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

How Many Parents Found Out After Their Children..
0

17 posts in this topic

I am just wondering how many mom's or dad's found out after their kids were diagnosed? I have had digestive issues for years. Anemia on and off etc. Anyway, my blood work came back borderline, but I had been gluten-free for a month when I got tested, so I know I have it. I guess he is wanting to do a biopsy, but I don't know if I want to go through that. I would have to start eating gluten again and it makes me too sick.

Of course no one can understand how I could be walking still and be half way normal and still have celiac when my son's symptoms were different then mine. I haven't felt so good though in years. I am SO happy to know what is wrong with me. I am having my oldest son tested too, because he is the shortest kid his age and he had GI symptoms of celiac disease for awhile.

I don't know what to do to make some family and friends understand, but I guess some will choose to never understand!!!

Monica

0

Share this post


Link to post
Share on other sites


Ads by Google:

In my case, my grandmother found out after I got diagnosed. She got tested because I was diagnosed. She knew celiac was genetic. Now to get others in the family to also get tested... that could be a challenge :blink:

0

Share this post


Link to post
Share on other sites

Same with us here. Since I know I have celiac disease I tried to get my mom into testing. But it's easier to get a donkey to follow you :lol: . With her it goes like into the left ear and out to the right :P . Well, she will visit me from September 1st - 28th. And as long as she is at my house she will only get glutenfree. Because I will throw everything with gluten out until she arrives. So let's see how she feels after one month. And I try to convince my husband not to buy any toast bread for himself or anything like that. So she will have to eat what we eat. The only chance for her to eat something else, is when we are in Memphis and New York. Other than that she will be glutenfree. Haha!

0

Share this post


Link to post
Share on other sites

My Mom and my Brother both found out they have Celiac Disease after I was diagnosed.

0

Share this post


Link to post
Share on other sites

I was just diagnosed, so my mom asked her doc about it this week. My mom has diabetes type 1, but it was adult onset because everytime she got pregnant or sick, her immune system would hurt her pancreas, giving her less and less insulin. She has no digestive systems. Unfortunately, the doc lumped the test in with the next round of blood tests that my mom will have, and that isn't until September! I am also trying to get my sister tested. She has digestive systems and has lost some weight recently with no explanation.

0

Share this post


Link to post
Share on other sites




My mother got the blood tests (at my insistence) during her last physical but never got the results; the doc's office didn't call her and she never followed up. She's always regarded celiac as "my thing", something that will never affect her. Here we are a few months later and she's starting to have persistent diarrhea and a rash on both elbows. Although she's beginning to consider the possibility that gluten may be causing her problems, she's pretty adament that cashews are the source of the GI trouble. She's been hemming and hawing about calling to get the results of the blood test. I finally asked her point blank if she just didn't want to know.

My concern is that her symptoms aren't severe enough to compel her to make the leap to gluten-free lifestyle if her test is in fact positive. She said "I'm not going to do all that stuff you do" (with respect to food), and "I can live with the diarrhea". I guess all I can say to her is "read up on the risks of eating gluten if you have celiac, so when you decide to go to Buiscuitville with your friends at least it's an informed decision."

I wanted to demonstrate to her how easy it is in this town to get gluten-free food, so I took her with me to Whole Foods to show her the wonderful gluten free bakery rack filled with stuff from that bakehouse in Morrisville. I told her all about the different breads and scones and cookies and pies. We got there and the damn thing was gone and in its place were charcoal briquettes and grilling tongs. wtf :angry:, I can get tongs at Wal-Mart.

0

Share this post


Link to post
Share on other sites
I am just wondering how many mom's or dad's found out after their kids were diagnosed? I have had digestive issues for years. Anemia on and off etc. Anyway, my blood work came back borderline, but I had been gluten-free for a month when I got tested, so I know I have it. I guess he is wanting to do a biopsy, but I don't know if I want to go through that. I would have to start eating gluten again and it makes me too sick.

