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Dealing With The Emotional Aspects Of Ai Disease
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It feels like we talk a lot on here about dealing with the physical aspects of celiac, but I'm curious as to how you all deal with the emotional aspects? Lately, it's really been hitting me deeply with the realization that i'm going to have to deal with this every day for the rest of my life, and that sometimes, even though I seem to be doing everything right, my body still gets angry. Today, I really wanted to talk to my mom (about what, exactly…I don't know. Just to say that it's hard dealing with this, I guess?) but I stopped myself because I knew she wouldn't understand. I'm only 25 and sometimes I'm just so tired, physically and emotionally. How can I even think about moving forward, getting married, having children, all of those things, when I can barely keep my body functioning in a normal way for more than a week or two at a time?

 

 Sometimes I just feel so angry that I've lost years of what should have been good, healthy living to illness and that I have to deal with this now, at such a young age. I haven't been as sick as some, but I also haven't been healthy for a long time. Sometimes it feels like I am getting better and better and then boom…back down the ladder.

 

In a post I made a while back, somebody recommended a mindfulness technique, which has been helpful. I try to write in a journal to organize my thoughts and feelings. 

 

How do you deal with your emotions? I hope this isn't too weepy, weepy, cue the violins! It's just been stressful lately with my job and my health. 

 

Thanks for letting me vent. (Thank you for letting me have  a little pity party. Trying to move on now.)  :)

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I can't really offer any advice as I'm still learning to deal with it all but I know what you mean about the ups and downs. And I can't even work out why they happen. What was the mindfulness technique? The novelty is wearing off and the 'rest of your life' is weighing on my mind a bit. I don't miss actual gluten products at all, but at the moment I hate being different at the moment, especially at such a food-orientated time of year. Also there are certain 'rituals' that involved gluten in my life that are no longer - me and my Dad's 'thing' was to go out on our motorbikes and stop somewhere for Guinness by the river. I know I can probably have cider or something instead and in the scheme of things it's really minor but it was always Guinness and it still makes me sad. 

I sympathize with your worries about the future. I'm 22 and in my final year of university and planning to do a PhD next, so ordinarily I'd be looking for a flatshare but I just can't face the thought of moving in with strangers and dealing with another shared kitchen, so my plans are changing because of it, and that will knock onto my social life and finances.

 

This weekend my boyfriend and I were chatting about holidays next year - previously we've stayed in hostels around Europe and getting food from the market plays a big role in that. Watching his little face fall as he realised that that would be a lot more complicated/not a part of our holiday was horrible :( 

 

These things are all minor but when you add them up 'for life' they get me down. And yeah then there's what seems like the battle to keep yourself healthy/healthier FOR EVER! Gah. Jeez body I looked after you as well as I knew how for twenty years, just behave! I hate the times where I have a run of good days and then for no obvious reason a few bad ones - I feel like I can't tell people I'm feeling bad if I can't explain why... And I feel like my friends and family have listened plenty to me talk about the physical side so asking them to listen to these little worries is unfair. 

Sorry for crashing your post! /endpityparty!

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Not at all, thank you so much for the response! There's an open door to my pity party. Please, pull up a chair. :D  It makes me feel less alone. It's hard. