Why Can't People Believe Me?

[EquestrainGirl]

I've self diagnosed myself with gluten intolerance. Since January 2012 I've been mostly gluten free, and I feel so much better. My family doesn't really believe me..

In January I was talking with an adult that I really trust and told her about my severe abdominal pain, bloating, cramping, diarrhea and constipation (alternating) and some other things. Towards the end of our conversation she said that I might be gluten intolerant, that she was gluten intolerant and had similar symptoms. So I decided to try going gluten free and see how I felt. I felt much better, but also kept having symptoms (which when I would talk with her again would find out that gluten was in SO many things that you wouldn't really expect it to be in).

My family on the other hand has not been supportive. I'm a teen. In my family we normally don't talk about pain or anything, you just keep going and don't complain. So my mom was like, "well you've never said anything before!" and my dad says "well you don't seem any happier or less happier now that you are eating gluten free". Firstly, I NEVER complained to my family when I ate something and the pain was intolerable a few hours later, I would go off to be alone so that I could curl up into a ball and try and make the pain stop. And for Easter this year, I ate food at the gathering (which I was told was gluten free) but later when I went home to take care of my horse I couldn't clean her stall, instead I laid in a ball in the corner of her stall and she stood over me, protecting me. When I went back to my cousin's later, they said they had put a little flour in the food, but didn't think it would be a big deal. Yeah, well I sure noticed!

Anyhow. Now the thing is that my parents still don't really believe me. Its terrible because I'm not making up my symptoms, and I feel better when I haven't eaten gluten for a while. When people give me food to eat and say its gluten free, just to test if I can tell or not, I definitely can! And this is why I don't eat food from my brothers anymore, they purposely put gluten into EVERYTHING. I don't want to go for the testing. I'm scared of what my family will say if the tests do come back negative, if they will force me to eat gluten again or not. And for the tests I need to eat gluten, and I really don't want to go through that again, because its TERRIBLE!

What should I do? I'm sure some other people out there have gone through something similar. What did you do?

[Bubba's Mom]

It's really a shame you didn't get tested before going gluten-free. Once you're off gluten it's hard for someone with an intolerance to go back on for testing, whether it's full blown Celiac or not?

If you go to a Dr. he/she may want you back on for testing? A gene test will only tell you if you have the common genes associated with Celiac, but many people have these genes and are symptom free until the disease is "switched on"...and there are some less common genes that Dr.s don't pay much attention to. It won't be conclusive.

It looks like your family is not going to take this seriosly until you have a DX? It's up to you to decide about testing, but one thing is for sure..you're going to have to be hyper vigilant about what you eat and where it came from if you don't get tested.

If it were me..I'd want to be tested. If it's not gluten that bothers you..something does. It would be good to know what it is? It might not be gluten?

You could always go gluten-free after testing if you want to no matter what they say.

If you DO have Celiac, and want to go to college there are special laws put in place to protect your rights. You'd need a DX for that.

[EquestrainGirl]

Ok... I know that Celiac's Disease runs in the family. Two of my second cousins are have Celiac's Disease, and my grandpa probably had it too (he's been dead for almost 30 years already though). He couldn't eat wheat products, so my grandma had to make him special foods always, and then he died of cancer before they ever heard of Celiac's Disease. My cousins who have it are his brother's grandkids (if that makes sense).

[mommida]

Well I have siblings that didn't believe me at first either. My daughter was in diapers, so they did see first hand what a gluten blowout is.

Now they believe some people just can't handle gluten no matter what may or may not be in a patient file at the doctor's office.

They still don't believe enough to get tested themselves. My brother is having what first appeared to be heart problems and is now being reffered to a gastro.

[dani nero]

Sorry to hear you're lacking support from your family. A lot of us can associate with you and share your fears and frustrations about going back on gluten. I'm still waiting to go visit the doc who most probably will make me go on gluten. I'm sad to say that your adult friend should not have recommended you to go off gluten without visiting the doc first, but what's done is done. Is your friend self-diagnosed or do they have a doctor? If they have a doctor then you might consider taking an appointment there.

You have to be more vocal with your family to make them understand, because "getting it" is the hardest part for them. It's hard to understand Celiac because it isn't like a cold or chicken-pocks (some people on the board with rashes might find that ironic) and because gluten is embedded into everything.. literally, and most people eat it with no problems. To them this is very strange.

You have to start looking after yourself. Wash your hands or anything else (dishes and cutlery) with your own sponge before putting anything in your mouth. You also need to read this info: https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

[EquestrainGirl]

My friend told me to try going gluten free because we knew my parents wouldn't believe me or take me to the doctor. I wanted a fix then for my pain and other symptoms (even though I had been living with it for quite a while). And here getting a regular doc's appointment takes anywhere from 4-8 weeks, and then how ever long it takes to get referred to a specialist... I also wasn't really willing to drag it all out for another 3 months, although I guess in a way it would have been good.

[Bubba's Mom]

My friend told me to try going gluten free because we knew my parents wouldn't believe me or take me to the doctor. I wanted a fix then for my pain and other symptoms (even though I had been living with it for quite a while). And here getting a regular doc's appointment takes anywhere from 4-8 weeks, and then how ever long it takes to get referred to a specialist... I also wasn't really willing to drag it all out for another 3 months, although I guess in a way it would have been good.

