I Need Help, Someone Give Me Answers... Please

[Kocoyboy]

Hello Celiac.com, this is my first post, this is basically my story, i have been having chronic diarhea, fatigue, and just plain depression for about 5 months. I know i wasnt getting better by any means, so, my first visit to the doctor which was a bout a month into my illness, he told me it was a virus that was tearing away at my stomach lining, so i was like okay what do we do about it, he replied with chicken broth and bread, no fibre, basically plain food, so i went on that for a week and if anything my symtoms got worse, i also went to emergency a couple of times for pain in my abdomen and the doctor their ordered a stool sample, when i got the results back everything came back normal. I was so frustrated, then my doctor then said i could have some coloneitits (or however you spell it) and need to go to a gastrointerologist, so me and my mother booked an appointment and waited, while my symptoms got worse we returned to the doctor only to find out that my regular doctor has returned from his trip, i was so frustrated with the doctors i didnt care, when i went into see my doctor he felt my intestines and ordered a bunch of tests. He seemed disgusted by the amount of tests that werent there already. When my tests returned he said everything is normal but i have bacteria in my urine, (i am a boy, and no its not an STI lol), so i was sorta relieved by this news and also frustrated that i didnt get diagnosed 3 months earlier, (my urine was noticabely different but i didnt really say anything to anyone), so i was put on these antibiotics and on my way, while the antibiotics only gave me nausea, and nothing else, also my urine seemed unchanged i returned to the hospital saying how my urine is unchanged, he then went over my blood work and said i have celiacs disease. I was blown away at the fact that he couldnt tell me this the first trip, but was also madly relieved that i finally have a diagnoses. So going into the present day, where i have been gluten free for about a week and a half..... i honestly feel no difference.... im constantly depressed, my diarhea seems to not go away, and the general discomfort in my abdomen doesnt seem to change.... I am a grade 11 student, who has had to miss so much because of this illness, and seems to not be gettign better, i couldnt play football, my favourite sport because of it, and i just wanna get back to my normal, funny, awesome life i have... i honestly just want answers, i am hoping to get a biopsy done to confirm celiacs, or find anything else going on down there, another note, my throat has become to hurt to swallow, my brain is cloudy all the time, and i still feel depressed, i came on here to beg for some hope, that will get me out of my slump, just someone please give me answers as to why i am not getting any better at all......

[tom]

Hi Kocoyboy,

Hope you can feel better soon, it's tough when not seeing improvements.

Honestly, a week & a half is often not long enough to get settled into knowing what to avoid & to answer "where/what CAN I eat?"

Is there gluten-free food at school? If you're eating much processed food, would you be able to simplify your diet? For as easy as it can be, that can help a lot.

You may need to be dairy-free for a while. The Dr, imho, should've mentioned that.

[GottaSki]

Welcome!

I agree with Tom - transition takes time - the learning curve is steep - yet it does get better.

Hang in there & ask questions where needed.

[Celiac Mindwarp]

Yes, it is going to take a while longer yet.

Try to eat mostly simple foods to start with, like meat, fish, vegetables, maybe save gluten free processed foods like cookies for occasional treats.

Do you and your family know about cross contamination? This is where gluten sneaks into your diet, for example if you share a toaster with normal bread, or a knife gets used in butter for gluten toast and puts crumbs in to.

Do come and ask lots of questions, most of us have been through it and can help. It takes a while to get used to it.

It might not feel like it now, but if you get to know the stories of some of the folks here who took years to get diagnosed,, and have had a lifetime of ill health, you may be glad you have plenty of time to regain your health.

Good luck

[Kocoyboy]

Hi Kocoyboy,

Hope you can feel better soon, it's tough when not seeing improvements.

Honestly, a week & a half is often not long enough to get settled into knowing what to avoid & to answer "where/what CAN I eat?"

Is there gluten-free food at school? If you're eating much processed food, would you be able to simplify your diet? For as easy as it can be, that can help a lot.

