No one believes me

[1398-Days]

I'm 17 years old, and over the past 5-6 years I've had a lot of stomach issues.. Not a ton, but definitely more than most people. Sometimes my stomach would get really upset for no reason and it would take me weeks to get back to normal. I never really thought much of it though and never told my parents or anything. I figured it was just a normal upset stomach because it was so inconsistent, it didn't happen after I ate certain things it was just random. Well, going back to December 2014 I suddenly couldn't eat gluten. Though  I didn't quite know that at the time.. I thought it was lactose that was making me sick. I'm lactose intolerant, but do have dairy occasionally with Lactaid pills. I've been using Lactaid for years and it was like it suddenly stopped working. I thought it was strange, but stopped eating dairy and seemed to be fine. But other the months it started to get worse. I would get sick when I was 110% sure that I had not had any lactose. Eventually it started happening almost every time I ate, and I started to do some research. I eventually came upon this site and started reading all about celiac and gluten sensitivity, etc., and thought maybe this was it! I had never even considered gluten before, but my symptoms seemed to fit.

So in August I stopped eating gluten and.. the symptoms stopped! I started to feel SO much better, no more upset stomach, fatigue, dizziness, headaches, brain fog, NOTHING! And I can eat dairy again (well, with the lactaid). My parents were less than thrilled when I told them that I wanted to stop eating gluten, but my dad has been really supportive and is very careful and does everything he can to avoid cross contamination (which I learned the hard way that I am very sensitive to). My mom and pretty much the rest of my family are another story though. My mom doesn't believe me at all. She thinks I'm just making it to make her life more difficult. Because this is so much fun for me!? Anyway, she constantly says that she doesn't think I have a problem with gluten and that I being overly dramatic with talking about cross contamination and stuff. She says there's no way you can get sick from that, and even if I did; "it's not that bad, right?". But even the smallest amount of gluten from cross contamination leaves me feeling awful for a week, and then another 2+ weeks before I feel like myself again. I haven't bothered to tell her though because she just says I'm being crazy. My dad recently got tested for celiac and the results came back negative, which my mom often talks about. Because my dad not having it means that it's impossible for me to? Even if I don't and this is just a gluten sensitivity, there's no doubt that gluten makes me sick and it's pretty discouraging to only have one person that legitimately believes me and will go out of his way to make sure I don't get sick. Not being able to eat 90% of what I used to eat, hungry all the time, and being that one person at restaurants that gets to sit and watch everyone else eat.. Not my idea of fun, and I would go eat a huge bowl of real pasta and a loaf of french bread right now if I could lol. It's just so frustrating that my own family doesn't believe me. How can I get them to see that this isn't just a game? I'm not purposely trying to make things difficult.. I'm sorry this is so long, I guess I'm venting... Coming to terms with the fact that I will probably never eat gluten again is hard enough without all of this. Any help would be appreciated.. 

[LookingforAnswers15]

Hi, it is hard when you do not have a complete support from your loved ones. I think a lot of celiacs have experienced this because it is hard for some people to really understand it plus it is easier for them to believe that it is all in our head rather than to accept that we have this. A family member of mine also would not even want to talk to me about this or accept that I had Celiac disease at first or any other problems later on. I guess I am partially to blame for that because I did not share all my problems and test results at first because I did not want this person to worry but I think it just worked against me. Also, I have been told that no one in our family had some of these issues ( which I highly doubt) so I could not either. Later, I found out that this person also did not believe me because there was one estranged family member who was always making up illnesses, so they never knew what was true. I made sure to remind this person that I never complained about health problems before in my life.  However, since I was also getting frustrated, I started sharing all my test results and this person is more accepting of my diagnoses but still does not understand how my conditions affect my body.

I would recommend using your dad as your ally and advocate. Try explaining it to your mom and if that does not work, talk to your dad to see if he can help her understand what you are going through. At least you have your dad on your side. I would recommend to get tested for celiac and food allergies. It does not hurt to get tested; you might just get answers for your troubles. However, you do have to consume gluten prior to testing. You are very young and if you do have celiac disease, having an official diagnosis can be very helpful when you start college (if you have not done so already). Some housing and residence life departments require official doctor's notes when students with some health issues request living in their apartments that have kitchens or request off-campus housing. Also, if they come positive, maybe your mom will be more accepting. If they do not, continue being gluten free since it helps you and just try to ignore what others think or say. Easier said than done but as you said , you already have to deal with not eating gluten. Good luck. 

I found this proverb. I think it is Irish and it says: The well fed person doesn’t understand the hungry one; meaning one can’t understand something they haven’t experienced. 

[Darren]

You're doing the right thing reaching out and asking advice. This forum is great for that. I'll keep it simple, tell your dad that you've contacted people who are celiac, and that in order to ensure your health isn't at risk ask him to take you to a doctor for celiac blood test. Don't ask your mom go to your dad on it and tell him how it upsets you that your mom isn't understanding.  I am celiac, my dad and mom are not. It is not passed on to all relatives. One of my two sisters has it and so does one cousin from my dads side of the family. So just because you dad doesn't have it doesn't mean that it is not is his or your genetics. Mine didn't activate until just recently and I'm 42. So whatever you can to get tested and take things from there. Perhaps your mom will start to listen when you have a doctors support or guidance. Best of luck to you and take care of yourself.

