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9 Months Gluten-Free, Felt Better But It Is Getting Worse Again. Help?
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Hey guys,

 

After having coped with celiacs without a support network since birth I figured it is time to get involved in a community. Help others and get some help myself.

I want to keep this brief, but I guess some background history is in order. Had celiacs since 2, cheated diet form age 13-22. Now at 25 I feel like a ghost. Born and raised in Norway in a small town that is a bit "rough" where drugs is very common and most people touch upon it. Been in canada to study a year (after 6 months of sick leave due to gluten issues). Got tons of neurological issues (slurred speech, vision, muscle weakness and loss, problem with cognitive abilities, brain fog, suicidal, chronic anxiety and depression++) in canada and barely made it though the study with the help of marry jay. My celiacs sensitivity is extreme sensitive and I can't take the smallest amount. (the problem was I never directly felt affected by it until it got really out of control, and I started using weed as a substitue to cope with it. Which lead to more eating of what I could not. Downward spiral goes on).

I have now been 9 months solid gluten free where I eat whole foods, clean protein like chicken, skinny beef (no red beefs), fish, etc and lots of fruits/berries/smoothies. Treated myself to a coffee every once in a while, and minimized the sugar intake to almost nothing (a bender here and there with a pack of cookies or gluten-free chocolate).

Weighting at about 56kg (lost about 7kg in 1-2 months) I managed to climb to 60-60.5 where I currently am, which is still little for a 180cm male. Lately I have started to feel more and more sick. My sleep has always been bad, but lately it has gotten worse. Wake up after 8-10 hours, woken up 3-10 times a night, feel like a zombie. Constant head pressure and sinus pains, had diarrhea two-three weeks straight, hard time concentrating on anything constructively and just feel like a lost puppy. Supposed to search for a job, but with depression and all the other stuff going on I can't force myself to get going and end up just doing nothing all day every day.

My food intake has not really changed other than including some green tea, skipped broccoli and some other foods that gave me nuclear gass... 

Is it really going to take another year to recover? Don't know how much longer I can put up with this :/

Guess I'm just looking for a pat on the back... even writing this makes me feel a bit stupid. "It's all in your head" type of feeling. Just wondering how I can improve the situation. I'm trying to work out 3 times a week, but after 2 weeks I I gradually just felt so fatigued that I have had to take a week off just to get out of bed.

Cheers,
J

Getting a bit long, but I feel like adding something.
My friend has a birthday today... and some of my buds are pushing me to come. We discussed it earlier today. So I bought some vodka (haven't had a drink in a long time) and had two small drinks just to get a bit more extroverted before heading up. An hour or two passed and now I feel total garbage. Nauseous, out of body, numb and weird. Just want to go to bed. Obviously none of my friends understand it and usually just laugh and call me a weakling, or pu$$* if I bring something like that up, or that I don't feel like drinking. Doesn't really help to boost the already deprived mind, and makes me feel even worse. What should I do? In canada I had amazing support from newly formed friendship with class mates and people elsewhere. They were all kind, supporting and helpful. Understanding and just ... there for you. My heart is stuck there and I can't start living again. Feel like a lost soul.

Edited by JamieRmusic
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Aww w. So sorry you are going through this. I've only been diagnosed recently, so I have no science to help with. But I come from a town like yours and I think it must be so are to stay on this diet as a young person. Don't drink anymore. You have too much going on. Find new friends if yours tease you. And maybe look for a doctor that specializes in celiac neuro issues. Stay strong and take care of yourself first. Good luck.

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Hey Jamie,

 

Get well soon  ***

 

I have used supplements to help bring my nutrient levels up.  The damage to your intestine makes it hard to get enough nutrients without them.  I used food intolerance tests, and record keeping to determine what foods to avoid.  There are many things you can do (even just time) to feel better.  Please don't give up.