You may need to be dairy-free for a while. The Dr, imho, should've mentioned that.

thanks for the feed back, i have been dairy free also, i come home for lunch everyday now, one more thing i need to mention... i seem to have episodes of feeling lousy around every three days, where the episode only last about 1-2 days, is this normal?

[shadowicewolf]

You are going through a withdrawl period. Gluten acts like a drug, your body becomes addicted to it. So its going to pitch a fit when it doesn't have it.

[1desperateladysaved]

Kocoyboy:

Sorry that you have suffered like this.

Get better: ***

Often right after my worst day, I experienced my best days. It isn't always a smooth ride. It takes a while to eliminate all gluten. I know the hazy, foggy mind very well. I had 30 years of it. BUT I tell you it is gone and has been for atleast a month, so there is hope for you! I had to do alot more than eliminate gluten, but the main thing is to do that for now and keep walking.

[Takala]

Try heading over to the cooking and baking forum here and doing some research on cross contamination, you may also want to send a parent over to see what to do with the kitchen, as it is a bit of a learning curve if there are also glutenoids in the house. You need to have a clean and uncontaminated work surface for your food preparation, this can be as simple as you lay a paper towel down on your work surface countertop or a plate to use as a cutting board, to having your own cutting board, own colander, dedicated tupperware storage, condiments- as in anything you dip a spoon or a knife into, such as butter, cream cheese, peanut butter, jelly, etc, your own toaster (recommend a toaster oven) your own gluten free dedicated teflon cookware, and if you use any wooden or plastic spoons or spatulas, those also need to be new and gluten free for your cooking. Cast iron cookware needs to be clean and dedicated gluten free. Anything porous needs to be new and gluten free dedicated. Anything non-porous, as long as it is clean, such as glass, ceramic, or stainless steel, is fine to keep using. Keeping this stuff marked with a sharpie permanent pen in its own storage area separate is a good idea, and you may want to get it all in the same color scheme.

If they are doing any sort of baking with regular flour, avoid it like the plague, as it gets in the air and all over the place. Some families will switch to all gluten free baking to avoid this problem, others, like ours, went gluten free all the way at home because it is just two people and it was much, much easier that way, especially if one bakes, and the other one will eat almost anything if it is halfway decent.

[anniebh]

I can sense your desperation. it's horrible to be living a full life and then suddenly it comes to a grinding halt. Just a few bits of advice from someone who's walking the same road. a. doctors do the best they can but they actually know very little, especially with diseases like this that cross physician specialist boundaries. Also, with the sore throat and some of your other symptoms, I would tell your doctor to run a thyroid panel (blood test). Often, people with celiac develop an underactive thyroid (hypothyroidism) which exacerbates many symptoms including gi bloating and discomfort. Next, pack on the (gluten free) supplements. Your gi tract is not absorbing what you need (which causes depression and brain fog), but taking vitamin supplements will help your system absorb more. Focus on ferrous fumerate (iron), vitamin B complex, zinc, magnesium, vitamin d, and a standard full range multivitamin. Take these daily for a long time until you feel improved. take the iron w/ vitamin c by itself on an empty stomach. These vitamins will be a bridge to you until your gi tract heals (up to 6 months or more). Stay persistent with your doctor, do research and tell him what you need. Walk into his office with a list of questions. He/she will pay more close attention to your case if you show you are engaged, intelligent and seek concrete, scientific answers, and show persistence. Also, you need probiotics. ALIGN brand is the only one that has 50% success rate in a double blind study. Take it every day for a few months at least. Lastly, AVOID GLUTEN LIKE POISON. It is really everywhere. YOu will need to become vigilant and eat nothing that comes from a package or bottle unless it is labeled gluten free. use whole foods in your meal prep- items that come to you in the form they grew, single ingredient type items. Don't eat anything you haven't prepared, even if your friends say it is gluten free. People who don't have celiac don't understand how important it is to not even consume a trace amount.

[GF Lover]

Don't forget to check any medications and pet food if you have pets.