You may have to be careful when around the straw that's used in horse's stalls too? It has the potential to have a good dose of gluten.

[JNBunnie1]

My friend told me to try going gluten free because we knew my parents wouldn't believe me or take me to the doctor. I wanted a fix then for my pain and other symptoms (even though I had been living with it for quite a while). And here getting a regular doc's appointment takes anywhere from 4-8 weeks, and then how ever long it takes to get referred to a specialist... I also wasn't really willing to drag it all out for another 3 months, although I guess in a way it would have been good.

I'm sorry that your family is making this so hard for you. I think you may be able to at least get them to recognize that you have a problem. Next time someone glutens you, don't go hide. Stay in the kitchen, living room, wherever the poeple are. Let the reaction come, let them see they are hurting you.

Also, at some point, you are going to have to be in charge of your food. Noone can force food into your mouth. If it's not safe, don't eat it. I know that's a big job to take on, but you already know you feel better without gluten. You already know you can't trust your family. So you can learn how to keep yourself safe, please keep coming back here and asking questions! Let us know how we can help you!

[squirmingitch]

Can you get your 2 second cousins with celiac disease to sit down with you & your parents & have a talk about how celiac disease is genetic & how much damage it can do if you don't follow a gluten-free diet like giving you cancer or insulin dependent diabetes etc, etc...

It sounds like your parents are in denial & your brothers are just being pesky brothers who won't take you seriously as long as your parents don't take you seriously.

[dani nero]

Can you get your 2 second cousins with celiac disease to sit down with you & your parents & have a talk about how celiac disease is genetic & how much damage it can do if you don't follow a gluten-free diet like giving you cancer or insulin dependent diabetes etc, etc...

That's a great idea!

[Ninja]

You could maybe write your parents a letter? I find it is much easier to explain things through writing. You could explain that you felt like you couldn't talk about your pain to them beforehand because nobody else in your family talks about theirs. Sometimes parents react strangely when they find out their child is in pain and they haven't been aware of it. Being a teen and living at home, I realize that it is extremely important to have your parents support. Maybe they just need to see what you go through?

Have you talked to your cousins about gluten? I think it's a really good idea to have them speak to your parents, too... as long as you've spoken to them (your cousins) first.

Keep us posted!

~Laura

[pricklypear1971]

I suggest reading around the University of Chicago Celiac Center website. They have lots if info that may help you talk with your parents and learn about Celiac Disease.

They also have great little factsheets that are printable for you, your parents, and your doctor. Open Original Shared Link

[nora-n]

About horses, at least here they only eat oats, which are usually quite gluten free. The hey and straw here is probably oats. At least I have not reacted to the horses and the stable. I am at the stables occasionally and would notice a difference, since I react do wheat dust and barley dust too.

[EquestrainGirl]

I suggest reading around the University of Chicago Celiac Center website. They have lots if info that may help you talk with your parents and learn about Celiac Disease.

They also have great little factsheets that are printable for you, your parents, and your doctor. Open Original Shared Link

Thanks, that will definitely help out I hope! I'm hoping to sit down and talk with my parents soon and really make them listen to me. But I also in a way dread it cause my dad is REALLY convinced that it is just in my head... arg.

[EquestrainGirl]

About horses, at least here they only eat oats, which are usually quite gluten free. The hey and straw here is probably oats. At least I have not reacted to the horses and the stable. I am at the stables occasionally and would notice a difference, since I react do wheat dust and barley dust too.

Yeah we grow and harvest our own crops here so I'm sure that it is just all from oats. My horse is allergic to wheat and barely straw (she gets a rash and coughs a lot) so that is a bonus for me too because I for sure will not give her bedding that will cause her problems. And her hay is contains no wheat or barely either. My horse is safe for me, thankfully!

[NorthernElf]

My hubby got it because he saw it. I got sick & miserable on gluten. My doctor was a twit - it all started with a wicked virus that made me unable to eat for a week & I lost 5 pounds - I was very sick. It took me a year to figure out how to eat without being sick. I had a blood test (negative) and then was scheduled for a endoscope 4 months later. I stopped eating gluten before the blood test so by the time I had the endoscope there was nothing to see. I never got a celiac diagnosis BUT I get very sick so I am very careful.

I live a few hours away from my extended family, including my folks, and they didn't really get it for awhile (it's been almost 10 years). They raised me & I didn't have this so why now (ha - I'd like to know this too!)? It took time. It also took them seeing me stick to it religiously to see that I truly didn't eat gluten. It also took them seeing me get sick a couple of times eating out when travelling to see I wasn't making this up. Oddly enough, my inlaws got it faster. My MIL bends over backwards, has a separate toaster & cutting board & gluten-free stuff in her freezer. At my folks' place, I bring my own food. Seriously - we travel the 5 hours down there & my mom has cold cuts & buns for everyone...I have to bring my own food.

Bottom line - you are in charge of your health, you cannot rely on anyone else to look after it for you. You suffer the consequences. Hopefully they get it as time goes by,...sucks I know but sometimes people need time to come around. Good luck!