[Gemini]

Families can be the biggest obstacle with Celiac Disease.  I hear you because I have the same kind of family. But I am 56 years old and live away from them so its not as hard for me to deal with.

Let me say that I am totally impressed with you, as a 17 year old teen, that you have figured out your food issues and stick by your resolve to be healthy and well again. Stay with that mindset and you will go far in life.  I am not sure if you would be able to handle testing because it means eating gluten and being sick for at least 2 months. I would not do it but that's just me........I nearly died from this disease and will never let it pass my lips again. I was so sick that the diagnosis was easy by then.

Your mother is resisting because she knows deep down that she may have it also.  That genetic thing they live in denial with.  She will also have to think when cooking your food and it will be more work for her.  After being gluten-free for almost 11 years now, the food prep is something you get used to and actually enjoy, at times. I eat high quality food and never get sick any more so its a win/win!

As for college, things are changing on that front so it is not as important to have a diagnosis as it used to be for someone your age.  My niece never got a diagnosis and she has severe symptoms when glutened. She is in her last few years at college and they never questioned her lack of a diagnosis. She has free access to their gluten-free cafeteria stock and has never had to provide documentation for it. She goes to Ithaca College so it's not just your local community college that is doing this. Food allergies/intolerances are so common now that they have no choice but to accommodate or be sued.

Are there foods that you miss?  Maybe we can Help find replacements for you that will make you happy!

[1398-Days]

Thank you so much for the advice everyone!  I'm going to try talking to my mom about it and explain everything to her. My dad has also suggested that I go to the doctor to get tested, but I've been putting it off because I'm not sure if I can handle being sick for 1-2 months.. 

Also, this is kind of unrelated but is there anything I need to worry about when going to the dentist?? Just in general for cleanings, and with the orthodontist.. I'm getting braces soon and I don't know if the stuff they use for impressions (or anything else, really) could have gluten.

Thanks again for the advice  

[Gemini]

I have had more dental work in my life from Celiac Disease and Sjogren's Syndrome, which I also have, and I have never found anything at the dentist which contained gluten.  I have had 3 dental implants and they did impressions up the whazoo on me and I had no problems.  I did a lot of research, calling the companies that make these materials and they are aware of the problem.  The impression goo or silly putty as I like to call it, is thickened with gums like xanthan or guar, which are gluten free. You definitely want to tell your dental team that gluten is a huge problem for you but I do not want you to worry about this because fixing your teeth and taking care of them is so important.

You are a very smart 17 year old and ask good questions!  Get that Celiac panel done ASAP and see what it shows.  Also ask for gene testing to see if you carry the main genes for Celiac.  If both are positive, then maybe the doc will diagnose you on this criteria, instead of making you stay sick for an endoscopy.  Relax......the gluten-free diet is not hard, it is just inconvenient at times. You are young and this is good that you are figuring it out. I was 46 when I was diagnosed, after many years of illness and 3 other autoimmune diseases to boot! I do not want other people to go through what I did. Your father is a good man for supporting you on this!

 

[Darren]

Your dad is what all dads and parents should be. Tell him we think hes a great dad!  You'll be ok and get through this don't worry. We are also here to support you! 

[1398-Days]

Okay, thanks! And I'll definitely talk to my dad about getting tested.

And one more question hehe, how long does it take to feel.. normal after you get glutened? I got glutened 3 weeks ago and the physical symptoms are gone, but I've been really anxious and even kind of depressed at times. The first week after I got glutened was pretty awful, I was really sad and didn't feel like myself at all. So this isn't nearly as bad as it was at first. I'm a pretty happy and positive person (even despite all that's been going on over the past few months ) so it really sucks to feel like this. I've also noticed that I get irritated quite easily. This was the first time I had actual gluten since I went gluten free aside from cross contamination. It was just a few crumbs (crumbs in the butter! my fault for not paying attention ) though.. 

Or could I be feeling like this because I'm not eating enough? I know I'm not.. My parents try, but they still don't get many things that I can eat, except for dinner. So a lot of times I don't even eat breakfast or lunch and just eat dinner. And if I do eat at all during the day it's usually just an apple or a banana or something. 

[Maddi]

I was tested for Celiac and the results were negative. I was doing very well for months and months my anxiety and depression were gone and my mood swings were so much better but recently I've been eating some processes foods and maybe have gotten cross contamination. Wellllll back come the anxiety and depression...the insomnia. ..the hot flashes...the anger. So yes, it seems I'm very gluten sensitive. When I eat gluten on purpose I get severe fatigue and dizziness severe anxiety (with panic attacks), pretty bad depression. So yeah.... even if you test negative for celiac you can be gluten sensitive and unfortunately there isn't a current way to test for that. Just try to talk to your mom. .. have a heart to heart. .tell her your symptoms... maybe show her this forum..or Google non celiac gluten sensitivity symptoms and show her how your symptoms compare. I'm sure eventually she'll understand. Tell her that you love pizza and bread but that it makes you sick.