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Amberg330

Overwhelmed depressed and just plain sick

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I am not sure where to start. I haven't introduced myself, so I'll start there. My name is Amber... I've been sick as long as I can remember. In 6th grade I had to have a doctor's note that pretty much just let me get up in the middle of class and go to the bathroom without asking. I remember first period being a drag, everyone whispered behind my back and some thought it wasn't fair that I could just get up and go out of class... But they didn't know what was going on. I remember doctor's diagnosing me with gastroenteritis and telling me it would pass. I had to take milk of magnesia on a regular basis because it was a month without going to the bathroom then a month of going 15-20 times a day. I wouldn't even go out to eat with my parents anymore, I would make them just bring me something home and I would eat in my room, knowing the bathroom was right there and I was home made me feel more comfortable. I missed so much school I wasn't able to get my license at 16, I had to wait until I was 18. (even though I had dr's notes, can ya believe that?) I always missed first period because the mornings were the worst. No one ever told me what I was eating was the cause. Just thought I'd live with this my whole life with no treatment. For the next 10 years, I was diagnosed with ibs , nervous stomach(even though I wasn't nervous about anything) and a "maybe" I had a gluten intolerance. It wasn't until about 7-8 months ago I finally went to the ER, yes the ER. I had had enough, and I didn't have insurance. I was working full time(still am) I would run to bathroom 3/4 times after breakfast, 5-6 after lunch and about 4-5 more times before I got off work at 430. It was becoming too much. I was constantly tired, couldn't keep my eyes open felt really weak and even though I was getting 9 hours of sleep every night I felt like I hadn't slept in months. One day I remember telling my boyfriend I had had enough and I wanted him to take a trip to the er with me. They did blood work first, which is where they found i did have the antibodies , and then they told me I would need to follow up for an endoscopy. That was a lot of money  especially without insurance and it took some time but I got there .. To find out most of my intestines was already damaged and would never fully 100% heal no matter what steps I took. I left the doctor that day with a thought of what's the point of even going gluten free. I continued to eat gluten and eat and eat... But I got more sick and more sick. When I finally started to eat gluten free, I felt like I was more fatigued than I was before! It was a constant battle within myself that I am still dealing with. I'm fighting this war inside of myself to eat gluten free(which may I say is really expensive) or keep eating gluten and cope with being sick. I keep losing weight , and it's gotten worse lately. I actually got to a point there for a while where I would eat gluten and get sick 2-3 times per day. But now I get sick 2-3 times every single time I eat. I am depressed, lost and just plain have lost hope. Does anyone else ever have these feelings after your diagnosis ? 

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Hello Amberg,

Welcome to the forum! :)

First off, if you feel bad and you know you have celiac disease, than stop eating gluten now!  Like right now! Dang it! :)

You can't heal your body by continuing to poison it.  Celiac is an autoimmune disease and as long as you continue to eat gluten the immune system reaction will continue.  Even after you stop eating gluten it will take a while for the immune system to stop attacking your body.  Weeks or months possibly.  However, the sooner you start taking care of your body by not eating gluten, the sooner you will start the road to recovery.

Celiac disease can damage the lining of the small intestine which is functional in absorbing nutrients like vitamins and minerals and fats.  Those things are really helpful to your body when it is trying to heal damage, and also just walk around each day burning calories.  You can't feel well if you are basically starving each day while eating plenty of food.

And no, it is not useless trying to heal your gut.  Plenty of us had been sick for many years before diagnosis and going gluten-free.   And plenty of us feel 10 times better than we did before.

There is a Newbie 101 thread in the Coping With forum sub-section that might help getting started.  Personally I suggest eating mostly whole foods and not processed foods for the first 6 months.  If you need a bread substitute try Mission brand corn tortillas.  Your diet should be mainly meats, veggies, nuts. eggs. and some fruit.  Dairy is a problem for many people at first and would be best to avoid for a couple months.

Eating gluten-free is not more expensive than eating any other way if you stay away from the specialty gluten-free processed foods.  You can always add those things into your diet after 6 months when you are somewhat recovered and no what you are doing gluten-free diet wise.

You can get better Amber.  It may take a while and be a rough road to recovery, but it is worthwhile going down that road.

Edited by GFinDC

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I amgoing to second all that GFinDC stated. You can heal but you MUST go gluten free.  I was undiagnosed for well over 40 years and was severely impacted and I healed.  If you don't go gluten free you may find more and more of your bodies systems being impacted. Please do read the Newbie thread as there is a lot we have to do to stay safe.

Ask any questions you need to and I hope you heal quickly.

