17 Year Old, Don't Know What To Do Anymore

[Nina98]

Hi everyone,

I am a 17 year old girl living in The Netherlands, Europe. (Dont know if this is important but im 5'8 and weigh around 145 lbs) Two years ago I was diagnosed with glandula fever. Unfortunately it felt like this has never went away! I don't feel like a normal teenager. Im always tired, too tired to even get up sometimes. All my symptoms are:

- extremely tired

- retaining fluids in legs face and lower stomach

- bloated stomach

- bruising easily

- pain in my bones/joints!

- very pale face

- tired looking eyes

- puffy face and water retention under eyes

- depression

- mood swings

- angry for no reason (I get very angry for almost everything even when someone just asks me something I already feel that im getting angry)

- started having anxiety and panic likely attacks a few weeks ago

- I eat very healthy (nuts fish veggies and lots of fruits) but feel like im DYING.

- one of my friends told me this: sometimes you look so pale and then the next day you look tan, like you're wearing make up (I don't besides mascara) how come? THEN I knew the pale skin wasn't imagination!!

I started eating gluten free for a few days and I felt great doing it. Puffyness went away, less fluid retention, felt way lighter, no headache, less stomach bloat and less PALE!

I have been to my doctor for over 10 times in the last 2 years but nothing was ever found. His conclusion: it's in your head.. After this I started doubting myself too and started thinking, what are my symptoms? Am I just imagining them?

I started googling my symptoms and came out on a LOT of different things but then I saw celiac disease and read forums for like 2 full days (lol). I felt releaved because I really think this could be it. I now started to eat gluten again because I read you have to eat them before testing your blood.

My family (mom grandparents and uncle mainly) have history of stomach issues, depression, thyroid problems and borderline disorder. They have never been tested for celiac disease.

Now, what do I do next? Please help me

[Maddi]

I'm not am expert by any means on this subject but like you I have a lot of your symptoms and I'm still waiting to get the call from my dr's office for my blood test results but from what I was told you can still get a blood test for Celiac since you've only been gluten free for a few days. Also, if you want an endoscopy you'll probably want to be on gluten so that your biopsy is accurate. Maybe try to get back on gluten until all your testing is complete. (After I was gluten free for about a week or 2 with some issues being glutened, I then tried to go back to gluten but my reaction was worse than I expected and my severe anxiety came back along with dizziness and insomnia and a pretty bad tummyache so I decided I didn't want to go back to gluten but I went to my doctor and he did a blood test). If you can go back to gluten get tested (to see if you have Celiac or Non celiac gluten sensitivity) and then after testing is done just go back to your gluten free diet since it seems to be helping you!

[Nina98]

I'm not am expert by any means on this subject but like you I have a lot of your symptoms and I'm still waiting to get the call from my dr's office for my blood test results but from what I was told you can still get a blood test for Celiac since you've only been gluten free for a few days. Also, if you want an endoscopy you'll probably want to be on gluten so that your biopsy is accurate. Maybe try to get back on gluten until all your testing is complete. (After I was gluten free for about a week or 2 with some issues being glutened, I then tried to go back to gluten but my reaction was worse than I expected and my severe anxiety came back along with dizziness and insomnia and a pretty bad tummyache so I decided I didn't want to go back to gluten but I went to my doctor and he did a blood test). If you can go back to gluten get tested (to see if you have Celiac or Non celiac gluten sensitivity) and then after testing is done just go back to your gluten free diet since it seems to be helping you!

Thanks for the quick reply!!

Yes I will eat gluten again, I guess I have to.. I also forgot to mentoin that I did get dizzy and lightheaded a lot. Also have really tight muscles especially in my thighs. It sucks and honestly I hate living like this, no wonder I feel depressed. No one (not even my family) takes me serious anymore because the doctor says im fine. It hurts when they get mad at me for being in pain and wanting to go to the doctor again!!

I used to be full of joy, lots of energy, play lots of different sports and be very social, happy and just a nice person to be around. Now im nothing like that anymore, I feel like my personality completely changed and I don't feel like myself anymore

[Maddi]

I know exactly what you mean. Never in my life have I ever been depressed or anxious. My anxiety is gone (3weeks gluten-free) but I'm still depressed mostly bc I just want to feel normal again. I want to gain weight and I realize it'll all take time but I'm desperate to just feel like myself again. (It's been so long since I've felt normal and not tired) I'm also scared that this might not be my solution since like you I've seen countless doctors and they all say I'm fine that I just need to eat.... the problem is that I do eat... a lot more frequent than I used to!! And I'm down to 93 lbs. Anyways to respond to you yes, a lot of people with gluten probs suffer from dizziness. I, like you, felt like I was dying. I'm no longer fatigued but I'm still tired especially after meals so of course we want to feel better quickly but we have to keep in mind how long we've been sick for (for me it's been 2years.. with worsening symptoms for 5 months). So although you might feel a lot better with symptoms going away.... some symptoms take time to go away! I hope you get your answers and feel better soon! ! Oh and keep us updated with your testing and progress!

[Maddi]

Oh and mood swings and changes seem to br soooooo common. I get sooooo angry over everything when I eat gluten. I feel as if I can't control my emotions. I used to be able to brush things off and when I eat gluten I just explode like a crazy person. /: but good news! If you have Celiac all that will go away with your gluten free diet!

[Nina98]

Thanks for the reply,

Last night we went out for dinner and guess what? My glands are swollen and they hurt, stomach bloated like a balloon, sore throat and my neck hurts!! Also very tired (I just woke up).

Hopefully seeing my doc tomorrow, will call them as soon as I wake up.

Do you know about a connection between mono and celiac? I had mono almost two years ago and I haven't been the same since. I don't think I ever fully recovered from it because I still have the same symptoms + a lot more. The last 8-10 months all my symptoms got worse and new ones came in. It sucks.

[Maddi]

No problem! Bc I'm new to this I've been reading a lot about Celiac and they say that the gene is usually triggered by stress (virus, surgery, pregnancy, emotional). My symptoms got so much worse while dealing with my mom's health issues (everything turned out fine thankfully but I'm an only child and I had to do go through all the stress of thinking there was something really wrong and making and going to all of her appointments). So yes mono could've triggered your Celiac. There are people who are fine all of their lives and then all of the sudden they develop Celiac (I was a VERY healthy child) I'm now 26 and I'm beyond thin and have felt like I was dying. I'm now feeling a bit better. (: I'm now finding out other food intolerances that I have. Be positive and definitely make that appointment with your doctor. And don't be discouraged if your blood tests come back negative, your biopsy can come back positive. I've even read about people being negative until they finally test positive! I tested negative in February but my issues got wayyyyy worse in April. So obviously I have something going on. I also had an endoscopy last year which was normal. These things don't mean anything bc things change... you're healthy one day and unhealthy the next. Also non celiac gluten sensitivity can cause pretty much the same symptoms as Celiac even anemia! Hopefully you get your answers as I know there's nothing worse than doctors saying your healthy when you don't feel healthy at all.

[Maddi]

Oh and idk how I missed this but you mentioned people in your family having thyroid disease well all of my grandmother's family (her included, have thyroid disease! and my grandmother has ibs and she's 96 lbs but shorter than me). But no one in the family (that we know of) has Celiac... I don't know I'd they've been tested. But they say thyroid disease can come along with Celiac (autoimmune diseases come together in packs) oh and my dad's twin sister just got diagnosed with Fibromyalgia... so it could very well be a problem with gluten... who knows. If my tests come back negative i want to get tested to see if I carry the celiac gene.