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Brand New Celiac Here With Tons Of Questions

excess weight gluten sensitivity celiac malnourishment malabsorption

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#16 rene83

 
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Posted 13 May 2013 - 06:46 AM

Welcome to the forum!  You are in the right place.  I can't tell you how much reading what these gluten warriors post has helped me out in my daily life.

 

1. Bone Pain--I've had this too.  In my ribs, my collarbone, my wrists, my femur, all at some point or another.  Like you, I thought I had cancer.  I've been gluten-free about 6 months and most of that pain has gone away.  Still have some crop up here and there but overall is much resolved.  I take 2,000 IU's of Vitamin D every morning and most practitioners I have spoke with have been comfortable with it.  The Vitamin D acts as a bridge that allows calcium to cross and attach to bone in order to increase your bone density.  My Vitamin D was 30.  

 

2. Weight gain--I gained weight and then lost a bunch of weight before diagnosis.  I've been thin all my life, gained 10-15 pounds at one point, and then shedded lbs all the way down to 137lbs.  I started eating 3,000 gluten-free calories per day to get it back up and I'm sitting around 162 right now.  From my learnings, some people have trouble gaining weight for obvious reasons and then some people have issues losing or keeping it off.  If you are trying to lose it.  Lessen your caffeine intake, increase your water intake, reduce your gluten-free carb intake, increase your protein intake--ALL IN MODERATION.  Don't get all fired up and take such a diet to extremes and don't expect instant results!  If you are still working out, be careful not to carb starve yourself.  WATER, WATER, WATER.  The protein will make you feel fuller, the water will help your body get rid of wastes and toxins, the carbs are what your body tries to pull from first for energy and if there isn't much of it there to be had it will draw from fat reserves and muscle thereby reducing your weight.  MODERATION.  Carbs can be good, your brain needs them and so do you to get though a work out but track them and get your daily value.

 

3. Restless Sleep--Please forgive me for saying this...  Reduce your caffeine intake.  It sounds crazy trick your body.  If you drink coffee switch to a half-caff blend.  So in the morning you still feel like you are getting your coffee but the caffeine will be half.  The first couple days you'll feel the difference but after that, you will adjust.  Don't do your workouts late in the evening and if you lay around eating before bed it will make you sleep light anyhow.  This one will take time to make better but it will.  You're stressed about all these new sensations, aches, foods, norms, and it will occassionally keep you up at night.  Come to peace with your new lifestyle, don't be scared of some of the new aches, many of them will go away on their own when you least expect it.  Mine did.

 

4.  Extreme fatigue--Read number 3.  It certainly will not solve it but will get you headed on a better trajectory.  I went through this as well.  My issue was too much stress, too much caffeine during the day, and some anxiety/depression.  It's natural.  I made it through it.  I do not recommend over the counter sleep aids.  I did take a little melatonin at a low dose for no longer than probably a week when my sleeplessness was it its work.  Its over the counter but I made my doctor approve it and I recommend you do the same.

 

As for alcohol, caffeine, and not getting enough food/water...  These can all affect your bone density adversely.  Limit the caffeine.  As for the alcohol, your liver is probably already trying to repair itself and your body.  When you consume alcohol it has to work overtime on breaking down that alcohol which leaves it less time to heal itself, your body, and you.  Water helps it do its job.  Water will help reduce inflammation by flushing out toxins in your blood that cause inflammation.  

 

You're going to have some trial and error.  Find what works for you.  Don't walk around all day freaked out about your health like I did.  Eat gluten free, enjoy your day, enjoy your friends, thank God that you figured this thing out, and you'll do great!

 

PS--these are all things that worked for me.  To be safe you should run it all by your dietician or doctor to make sure it matches up with your needs.

Thanks for the tips. I am quite sensitive to caffeine so I don't drink any caffeine containing beverages after noon. I also am drinking my normal 120 ounces of water a day :)

 

I am 10 days into my gluten free and I am hoping the withdrawal symptoms go away in the next couple of days, the exhaustion is almost more than I can bear and the moodiness is horrid!! As for my restless sleep my dr explained this is because I am not absorbing any amino acids so I can't make neurotransmitters essential for sleep (this was confirmed with a NT test where I had like nothing other than a stress NT, can't remember the name of it. Sheesh I am not even producing cortisol anymore bc of my malnutrition).

