Can Someone Please Help Me?...no One Will Listen!

[Lilymylove]

I have been wondering whether I have Celiac Disease for a while. I have even read a book about it. I am pretty certain I have it based on my symptoms and such, but no one will listen to me (Parents and doctors included...I am 17). My symptoms are basically...: I have pain every time I eat something with gluten in it. Abdominal and even headaches. Often I have to go to the bathroom after I eat (bowel movement). I also often must sleep after eating. I always have digestive pain after eating most meals (most have gluten) and need to lay down. I always ask my mom/relatives/friends if they feel this way when they eat and they all say no. I have felt this after I eat for so long I thought it was normal. I have zero energy. Zilch. I have gone to a few therapists about the energy thing and several think I have ADHD. I do not know about this, but I do have anxiety and fatigue very much so...I cannot get anything done. I just know I don't feel normal/good. I also have moderate, persistent acne. At times it is also quite itchy. I have it on my face, chest and back. I have looked into DH and I am not sure this is what it is...they look quite similar. I never have cystic zits. They are small and red. It is worst on the sides of my face and chest and that is where it mildly itches.

I first found about Celiac on an acne forum. I was trying to find natural methods for clearing acne because the standard things for acne do not work for me. I read about Celiac there and many people there claim to have it. I decided to conduct an experiment. I stopped eating gluten for about a month. My skin cleared up significantly! My family even noticed. After this month one night I decided to eat an Oreo. That was a horrible idea. Within several minutes I was keeled over in extreme pain. I had stabbing pains in my stomach/intestines. Since then I have gone gluten-free for my skins sake for a few weeks at a time. I noticed the longer I go without eating it and then eat it again, the more pain I feel and the sicker I get. It is so hard...as I'm sure all of you guys know too well. I think I am addicted to it. I have told my doctor my thoughts and he said it was possible I was intolerant... but did not ask about it further.

I found out a crucial piece of information this weekend. I was staying with my dad's mother (my parents are divorced so I do not seem him very often) and we got to talking about her deceased husband...my grandfather. He died in '87. I did not know this. She told me had Celiac Disease. He died from cancer in his fifties. I brought this up to my dad later and he told me he has noticed gluten does not sit well with him. My dad has severe digestive problems which includes gastritis and problems with ulcers.

After reviewing all this information I almost certain I have it. Is it worth it to get tested? From what i have heard it is sometimes quite difficult to prove you have it and can take my tests.

I also want to know why I have had to struggle with this in silence and have DOCTORS ignore me when I ask for help. Why did I have to self diagnose myself like this? For a fairly common disease it gets little attention in the United States. I am quite fed up with doctors in general. You really have to prod them to get anywhere.

EDIT: I forgot to mention that when I did go to the doctor he said I was pretty low in iron and vitamin D

Can someone please help me? I would greatly appreciated any advice

[Roda]

When you mean that your parents won't listen to you do you mean both your mom and dad? I notice you said they were divorced and you don't see him often. Could you take the information that you found out about your grandfather and ask if your father can get you an appointment to get tested? You and your dad can request this it doen't only have to be your mom. It sounds to me like you are on the right tract. If you want tested talk to your dad and grandmother and maybe they can point you in a direction to a physician that would see and test you since your grandfather had it. Someone diagnosed him.

[Lilymylove]

When you mean that your parents won't listen to you do you mean both your mom and dad? I notice you said they were divorced and you don't see him often. Could you take the information that you found out about your grandfather and ask if your father can get you an appointment to get tested? You and your dad can request this it doen't only have to be your mom. It sounds to me like you are on the right tract. If you want tested talk to your dad and grandmother and maybe they can point you in a direction to a physician that would see and test you since your grandfather had it. Someone diagnosed him.

The thing is I am pretty sure from the way my grandma was talking he was not very strict with his gluten intolerance. He was not in good health either which is why he died relatively young. My dad is the same way. He is the type of people who don't take medical things seriously. He thinks he knows what is best. He is a very smart man his ego is getting in the way in regards to this. He loves cooking but is often in pain after eating with classic Celiac symptoms. Deep down I think he knows he is gluten intolerant but is afraid of acknowledging it. As we all know it is integral to much of cooking. I only see him a few times a year (he lives a few hours away) and I doubt he will take me to a doctor because my insurance does not cover many doctors. I think I am going to ask my mom to make an appointment with my usual doctor. He actually did listen to my thoughts last time I saw him. My mom wants to help...I just think no one wants to acknowledge I have a problem (or that they might have one). They are also ignorant about the potential severity of the disease. Being young is not easy because adults often do not take what I have to say as having any validity. I'm annoyed that this is sounding like a sob story. I don't mean for it to sound that way. I am just frustrated. It sounds annoying to say "People just don't understand!" But literally, most people are ignorant about Celiac Disease which can be difficult obviously... as a kid you just end up sounding like a whiny person who is being picky.