 

Diana

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Hi J,

 

You are not a wuss or being lazy.  Your body is starving for nutrients and not able to work properly without them.  If my metric conversion is right, you are in the range of 5 ft 10 inches and weigh about 132 lbs.  That is way low for a male your size.  It seems whatever you are doing diet wise is not working, or you have another problem going on.  Are you having diahrea often or vomiting?  You are probably 30 to 40 lbs underweight.  If you haven't been to the doctor recently you should probably pay them a visit.  There are a few cases of refractory celiac disease where the immune reaction never stops, even on the gluten-free diet.  Those are pretty rare though.  More often people need to really clean up their gluten-free diet and be sure they are not eating cross contaminated foods.  I agree you shouldn't be drinking in  your condition.  Alcohol is hard on the digestive system and that's not good for you right now.  Your friends don't have to live with your condition so they are not good judges of your activities.  Plus they sound like real hose heads! :)  You need to put your health first and not your friends.  If they really are friends they will understand your needs.  Or at least tolerate them.

 

Have you tried taking probiotics and digestive enzymes?   There are times when people develop additional food intolerances beyond gluten also.  Have you noticed patterns of symptoms after eating nightshades (peppers, potatoes, tomatoes, eggplant) or other common problem foods, like the top 8 food allergens?

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Welcome Jamie!!!

 

You are not stupid, a wuss or being lazy -- you are actively eating good food to heal your damaged digestive system.

 

I too had some improvement during my first months gluten-free -- unfortunately I had to remove much more than gluten to encourage healing in my body.

 

Are you keeping a food/symptom journal -- it is the first and best step to finding any other problematic for you.

 

Hang in there -- healing can be a slow process -- but it does happen :)

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Thanks guys, really appreciate all the kind words.

Will try to get in contact with some people I haven't been around in a long time that are great.

I got a quick appointment at the hospital yesterday after seeing my dietician the day before, and ended up taking a gastroscopy yesterday.  Will get results in two weeks!

Nikki: Thanks! I have gotten in contact with a great doctor at a more small local hospital in Oslo that focuses on celiacs only. He knows his stuff and we will have a new consultation in may to talk about my gastro. 
 

1desperateladysaved: May I ask what type of food tests you used? That was a good idea to add to the food journal. When experimenting with new types of food use a test at the end of a week or two period. Thanks!

GFinDC: Thanks, I'm curious when you mention probiotics and digestive enzymes. Are there any specific you have in mind? I'm a bit skeptical to use "medication" these days as not every company brand gluten properly. I will look into it, but have to figure out whats safe I guess.

 

GottaSkii: Thanks! Will try to keep a journal for sure. Goes hand in hand with work out so why not.

Once again you guys don't know how much I appreciate the words. 

Thanks!

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I think that I have been where you are.  I can understand the downward spiral and substance abuse.  I needed a lot of discipline to recover from this illness.  I am very sensitive and it took a lot of discipline to arrive at a safe diet.  I had to keep that food symptom journal and track everything and be really careful about not adding too many things at once.  I had to be really careful about alcohol consumption.  That really confuses the whole process.  It is easy to lose sight of the prize and eat something that you shouldn't.  When that happens it provides evidence that you do need to exercise all the caution and you start over.

 

It is important to keep the goal in sight.  I went from barely being able to get out of bed, to not being able to run around the block, to being able to run a 5K, to being able to do a mini marathon etc.  It gets better and better.  It is gradual and takes constant vigilance, especially when more sensitive than typical.

 

To most easily arrive at a safe diet, it is best to keep things simple.  I kept to produce, unprocessed meats, and whole grains which I sort and wash before consuming.  Try not to change too many things at once or you won't know the source of whatever is going on.  I try to keep things to one change per week.  More details about particular foods items are probably best kept to pms or the super sensitive section.

 

Best wishes and I hope things improve for you soon.

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Hi Jamie,

 

Solgar is good brand and labels their products with the gluten-free and other allergens status.  Vitamin Shoppe is good too.  Nature Made is another one.  BlueBoonet is fine also.

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Jamie, I'm so glad to hear you're seeing a doctor and doing better from your first post. I really relate to your story and a young man with Celiacs. I just sent you a PM. Maybe we can get in contact.

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hey, j - i drink some kefir - about 8 oz a day.  the brand i use is 99% lactose free.  seems to help with digestion and it's got alot of protein. or i will eat some greek yogurt.  that way it's a two-fer:  i get the extra protein i need to hopefully gain some more weight and some nice flora for my digestive tract.  and it tastes like blueberries  :)  three-fer!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
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