 

 

Is it normal to be scared out of your mind that you are getting small amounts of gluten unknowingly while you are initially gluten free? I am petrified right now, but I know that if that were the case my withdrawal symptoms would most likely cease and I would get to start from square one all over again. 

 

I am hoping to feel better soon, right now I feel like absolute garbage and am not a happy camper. Thank you all once again for your support. 


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#17 GFinDC

 
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Posted 13 May 2013 - 02:24 PM

HI Rene,

 

I was pretty paranoid about gluten early in the diet.  I think that can be helpful actually as there are lots of new things to learn and new habits to learn.  Like reading labels every time, and being aware of CC possibilities.  It's ok to be little concerned about your health after all, when you have a chronic incurable disease.  But celiac is probably the best chronic incurable disease out there too.  We got a winner disease! :)


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#18 rene83

 
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Posted 13 May 2013 - 03:15 PM

Ooh I have some questions that I just realized. So Ia ms hopping at a local market in the gluten free area and then across I see some times that are gluten free  "however" it has the warning "Processed on machinery that processes wheat, soy...". Now let me back up a minute, I also have SEVERE allergies (anaphylaxis) to shellfish and mushrooms and an intolerance to soy (not lecithin weirdly enough and I can tolerate soy sauce in small amount, that will have to be gluten free now lol) but how big of a concern is cross contamination?

 

I am sorry I feel stupid asking this, but while shellfish can kill me in minutes, wheat won't, however wheat has been starving me slowly to death so in a sense it is life threatening, esp for a celiac.

 

Anyways I would love your experiences with eating things that could have been cross contaminated, things that have been and so on. I am trying to figure out how safe it really is (I know this is a HUGE danger in restaurants) for me to eat something that could have possibly been cross contaminated.  As always thank you so much for your guidance and support!!!!


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#19 eers03

 
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Posted 17 May 2013 - 06:12 PM

Thanks for the tips. I am quite sensitive to caffeine so I don't drink any caffeine containing beverages after noon. I also am drinking my normal 120 ounces of water a day :)

 

I am 10 days into my gluten free and I am hoping the withdrawal symptoms go away in the next couple of days, the exhaustion is almost more than I can bear and the moodiness is horrid!! As for my restless sleep my dr explained this is because I am not absorbing any amino acids so I can't make neurotransmitters essential for sleep (this was confirmed with a NT test where I had like nothing other than a stress NT, can't remember the name of it. Sheesh I am not even producing cortisol anymore bc of my malnutrition).

 

 

Is it normal to be scared out of your mind that you are getting small amounts of gluten unknowingly while you are initially gluten free? I am petrified right now, but I know that if that were the case my withdrawal symptoms would most likely cease and I would get to start from square one all over again. 

 

I am hoping to feel better soon, right now I feel like absolute garbage and am not a happy camper. Thank you all once again for your support. 

It is absolutely normal to be paranoid about getting glutened!  Especially early on.  I have relaxed a little because I can only do so much.  I'm going to slip here or there and I just have to make sure to do my best not to let my guard down and consume it on accident.  I had a particularly difficult sleeping early on as well.  I'm not exactly a sound sleeper yet but its much improved.  It takes a LONG time.  You'll get there though.


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Diagnosis 11/2012

#20 rene83

 
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Posted 21 May 2013 - 01:36 PM

Just an update, I am almost 3 weeks in and have never felt worse in my life. The emotionalness, the break outs, the GI craziness, the extreme fatigue, the brain fog. Holy crud I just want to go back to eating gluten just to feel normal. I am MISERABLE. My dr said it would only last 11-14 days and each day I am feeling worse. To boot I haven't been able to sleep at all the past 3 days and have been quite weak and faint. I feel like I am never going to feel better.  :(

 

I am still really worried about cross contamination and if there is a threshold for what it takes to be "glutened". I am avoiding eating out at every cost but I am really curious about those items such as nuts lets say that have the "this was processed in a place that shares machinery with wheat" stuff..... 