[mushroom]

The thing is I am pretty sure from the way my grandma was talking he was not very strict with his gluten intolerance. He was not in good health either which is why he died relatively young. My dad is the same way. He is the type of people who don't take medical things seriously. He thinks he knows what is best. He is a very smart man his ego is getting in the way in regards to this. He loves cooking but is often in pain after eating with classic Celiac symptoms. Deep down I think he knows he is gluten intolerant but is afraid of acknowledging it. As we all know it is integral to much of cooking. I only see him a few times a year (he lives a few hours away) and I doubt he will take me to a doctor because my insurance does not cover many doctors. I think I am going to ask my mom to make an appointment with my usual doctor. He actually did listen to my thoughts last time I saw him. My mom wants to help...I just think no one wants to acknowledge I have a problem (or that they might have one). They are also ignorant about the potential severity of the disease. Being young is not easy because adults often do not take what I have to say as having any validity. I'm annoyed that this is sounding like a sob story. I don't mean for it to sound that way. I am just frustrated. It sounds annoying to say "People just don't understand!" But literally, most people are ignorant about Celiac Disease which can be difficult obviously... as a kid you just end up sounding like a whiny person who is being picky.

Lilymylove, you can sob away in my presence.. You are not being picky or whiny; you are trying to reclaim your health, your most valued possession, believe me. Some of us pick and whine, or suffer in silence, into our 50's and 60's, not a good way to go, so don't be be afraid to make your needs known.

With the family history and your symptoms, I think you definitely need to be tested for celiac disease. Read all you can on this forum, and print out relevant information for your parents to convince either one of them that you need to be tested. As you seem to be well aware, there is a strong genetic connection with celiac disease and with your symptom history you need to follow through before you experience the damage that many of us here did through ignorance. With the knowledge out there today there is no excuse for ruining another life through ignoring the obvious. I know it is hard when you are young to be taken seriously, but this is too important for you to wimp out and not make your needs known.

All this being said, there is always a chance of your testing coming out negative, even though you are gluten intolerant, and if this is the case you must find the strength to go gluten free despite the results, because your health for the rest of your life may depend upon it. If your symptoms improve/go away by removing gluten from your diet, then that is what you must do, and do not let anyone dissuade you from it or you may suffer worse consequences later.

I wish you nothing but good health and freedom from pain and consequences.

[pewpewlasers]

I understand where you are coming from. When I was a teenager and even younger and I had severe digestive and stomach problems; no one listened.

Doctors seem so quick to dismiss what you have to say about your body. You are the only one who knows how you are feeling!

I think it's a good idea to get it checked out. It is better to be aware early and get it taken care of than wait until you are older and other symptoms or other autoimmune diseases start coming up.

Most doctors I have seen have no idea about celiac. Remember to bring it up and say you want to be tested and see a gastroenterologist.

I know how it is to grow up feeling like all these symptoms are normal because you live with them for so long. However, they are not so it's best to look into it.

Good luck!

[chasbari]

trust your gut instincts and here's hoping for much strength for you so you can do what is necessary regardless of whether you get family support or not. Keep hanging around here where it is perfectly ok to voice your frustration. No one sees through the eyes of a celiac like a celiac and even though many try to understand it just isn't the same as living it. I know that having a doctor confirm what we know helps us to be taken more seriously by other adults but rest assured, with what you have described thus far you will be taken seriously here. Sounds like you have already done a lot of studying on this.. Good for you! Check around to see if there is a celaic support group in your area and if someone there can recommend a doctor who is well versed in handling proper diagnosis of celiac. I ended up with the best GP and gastro this way who tested me even though my blood test was negative because I had gone off gluten in order to survive.

CS

[ang1e0251]

It is so hard to get a dr to take you seriously and I was 50 YO when I talked to my dr about it! I can imagine a 17 YO really gets blown off.

