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MurderToWheat

Rant.

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first of all, hi, i'm rae, i'm 15 and I just need somewhere to vent... I think you guys will understand.

I just discovered (self-discovered) that i'm either gluten intolerant or celiac through putting two and two together, my mom has it, i'm pretty sure my dad has it but doesn't know, and I.. I am just so angry! Let's start from the beginning here. Throughout my childhood, I don't remember feeling anything ever. I can't recall ever feeling something, you know? This leads to almost no memories, I don't even remember my family in my past, not up until teenager-hood. I look back on my childhood and feel detached, but I do remember the days spent ill because it was every second day that I had painful diarrhea. I remember missing a lot of school, I remember my friends parents knocking on the doors when I was in the bathroom always asking if I'm ok and me just thinking it was completely normal to spend 3 hours at a time in the bathroom feeling like you want to die, and I remember the weird sickness I got where I would wake up in grossly soiled pants with some sort of fever. I remember going to sleep and crying because my joints and body hurt so much and I just didn't know why, and waking up sweating and disorientated, unable to close my hands. Or not being able to go anywhere because I couldn't walk for too long without severe ankle pain. And then, I remember the names that will always haunt me because I was called it so often, "slow" and "the mumbler". God, I was insulted so often by my family and peers, I just could not move any faster than an inch a minute and I didn't have it in me to move my mouth enough to communicate,that taunting still haunt me. I remember being depressed and suicidal from the age of 8 because I was so tired for "no reason" that I was seriously considering death... I got acne and rashes all over my face back stomach and shoulders and my nutrient-lacking skin left the scar of every one, I feel practically deformed and my teeth are thin enough that breathing out of my mouth hurts them...and all of this because of a food that is openly shared around the world?? WHY aren't we testing children for gluten intolerance before we feed it to them, when 15% (says this site)-30% (said dangerous grains) may have some form of gluten intolerance or celiacs disease...!!! Why are we even feeding children wheat when no man is fully adapted to it... WHY isn't this information being taken seriously and spread around!My family thinks i'm over exaggerating and isn't making it a big deal, they get mad at me when I bring it up and tell me i'm obsessed with it and that how I feel is all in my head and then they ignore me and I just try tell them that I need help getting off of milk and wheat because I can't do it alone. How can they be angry at me for this? I don't have money to buy my own food and my mom doesn't either because the stuff I want she says is too expensive and she doesn't like me nagging her to get anything specific, but there is nothing in this house I can eat without eating dairy or wheat and I feel trapped in this illness!! I've been using the tiny amount of money I had started to save for college for on food for myself so I don't feel sick this last few months but now it's gone and i'm back to wheat and milk because I relapsed. Aaaaaaah! This month and today it is it's starve myself or make myself sick! (Yes, I should get a job now I agree!)

I realize there is a positive aspect to this, I have found what makes me sick, HALLELUJAH!! how do you spell that. I have the ability to experiences life for the first time, this can be a new world for me now!

There are more extreme and horrific stories on here, but if you listened to my complaints (lol) I really appreciate it. I need to rant without somebody telling me i'm obsessed and to shut up, so thankyou all! :)

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Hi! I'm 14 and I know how you feel, doesnt it suck? I had a lot of different problems than you, but hey, they all lead back to the same thing right? GLUTEN. Dang that gluten!

Im also dairy free too!

I dont know how to convince your family to help, I dont know how they act/react to things but I hope you can figure out something soon! You said your mom is gluten free, doesnt she have any food you could eat, thats also dairy free? I mean for now, until you figure it out, try to stick to simple cheaper things that will last. Beans, rice, veggies, fruits, nuts, etc. Those will atleast sustain you until you get it all figured out, plus its fairly inexpensive.

I dont really know how to help you out much, but hopefully just being here to support you will be enough for now! Good luck and best wishes!


'You can't start building a better tomorrow if you wait until tomorrow to start building'

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My heart breaks for you. It really does...you are so young to have to endure this kind of pain. What is frustrating...is that the expense of these foods SHOULD not cost so much more. Just because you have Celiac or an intolerance or allergies...does not mean you are rich and I am appauled that these items are so expensive. Have you thought about some cooking classes or just getting some recipes and perfecting them to your taste? Cooking can really be a lot of fun and could benefit you a lot. I am so glad you came here to vent. I am new to this board so I am just learning....therefore...I don't have a lot of advise just yet. I know these folks here can be really helpful to you. Hang in there sweetie!

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Oh, my....your childhood sounds like mine. I mainly remember that, as a child, I couldn't control my circumstances. You're in a difficult situation right now and one that needs to be shared with someone who can advocate for you. The fact that your parents are not ensuring that you receive proper foods and nutrients is tantamount to child abuse. It sounds as though they are essentially clueless to this possibility, but you are describing a Hellish life...and I'm so sorry you have to go through this. You're correct that you may have to get a part-time job--that's how I was able to afford to buy my own food when I was an adolescent and teenager. However, your parents need to understand that it is their responsibility to provide you with adequate, nutritious food--at least fresh fruits, vegetables, nuts, and meat.

The symptoms you recall from your childhood are textbook examples of what happens to children who have celiac and aren't diagnosed. At a recent conference, I learned that children with celiac have reduced bloodflow to their front lobes, which can cause fuzzy thinking, memory glitches, mood swings, depression, and ADHD. Also, plaques can form throughout their brains, further causing neurological problems that can last a lifetime. With such severe symptoms, you NEED to seek out an adult who can help you with your situation at home, get you proper medical care, and make sure that your teeth get checked. Are there any celiac groups near your home? I know that the Gluten Intolerance Group of North America has a national celiac support group for teenagers. You can find information on their site at www.gluten.net . Perhaps you can find support and help there.

