea, Ravenswood, to say that I think everyone should be screened for it. I do make a point of telling people that I didn't have certain symptoms prior to my diagnosis because I think people are still stuck on the idea of it being a purely GI thing. I will try to bring it up with her again after I see a specialist in San Diego. I think since we both have it it makes sense for me to ask if she's heard of this doctor and to let her know the "latest" practices such as testing my asymptomatic baby. I do think it's so funny that her son is so drawn to mine.

And, Ravenswood, just looking through your signature for the first time and I'm so sorry what you and your family have been through. It makes me really appreciate that my boys might get the treatment they need when they need it. I spend so much time grumbling about a health care system that missed my celiac for thirty years and my son's for three short years, but we are so lucky that we finally are in a moment where the care we need is out there and there are forums like this to help us out. I hope you and your sons continue healing.


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Person above me is correct. You need a skin biopsy, and it must be performed correctly. I never had a positive blood test but my biopsy came up positive for DH. Going gluten-free for a month usually won't  clear up DH. It commonly takes ~6 months, and this only on a very strict gluten-free diet. Any exposure to even small amounts of gluten (through cross-contamination, etc) can lead to flareups.     
    • Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it. The antibodies can stay under the skin for years. The derm is wrong.  Please describe how the rash acts & what it feels like.
    • Yes, there are other grains that have gluten but they don't have the TYPE of gluten that affects celiacs. Celaics can not have the gluten in wheat, barley, & rye. Corn has gluten but it is not the kind of gluten we react to. I actually use corn gluten in my garden as it prevents weed seeds from sprouting. LOL! Hey, it works great! Read these: Gluten is the name for the protein in grains. All grains contain protein that is theoretically gluten but people with celiac disease and most other gluten allergies only react to the form of gluten found in wheat (including spelt, kamut, triticale and all varieties of wheat), barley, and rye. From:   I've run across another gluten urban legend that needs to be dispelled: the idea that people with celiac disease and non-celiac gluten sensitivity actually react to gluten in all grains, not just wheat, barley, rye and sometimes oats. This just isn't true, despite what you might have heard or read. People who react to the gluten protein found in wheat, barley and rye don't automatically need to avoid rice, corn, millet, sorghum and other grains. From:   There are some unsavory sites out there in internet land that will tell you celiacs cross react to all grains. They generally have something to sell, a book, a video, some vitamins or other things. They use scare tactics to sell what they are selling. These claims simply are not true. If they were, then all the people on this site who have gotten well while not eating wheat, barley & rye but continuing to eat rice, quinoa, corn & so forth would not have gotten well; they would be dead by now & there would be no "old timers" on this site because they would have eventually died from eating grains other than wheat, barley & rye. Celiacs can develop sensitivities to other foods, even foods like cabbage or lettuce or potatoes or even rice or maybe only brown rice but that does not mean they are reacting b/c of gluten in those things. You may be doing great since eliminating rice from your diet and that is wonderful that you figured out that it affects you but that does not mean the rice contains the kind of protein that celiacs can not tolerate.  
    • So, I've had a skin condition for years which looks like DH but blood tests for it come back normal.  High doses of steroids or of immuno-suppressants work well to clear my skin, but as soon as they are reduced the inflammation returns.  I tried a gluten free diet for a month, during which my skin seemed to set on fire even more.  My dermatologist says if my problem was DH then I would have had a positive result from going gluten free for four weeks, although information on the internet suggests it takes at least 6 months.  Does anyone have some experience of something like this?  Do I believe my dermatologist or the internet???
    • Working a modifying a recipe to be both Vegan and Grain free. I am a bit low on funds right now and can not test it. Feed back is welcome and if you do it perhaps  get me a grams breakdown for duplication. 1 cup almond flour
      ½ cup unsweetened shredded coconut
      1 teaspoons cinnamon
      1 teaspoons apple pie spice
      1 teaspoon baking soda
      ½ teaspoon salt
      ¾ cup unsweetened applesauce
      ½ cup almond butter
      ½ cup Maple/Agave
      2 Tablespoons soft coconut oil
      2 Tablespoons Ground Flax Seed combined with 5 table spoons water whisked and set aside
      1 medium apple, diced small (about 1¼ cups)
      1 cup chopped pecans
      ¼ cup flax seeds

      Preheat oven to 350° F and grease a 9 x 13 inch baking pan.
      In a mixing bowl, whisk together the almond flour, coconut, cinnamon, baking soda, and salt.
      Add the applesauce, almond butter, honey, coconut oil, and ground flax mixture. Beat with a mixer until everything is incorporated.
      Stir in the diced apple, pecans, and flax seeds.
      Spread the batter in the prepared pan and bake for 25min
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member