You have a couple of problems with getting tested. You've been of gluten mostly for awhile now and that will throw your testing off. You will need to eating gluten for about 8 weeks for good test results. Are you able to do that? If your dr doesn't know much about celiac disease, he may want to test you now and that will probably come out negative. After that, he may not listen to you at all. If you don't think you can eat gluten that long, then you & your mom can ask your dr if he will dx you by your dietary response and other clues. You can point out that your gluten-free had celiac disease and that your dad has digestive problems. Would your dr take into account a genetic test? With those clues, you might get a dx.

You really need to get your mom on your side. See if she would read info here and ask any questions she has. Print out some info for her and the dr to back up what you want them to know. She can tell the dr the difference she is seeing in your health and behaviour since you went gluten-free. She can probably say how she saw you feeling when you ate the oreo. If she pushes, the dr will do what she wants.

I'l be thinking of you and hope things go your way!

[Robinette]

It is so hard to get a dr to take you seriously and I was 50 YO when I talked to my dr about it! I can imagine a 17 YO really gets blown off.

You have a couple of problems with getting tested. You've been of gluten mostly for awhile now and that will throw your testing off. You will need to eating gluten for about 8 weeks for good test results. Are you able to do that? If your dr doesn't know much about celiac disease, he may want to test you now and that will probably come out negative. After that, he may not listen to you at all. If you don't think you can eat gluten that long, then you & your mom can ask your dr if he will dx you by your dietary response and other clues. You can point out that your gluten-free had celiac disease and that your dad has digestive problems. Would your dr take into account a genetic test? With those clues, you might get a dx.

You really need to get your mom on your side. See if she would read info here and ask any questions she has. Print out some info for her and the dr to back up what you want them to know. She can tell the dr the difference she is seeing in your health and behaviour since you went gluten-free. She can probably say how she saw you feeling when you ate the oreo. If she pushes, the dr will do what she wants.

I'l be thinking of you and hope things go your way!

[nora-n]

My daughter had all these pains after eating too, and doctors did nothing (they told me that belly ache in kids is always psychological...) and first later when she tried gluten freee and noticed she got better immediately, she realized she did have problems with gluten.

fast forward, she had negative tests after being back on gluten for the challenge, but the overall dramatic differences while being off contra on gluten did allow for a positive diagnosis based on symptoms. She does not cheat.

[Lilymylove]

Thanks for all you replies. I think I'm addicted to gluten. I can't seem to get myself not to eat it for longer periods than a few weeks. Is this normal?

[flourgirl]

I've read about gluten being addictive. I think most of us craved (bread, bagels, pastas) gluten things at first. After 2 years, I still sometimes think about how yummy something would taste. BUT.....I was deathly ill before my diagnosis, so I have a strong motive to keep me off the stuff. Think of it this way......many poisons prove to be addictive, and they all can kill you if you eat enough of it. Hope that helps....you can do it!

[gf-soph]

I definitely found it addictive - I used to jokingly say that bread was my crack - specifically white, very fresh, very high gluten. I could eat slice after slice, and I had an addictive relationship to it that I haven't had with anything else. I even worked in a bakery for a couple of years!

I have heard it said that you often crave the things that are worst for you, and for me that was definitely true.

It sounds like you have had noticeable benefits from the periods you have been gluten free, maybe it hasn't been long enough to break the addiction though. For a couple of months after going strictly gluten free I would have killed for a croissant or good white bread, but this has really faded over time.

Good luck finding a good doctor, but don't be too discouraged if you don't get the answers from them. It sounds like you have a good idea that you need to go gluten free, and you will find a lot of support here.

Sophie

[TrillumHunter]

Lily, you are 17. A parent doesn't need to come to the doctor with you. Tell your mom you are sick and you need to go to the doctor. This is true, correct? When you are there tell the doctor your grandfather had celiac (true) and your dad is having problems like that too that he is seeing a doctor for-also true. Tell the doctor it was recommended that you get tested for celiac as well because you are having all these problems. Don't tell him you "read on a website" about all this stuff, just tell him your family history. Do this in a mature, matter-of-fact way without crying or carrying on too much.

You are very close to the age of adulthood in this country. You can, and should, be proactive about your own body. You aren't being sneaky or underhanded. You have a right to have a say in your medical care. Stand-up, take a deep breath and make a move toward being an adult.

You can do it!