Please feel free to rant about your situation--this is a safe place to do so. I'll be keeping you in my thoughts...and please ask if you need help.

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When you get back to school talk to the counselor and the nurse. They might help you with your parents. If you have been this sick, it is their responsibility to get you help. Going to a hospital and explaining all this may be your last resort as they will have to get you a temporary guardian if your parents continue to refuse to treat you. Go during the day Monday thru Friday to have the best help. Hope it doesn't come to this but this is child abuse whether they mean it or not. I'm hoping the school can help you get thru to them. Good luck, honey!


 

 

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I would suggest this page to your parents also. They may not be open to it...but perhaps your mom would get online and talk to some of the folks on here...she would see just how serious this is....and maybe get some tips to help you out.

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I'm so sorry to hear about what you are going thru. It's not easy being a teenager let alone with celiac that no one seems willing to help you out with. On the one side, you are taking matters into your own hands, and at such an early age, your getting yourself educated on this, but don't have the resources to deal with it. You can get some good information from this site, but I would also, like a pp said, go to your school counsellor or nurse, or maybe a youth drop-in centre. They hopefully could arrange a sit down with your parents, educated them and help with the situation. My heart goes out to you. I hope you can get this sorted. It really sucks that gluten-free foods are expensive... seems like everything we should be eating is expensive, and all the bad stuff is cheap... go figure? Take care, we all need a good rant every once in a while.

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Hi, Rae and welcome I'm so glad you found a place to rant. You can come here all you need.

I agree with everyone telling you to go to a counselor or nurse, or find a helpful adult. You probably need celiac testing, which does require you to eat about 4 slices of bread worth of gluten daily for 4-6 weeks. (Yes, ugh. I know.) If you can get a positive result, you will have a much easier time convincing your parents.

Your desire to get a job is great, but your parents do have the responsibility to provide you with nourishing food that doesn't make you sick. They do not have the responsibility to buy expensive gluten-free bread or cookies so don't confuse "want" and "need".

I suspect there are actually things in the house you can eat. Is there a jar of peanut butter? A bag of rice or dried beans? Potatoes you can put in the microwave? Are there any fruits or vegetables in the fridge? A bag of plain corn chips or plain potato chips? Eggs you can cook? You're not going to be able to be choosy until you get out on your own but I'm a little surprised everything in the house has milk or wheat if your mom is celiac. In a situation like this, you may have to learn to eat some foods you don't like very well in order to recover from your illness. If you do have to use your own money, rice and beans are probably the cheapest complete protein and will sustain you without making you sick.

Good luck, and I am very glad you figured out what has been making you sick. You have a tremendous head start over people like me who lived with celiac all our lives and didn't learn about it until we were in or 30s or 40s.

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Your post literally brought tears to my eyes. I am so sorry that you have had to deal with this. You do need to go back on wheat for testing if you need to have testing done.

There is a lot of naturally gluten free food, you don't have to eat expensively. Eggs, fruits, nuts, fresh meats, potatoes and rice are all naturally gluten free. Check your cupboards for those and try to plan meals around them. Perhaps you could do the cooking as often as you can, you can make a stew using cornstarch to thicken, PM me or ask here if you don't know how. Ground beef with a can of tomatoes and rice tossed in is an inexpensive gluten-free meal. Rice with some beans or sometimes I just use peas for protein and add some corn. Pnut butter spread on fresh apple slices or celery is a good snack.

There is a lot that is inexpensive and safe. If you live in an area that has a Wegmans all their gluten free name brand food is marked with a circle G.

Please know you can heal. I had severe neuro impact that started in childhood. Know that you can heal and work toward the future. I know you are suffering greatly, you may want to see if you can contact a counselor to help you in the process. Call your local mental health center and see what is available to you. You are also old enough to make a doctors appointment for yourself. Call your ped and make one and tell him/her in detail about your symptoms and the relief you got from trying the diet. If your city has a walk in clinic go, even a Planned Parenthood clinic will see you for low or no cost and they can guide you from there if they are the only clinics in your area.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I was 10 when I started having symptoms. 18 when DX with *IBS* My memory is shot. Long and short term. I feel you sweetheart.

You will receive a lot of support here. I am glad you are posting.

Tiff


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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God bless you, rae, when I was 14 I was clueless! I'm 47 and just beginning to understand why I can't stand to (even when I'm feeling fine) eat a sit-down meal with my family (my husband calls it my eating 'disorder') because when you ate dinner at my house when I was a kid my dad made us sit there *if you got up you were Done and got no dessert* of course, I needed to get up and use the bathroom a lot. ''why didn't you go before you sat down to eat'' looking back there were a lot of clues! and I was clueless... imo you are waaayyy ahead of the game and if you can start taking care of yourself now, you can avoid many, many unpleasant and unhealthy things including, I think, some bad life choices I paid dearly for but maybe if my brain wouldve been firing on all six I would have chosen more wisely. so, more power to ya, kiddo. this forum has been a Godsend to me and I hope it is for you too. :)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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I am 23 and just got diagnosed, after having a baby. It adds up, I always had a "nervous stomach" and thought that everyone had an constant upset stomach. I'm sorry you have to deal with this, but at least you know now. I would say, just stay away from processed foods. Eat a lot of fresh fruit and veggies, plain chicken breast, read your own labels. It's going to be hard to have to grow up a little faster than normal, but it's also apparently necessary. Do what you can with what you have, where you are. Plus, you;ll be really healthy.

Hang in there! I hope it gets better for you!


Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

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I feel for you and hope you follow some of the other posters good suggestions. Good for you for following your instincts. You mentioned your mother has celiac. Does she maintain a gluten free diet? If not this would be a good time for you both to learn together.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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