Of course no one can understand how I could be walking still and be half way normal and still have celiac when my son's symptoms were different then mine. I haven't felt so good though in years. I am SO happy to know what is wrong with me. I am having my oldest son tested too, because he is the shortest kid his age and he had GI symptoms of celiac disease for awhile.

I don't know what to do to make some family and friends understand, but I guess some will choose to never understand!!!

Monica

Sounds just like me! :D Cept my son has not yet turned two and celiac disease only sets in after you start them on wheat... around 6-9 months in most cases so I cant say "years" with him.

0

Share this post


Link to post
Share on other sites

almost 2 years after my daughter and I were dx, my dad's dr's FINALLY told him his symptoms "could be" celiac and he goes "sheesh, my daughter and grandaughter both have this"... BAMMO!!!! He feels much better gluten free

0

Share this post


Link to post
Share on other sites
The only chance for her to eat something else, is when we are in Memphis and New York. Other than that she will be glutenfree. Haha!
:lol: that is funny
0

Share this post


Link to post
Share on other sites

Vincent,

SOrry if I confused you. My son that got diagnosed it actually only 15 months old. My other son is 6 and his main symptom is short stature, but he had GI symptoms for a year and then they seemed to go away. SO I am having him tested too.

Monica

0

Share this post


Link to post
Share on other sites

Yeah, it is funny how some people would rather be miserable then find out something is wrong with them. My mom has SO many symptoms and I am convinced she has it too, but she is stubborn as a mule! She told me if my tests came back positive then she would get tested and now that they have, well we will see if she goes. I feel so much better, I would rather never eat out again! Who wants to feel cruddy your whole life, I certainly don't! I guess it is their choice. I keep telling my mom to try the diet and she lasts a day and then cheats.

Monica

0

Share this post


Link to post
Share on other sites
wtf :angry:, I can get tongs at Wal-Mart.

:lol: tongs at WalMart. THIS is funny...

0

Share this post


Link to post
Share on other sites

None of my kids have been diagnosed, my dad has no gi problems whatsoever (and absolutely no sign of celiac! :D), but both of my sisters have manymanymany of the symptoms! Neither one will get tested because they do not have constant diarrhea or weight loss. I was just talking to my younger sister yesterday about it, she kept saying she has none of the symptoms, but then in the next breath she told me about her B12 shots, constant gut pain, neurological disorders, and so on. Grrr!!! :angry: I finally told her that I believe Mom died from untreated celiac, and that I would not quit nagging her to at least get the blood test done until she emails me the results! I love my sisters, and I only want what's best for them, including a life without gluten if they are celiacs! B)

0

Share this post


Link to post
Share on other sites

phakefur, I ran into the same thing at Whole Foods, the gluten-free bakehouse Rack was GONE!!! I pitched a fit until someone pointed out that they moved all the gluten-free bakehouse foods to a Freezer because they had too many people bringing it back because it had gone bad really quickly. Ummmmm no preservatives, yeah... gonna go bad quick... it's ok in the freezer though, it thaws out just fine, they freeze it before they ship it out anyway.

0

Share this post


Link to post
Share on other sites

When they did the blood test on my son, I started researching. Funny, I had a lot of those odd symptoms that could have been attributed (and were) to other problems (like arthritis, acid reflux, migraines...) hmmm. So, the whole household went gluten-free. It seems to make no difference for my older boy nor for my husband... but man did young one and I see some major differences!

I'm not even going to bother with the blood tests and such for me. I now KNOW what is going on in my innards. And while my son's blood tests came back "inconclusive", we are proceeding with the idea he probably has celiac disease or is at least gluten intolerant. In any case, we both feel much better.

0

Share this post


Link to post
Share on other sites
they moved all the gluten-free bakehouse foods to a Freezer because they had too many people bringing it back because it had gone bad really quickly.

