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Family Wanting To Learn More

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I was diagnosed in January 2013, so it's a learning experience for me and my family. Hubby has been pretty good at helping me stay gluten-free, a few hiccups but we're getting there.

Went visiting my parents today. My mom is always asking me what I can't eat. My toddler niece offered me a cookie and my mom says, "No, Auntie can't eat that. She'll get sick." So my mom is getting it. She was even asking how she can make me my carrot cake for my birthday!

Then, my dad was asking me more about it....celiac disease, food, symptoms, how long must I have had it before getting tested, if I've gotten sick since "not eating wheat", what all has gluten in it, what gluten is... He gets up, goes into the kitchen and starts reading labels. "Son of a gun, it must be hard, There's so much you can't eat."

It feels good that they want to learn more about celiac disease and are doing their part and aren't just rolling their eyes because it can't be that bad, sort of thing. They know how ill I was before going gluten-free and are happy that I'm visiting more (was almost reclusive before dx because I felt so unwell and could hardly walk)

Both my parents have bad digestive problems, and I'm convinced my mom has undiagnosed celiac (quite a few symptoms), but refuses to get tested. My dad's thinking about it. Wonder if both my parents have celiac disease....double whammy for me ^_^


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the Univ of Chicago Celiac Center has an easy to read website. In the FAQ sections, you can put in a word like genetics and see that it's inherited, for example. The Living with Celiac part is easy to read too. You might give them the link and they can look when they want.


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Another good resource for you (and you parents) to read is the book

Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

I highly recommend it. The articles are written by 50 international celiac specialists, has short chapters, covers everything about the disease, how it is Dxed, what's involved in the diet, nutritional advice, how to avoid CC (cross contamination) and so many other topics.

And chapter 10 discusses "Who should be tested". :)

Specialists recommend all first degree relatives of a celiac be tested. (And that means your Mom and Dad).

Best wishes, hon.


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I hope your parents do get it.  Mine never did and never will.  In our case it is not celiac but food intolerances.  My mom has them herself but still eats what she shouldn't and then expects sympathy from us when she gets sick.  She is getting rather senile so that could be part of it.  I was glad when she didn't pitch a fit when I told her she was not allowed to have a margarita.  She was going to order one.  I grew up with her drinking those and then complaining because her throat was closing.  Knowing what I know now, I suspect an allergy there to something.  What?  I don't know.  Then she seemed to be able to drink them for a while.  But then the last time it got so bad I came close to dialing 911 and I just know how well that would have gone over.  Uh huh.  Luckily she just accepted it and didn't put up a fight.


My dad has stomach and sinus issues that I think would be helped by a change in diet but he refuses to get tested.  So I gave up.


But what they really don't get is the cross contamination thing.  They think that a little bit won't hurt.  So I tried this with them but it didn't work.  They both take prescriptions meds.  I asked me to show me their smallest pill.  They did.  So I said... " Okay.  Why don't you give one of those to Angela?"  My daughter.  They both recoiled in horror that I would even suggest it.  And I said...  "But why not?  It's such a small pill.  It couldn't hurt her.  Right?"  They didn't get the comparison there.


My mom also doesn't understand other things.  Like...  She was brought up to think that if you are sick to your stomach, you eat crackers.  Well my daughter was very sick and I had to leave her at their house to get a tire repaired.  My mom kept insisting that she eat crackers to settle her stomach.  I came back to find my daughter in tears and fuming.  She never could get my mom to see that those kind of crackers (wheat ones) would only make her sicker.


I tried buying my mom books about food allergies and intolerances.  She wouldn't read them.  Gave them away.  So I finally gave up.


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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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