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#21 itsmebiancap

 
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Posted 10 March 2014 - 07:15 AM

The comment I made in regards to Pepsi products being gluten free was in an article I read online by a celiac journalist. She pointed out that she has celiac disease and has never had a problem at Starbucks however when she contacted the corporation Starbucks informed her that they wouldn't recommend buying (in store) any of their products because they cannot garuntee it because of cross contamination. But they would recommend instead using drinking their bottle coffee because that is gluten free.

 

**I think I spelled garuntee wrong..  


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#22 itsmebiancap

 
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Posted 10 March 2014 - 07:20 AM

Also, I would have to say in regards to not sleeping well. I do drink caffeine usually through coffee. Rarely soda. I usually don't drink it past 4/5pm. However I still have trouble sleeping. I find that being gluten free usually gives me many restless nights. I get a small window of being tired. If I don't fall asleep in that window which is usually around 7pm (way too early for bed) I can't fall asleep until 11p/12am. I read alot of articles saying many people with a gluten intolerance/sensitivity/celiac disease have sleep problems. If there is any advice you can give me to stop me from being so alert and resting I would love to take it itoo!


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#23 itsmebiancap

 
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Posted 10 March 2014 - 07:28 AM

That I think is pretty normal. I went through that too then it switched and I went to high energy no brain fog and super happy always. :) Cross contamination will happen with more allergies to look out for I would say be careful. Gluten cross contamination triggers you differently each time and affects your body differently I think. Sometimes I would become like narcoleptic other times I would have pangs in my stomache or a headache or nothing. I would just ask them (when dining out) to cook my food seperately due to high allergies (pretty sure you already do). The problem with cross contamination is that you don't know how much risk it imposes sometimes none others much. However the more you cut out the more expensive this allergy free lifestyle becomes. The products you use most often make sure they are all allergy the ones you use on occasion buy whatever is most economical that doesn't pose much of a threat. Thats what I do and usually it pays off. Its only so much you can avoid because after a while it will become burdensome. I hope this helps.

Just an update, I am almost 3 weeks in and have never felt worse in my life. The emotionalness, the break outs, the GI craziness, the extreme fatigue, the brain fog. Holy crud I just want to go back to eating gluten just to feel normal. I am MISERABLE. My dr said it would only last 11-14 days and each day I am feeling worse. To boot I haven't been able to sleep at all the past 3 days and have been quite weak and faint. I feel like I am never going to feel better.  :(

 

I am still really worried about cross contamination and if there is a threshold for what it takes to be "glutened". I am avoiding eating out at every cost but I am really curious about those items such as nuts lets say that have the "this was processed in a place that shares machinery with wheat" stuff..... 


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#24 1desperateladysaved

 
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Posted 10 March 2014 - 12:02 PM

Hmm, m y lowest lows were often followed by higher highs.  I hope you will be marveling at similar things soon.  Keep up the good work, you are getting somewhere!

 

D


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#25 kareng

 
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Posted 10 March 2014 - 04:36 PM

The comment I made in regards to Pepsi products being gluten free was in an article I read online by a celiac journalist. She pointed out that she has celiac d

 

 

What comment?  You are  the first response on this thread since May of last year? Were you responding to a current thread?   Did you get lost?   :D


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#26 itsmebiancap

 
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Posted 10 March 2014 - 04:58 PM

Yikes! Your right. It was on the first page. Can't reply to specific post via my cell.
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#27 kareng

 
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Posted 10 March 2014 - 04:59 PM

Oh!  I see!  You did make a comment back in May!  Sorry.  Its just an old conversation so I thought maybe you meant to reply to a new topic with a similar title.


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#28 itsmebiancap

 
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Posted 11 March 2014 - 06:35 AM

No, I didn't read the date thats why.. lol! 

Oh!  I see!  You did make a comment back in May!  Sorry.  Its just an old conversation so I thought maybe you meant to reply to a new topic with a similar title.


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