Thanks Nisla. I forgot they had done that in the Raleigh store when I was looking for bread in Chapel Hill. I guess it's a company wide thing. Now I'll have to nuke my brownies in that filthy microwave when I stop in there for coffe, not to mention that it was a lot easier to scope out single celiac men when the g.f. rack was out in the open B)

0

Share this post


Link to post
Share on other sites

Jenn was diagnosed years after I was fully disabled with what we now know were long term complications from the celiac disease. When she was diagnosed, my doctors just shook their heads at a possiblity so simple that they had overlooked in me. Sure enough, one set of blood work and I was diagnosed as well. Now if I can just get some other very symptomatic family members to give in and get checked...

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
      103,887
    • Total Posts
      919,486
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle, The celiac testing process usually includes a blood test for gliaden antibodies first, and then an endoscopy to take biopsy samples of the small intestine to check for damage.  So while it's good to get the celiac panel done, don't go gluten-free until the whole testing process (including endoscopy) is completed. Vitamin deficits are a problem in celiac disease, so that issue does match up.  Anxiety and digestion problems are common too.  Celiac is tied to a few genes, so if your mom has it, you might have it also or might develop it at some point in life. Don't be too scared of it if it does turn out to be celiac disease.  The gluten-free diet can be a big change but the end result of it is you'll feel better.  You'll probably end up eating better more nutritious food than most people also. Celiac is a great disease in one way, because we know the trigger (gluten) and can treat ourselves with diet.  Most times doctors don't know the cause of autoimmune diseases and can't do anything but medicate the patient.  Our medicine is food.  Yum!  
    • Depression / anxiety issues
      You are welcome Chris.  The vitamin D council site linked below has info on how much vitamin D we need and how much sun is needed to get it, what foods contain it etc.  Around my neck of the woods I can only get UVB rays (needed to make Vitamin D in skin) from 10 am to 2 pm.  So a food source or vitamin pill is a good option,  Especially in winter when you probably won't get any V-D from sun exposure.  Foods sources are mackeral, salmon, tuna and a few plants like spinach and kale.  You can find a review of various V-D brands on the labdoor website.  Some pills are useless so it pays to verify you are taking a good one. http://www.vitamindcouncil.org/about-vitamin-d/ https://labdoor.com/rankings/vitamin-d  
    • Eeek confused! Positive biopsy, negative blood test???
      Sealy-yak - Can you confirm if they did the Full Celiac Panel? Some Celiac blood tests are more reliable than others.   
    • Eeek confused! Positive biopsy, negative blood test???
      the whole celiac/doctor issue is as frustrating as it is common, unfortunately   my gp, who knows full well that i have celiac, tried to give me this new 'miracle drug' for ibs-d when i told him i was still having indigestion/inflammation for seemingly no reason.  "it's expensive, but i have a coupon for the first month"  O BOY LUCKY ME!  i told him, ok, that i would try it.  (i think i have an idea of what my problem is and i originally asked for something different to try to see if it would work.  he didn't even know what it was)  i'm not gonna try it.  it's a narcotic, it has side effects i don't need or are the same as my symptoms.  i'm gonna switch doctors.  and switch doctors again and again until i find one that KNOWS MORE ABOUT THIS THAN ME.  on top of that, they computerized all their records, which i have been going there for 20 years, ASKING WHAT I'M ALLERGIC TO!  i said:   umm, don't you have that in my MEDICAL RECORDS??!!  well, we have your paper records.  i said, i'm HERE.  don't ya think ya shoulda pulled my file out??  i mean, y'all knew i was coming.  you know, the appointment thing....... LOLZ yeah, i've been gluten free for 6 years, and this clown tells me 'you know, you can't drink beer'  i said yes i can.  he says no, you can't.  i said why not?  because of the alcohol, haha?  no, because it has hops in it and if you're celiac, you can't have hops.  i said it's BARLEY.  O MY GOSH!!!!!!!!!!!!  i said, you're the doctor.  rolled my eyes and left. welcome to the board  sorry for all the yelling, lolz.  
    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Robyn08
    Joined