Colleen

[eers03]

K,

Let's break this list down...

1.) You now have a diagnosis, so you aren't crazy, what you were feeling was real. You were right all along and it took the docs awhile to catch up. You are VERY young and it should give you a HUGE leg up on recovery.

2.) Your throat... You'll think this is crazy but it could very well be your nerves and anxiety. Mine did the same thing. Looked normal, no bulges on my neck, but I occasionally had a hard time swallowing. I think it was my stress level and nerves causing it. From what I've read, it happens to alot of people. After a month or so it miraculously worked its way out and it doesn't bother me now.

3.)Your depression... This is part of whats causing 2.)... I have been depressed for quite some time trying to navigate all this. I'm just now pulling out of it. I was a runner, played basketball, did some biking, motorcycling, atv riding, you name it! My depression brought all of it to a grinding hault. YOU WILL get used to the new normal. YOU WILL LEARN what your resources are and how to navigate it. Find a person or two in your life that you can really confide in and talk to them about your good days and not so good ones, it helped me alot. One day, things will click and you'll tell yourself, "I got this, I'll take it from here." Be patient, its not a quick fix. With time and sticking to the proper diet, you will be able to go back to living life.

4.) The urine thing... Mine was off too and couldn't really explain it. As it turned out, I had some prostatitis going on. If you have celiac disease, you can be more prone to getting or keeping infections longer early on.

5.) I snapped back into living life one day when someone close to me told me they felt sorry for me that I was going to waste a year of my life worrying and being stressed about this and potential downsides that I wasn't even dealing with. I finally reached a place where I decided that for each day God gives me, I'm not going to waste it anymore watching sports center on the couch and not living. I FORCED myself to call up friends and relatives, to go out and about running around, and living some life in general. It helped so much.

Hang in there, bro! You're in 11th grade and have so much to look forward to!! The fun days of high school only come around once! Live them and be sure to keep some gluten free travel bags with you when you are out running around or going to an away game. Also, you'll find that making your own gluten free pastries at home are the way to go! Buy some Pam's Chocolate cake/cupcake mix, follow the instructions to a "T", invite your girl over and impress her with your mad baking skills! She'll be impressed that the football player also has a softer side.

You're going to be great! GO LIVE YOUR LIFE TODAY!

[Kocoyboy]

Hello all, i have been starting to feel better in my gluten free endeavors, my depression is going away after my girlfriend finally told me that my time to be sad is over and its time to move on, things were starting to look up, however today i went out for supper with some friends and got a grilled salad and made sure everything was gluten free, it was and the waitress was reasurring that the cooks took extra special care, now tonight at midnight pretty extreme gas like pains running through my intestines, i go to the bathroom, have pretty bad diarhea and when i looked in the toiled bowl, undigested lettuce leafs were floating at the top.... Now im wondering if this is normal due to malasorptions, or something like that. Please keep in mind i have been gluten free for only around 3 weeks, and am sure i didnt gluten myself today. I hope to hear your answers, you guys really help a lot. And more updates \i had a throat infection and my bladder infection has cleared up, my only problem now is my intestines and this damn calculus class, (lol)

[w8in4dave]

3 weeks is still not enuf time for your intestine to heal all the way, from what I hear it can take a couple of years , I also had undigested stuff coming out. I have been Gluten free for a few months. It doesn't happen any more. You will get better slowly like I said "slowly!!" It can take a couple years to heal. But you will always be Celiac you will always have to be Gluten free.  

[kareng]

3 weeks is still not enuf time for your intestine to heal all the way, from what I hear it can take a couple of years , I also had undigested stuff coming out. I have been Gluten free for a few months. It doesn't happen any more. You will get better slowly like I said "slowly!!" It can take a couple years to heal. But you will always be Celiac you will always have to be Gluten free.  

 

 

Just a note before more people start replying - This poster hasn't been active since March.  this thread is from Feb.  But at least we are on the current year! 

[w8in4dave]

Ohhhhh thats funny!!