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You can go gluten free and it is NOT expensive.  I guess it could be if you buy gluten free junk food.  Eat whole, naturally gluten free foods like  rice, fish, meat, veggies, nuts, and fruit.   Add dairy later after you heal (and you can heal).  

 

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OP yup I feel that hopelessness too, especially when everything seems to be measured in weeks, months or even years in terms of how long it takes to see any tangible benefits from the diet change.

Also the other thing that is easily overlooked is how daunting this "raw foods" shift can be if you're not used to it. Convenience is a big thing in today's busy society and not everyone has time to prepare everything from scratch, which is where the packaged stuff comes in and yup it is expensive, no way around that fact. At least it's there I guess where in the past there may not have been anything at all.

My dietitian said the first 3 months are the worst as you do all the hard work for little gain, I'm still in that period and seeing all kinds of weird side effects so know exactly where you're coming from. 

The rebound in the first few weeks is the worst, see if you can make it through that and see where it goes from there...

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It is not hopeless, and really quite simple, Just change over to more veggies, and rice, at least you can still eat beans and rice. Keep up the eating the bad stuff and the damage will get worse and worse. I can not eat corn, dairy, soy, peanuts, olives, sesames seeds, and meats, rice, beans, fruits, sugars etc. all call discomfort now. The longer you put off the more the damage spreads and your immune system will start doing other bad things and lead to other diseases/complications. Stop eating gluten now while you can still eat a normal diet otherwise. -_- Trust me if I could go back in time I would have told myself earlier what I had and to stop, at least then I could make stuff like cheesy rice, and hamburger, bacon, chili, etc. Now days I even dream of simple dishes I can not eat now cause I did not catch it sooner.

Damage will heal, I myself and hoping it heals faster, I have been able to reintroduce a few foods this past year that used to bother me. I have more energy now then I did last year, and am starting to work out with weights again, and walking/biking a few hours a day. Still not going out and playing hardcore sports, but I hope I can get more active as I heal.  This community has done so much for me in helping me find ways to cope, find other issues, offer advice and moral support.

If you need recipes, sources for ingredients etc. many of us can help point you in the right direction, hell I just had a pizza binge week recreating different pizza related recipes (posting my findings on the site). -_- even a few I could not eat (Rice, pepperoni, and pizza sauce bowls topped with vegan mozzarella, and hemp Parmesan) and cooked for others as a gluten free chef side job.

gluten-free eating can be fun and creative, raw foods are easy and simple to combine just a few ingredients and your body will love you for the less processed junk.

As for any depression and anxiety, it comes in waves, and clears up a lot once off of gluten. You might find a few deficiencies caused by the damage that cause it to come up but once you figure it out you sorta end up finding supplements that fix that, I Found a few that help with my stress and help keep me upbeat and less depressed bout it. I found creating new stuff in the kitchen and talking about my issues here on the forums and calling a few close friends seems to help just to talk stuff out. Video games help to but tad limited on them now days due to nerve damage from celiac complications.

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5 hours ago, Amberg330 said:

I am depressed, lost and just plain have lost hope. Does anyone else ever have these feelings after your diagnosis ?

Yes! You're not alone in feeling this way. The good news is that it won't always be that way. You are yet to find out just how well you can become on a gluten free diet, it may be better than you ever thought possible. :)

Did you know that gluten can actually cause depression? So at least some of the way you're feeling at the moment could be a result of the gluten in your system. 

You need to eliminate it completely and this will require some tough choices. You've found a great site with lots of knowledgeable and helpful people who can offer advice and support.  Ultimately the committment has to come from you however, but it will be worth it if you can keep it up. 

My suggestion is that you keep a food diary and track what and when you eat and how you feel. Use the New Year as a time to make a new start and focus as above on whole foods. You owe it to yourself to find out just how far a healthy gluten-free diet can take you.

All the best!

 

 

 

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Welcome as the above posters said I concur stop eating gluten even if you don't feel better right away. On some level you know it's bad, but admitted you're overwhelmed and depressed. As the posters above states gluten is a huge contributing factor and let's face it even those without Celiac can find the holidays a tough time of year. You got a double whammy.

There are many related health reasons you will read about it that reinforce committing to remaining off gluten for life. As the holiday pass it will allow your  body to settle down, you will be able to allocate time to this commitment thrust upon you. There is relief in finally having your diagnosis,  take it all in, and accept it to move forward. While that is going on you will begin healing, the mood will lift, and physical energy too. This will be just a memory and an old post for you , out there to help another.

Good luck.

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