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Parents
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I am wondering about people still living with their parents and who need to be gluten-free (and in my case also dairy free).

Mom and dad seem to think that little amounts of things (flour in pudding, crackers in meatloaf) are fine. I cannot seem to convince them otherwise. My mom even said she lets stuff like this go in one ear and out the other. I've told her about this webpage and she seems only mildy interested in looking at it.

The other night at supper, dad was re-heating a steak from the night before when they ate out. He kindly offered me some and when I asked what it ws cooked in, he got defensive and rolled his eyes at me. He doesn't seem to think that it matters, and didn't believe me when I said that many places cook their steaks in butter (which usually has milk).

They seem more inclined to believe the dairy allergy (though mom's convinced that it was caused by the Paxil CR and that in a few months I'll be just fine again), since they've been there for those attacks (and usually in the ER with me afterwards before we knew what was wrong).

Any idea how to change their attitudes? I know it sucks that I have some limits now, but it's a good thing for me, and it explains a lot of the stomach troubles I've had over the years.

*sighs* :(

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you should all go to a dietation and have the dietition talk to them about it and have them tell your parents that this diet is very important for you to follow or have all you go to the doctor who dx you because that doctor probably knows what you were like when you were not following the diet

how old are you? if you are a teen you should look at the teens message board i am 13 and if you need any help ask my e-mail is in my signature

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Hi Aightball: :D

I agree with flagbabyds, I think going to a dietitian is a good idea or have the doctor who diagnosed you with this speak to your parents about it.

Also try printing out some information on Celiac and giving it to them. They need to understand the seriousness of this disease and the problems you may have if you do not stick to a strict gluten-free diet!

I applaud you for taking control of your health and wanting your parents to become more knowledgeable, hang in there it will get easier. :D

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:D I never thought about either of those options and I will look into them!! I did bring home a packet from the dietation, but mom tucked it away and never looked at it. I will be sure to print off some information for them and might just have to sit there while she reads it!!!!

Thank you fo the suggestions! I refuse to eat things that are bad for me, no matter how many times mom and dad roll their eyes or get upset.

Stacie: my sister spells her name the same way, lol :). We thought she was the only one!

-Kel

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Kel:

You may have to sit with her while she reads it, but if it works that's all that matters. I don't blame you for not wanting to eat anything that will hurt you and that is an AWESOME attitude to have.

Don't take it personal when your mom and dad roll their eyes at you, they just doesn't understand. You just keep pressing on and looking out for yourself and they will come around soon!!!

Yeah I don't see many people who spell the name that way either, we must just be unique!!!! :P

Have a great day

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I was just wondering, are you officailly a Celiac? I can't imagine parents being this cavalier towards a child who has a life-threatening disease. That is downright abusive! I'm sure they love you very much, but if you've been diagnosed with celiac disease they need to look into the facts of this disease and see what can happen if you ingest ANY gluten at all-even small amounts. Their disinterest could cost you your life.

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gillian502> I think they are coming around a little bit. Dad actually checked a can of beans last night before he made chili, so that's a good first step. I am still going to make mom and dad read things, though, so they get my point.

I forget who asked how old I was, but I forgot to answer you :(. I am 25, and due to financial problems had to move back home to mom and dads for a while. Am hoping to move out in the summer, esp. so I can keep a gluten free home!

I am hoping they will come around to this. One thing I've noticed in my parents over the years is that unless it's really serious (diabetes, or something like it), or it happens to them *or* they were there and heard the doctor say it, it's almost like it's not real to them. I know that as a child I was a hypochondriac, but no more!!!

My diagnosis as I understand it is: allergic to all dairy prodcuts (which they are taking seriously, as I was allergic as a child and they've seen those reactions), and then intolerant of gluten and wheat. I assume that means Celiac, esp. since I was referred to this shite by the allergy doc :). I don't know how/if I should be tested for celiac disease, though.

-Kel

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Hey kel-

I am 23 and have also moved back in with mom and dad since I got sick. Lucky for me, the people who are really close to me, mom, dad, boyfriend and sister saw exactly how bad it got (including *carrying* me to the ER), so they are all behind me.

Family is great, but still it can be hard to lose your independence. I am not sure why yours would be so resistant, except for maybe the "ostrich effect." Maybe they think if they deny it, it won't be true. to many people, this diet seems like a fate worse than death, and they don't want their little girl to suffer, and make sacrifices.

I hope they come around soon, and are supportive and helpful to you. And until they are, we are here.

Libby

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that is good that they are coming around, i was dx when i was 20 mnts so i don't remember it but from my moms book about it and i have heard that i was in the hospital for 3 mnts and the doctors gave me 2 more weeks to live because i was starving to death. my parents remolded our house just after i was dx so i have my own counter and fridge and everything that is close to me is gluten-free i hope you feel beter

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Kel,

Oh, I didn't realize you're an adult! Thought you were a teen, but your situation and other's sounds a lot like mine...I lived alone in NYC for 10 years, went to college there, totally independant, then Celiac struck! Back home I was with my Mom! I wasn't able to live alone any longer due to the effects of the illness. My mother does most of the cooking for the household and it took a while to make her understand that she must question EVERYTHING I ate, including every spice, watching every bread crumb, the whole bit. She still doesn't get how serious cross-contamination is, and I still deal with unclean counters and unclean refridgerator a lot that I try to wipe down from time to time.

You were also asking if your gluten intolerance makes you an official Celiac. My understanding is, a person is not really a Celiac unless they are blood and biopsy tested for the disease, however, I'm sure there are plenty of celiac disease patients out there who have it but are misdiagnosed. I guess what you are is called "gluten intolerant" which is basically the same thing.

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I wonder if it would be helpful for those whose family members are resistant to acknowledging the seriousness and requirements of the disease to draft a letter for your own doctor to sign that gives a concise description of the illness. You can explain to your doctor that you need it for restaurants and other situations to convey the seriousness of the problem and what you can and cannot eat. Include references to cross-contamination and possible long term outcomes (intestinal cancer should be dramatic enough for most people). Just a thought.

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I think things are coming around, with mom at least. She did finally look at this site and she seems more willing to understand a bit of what I am going through. I explained that I was unhappy when dad rolled his eyes at me when I asked about the steak. She said that she knows, so I hope that's a good sign of things to come.

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    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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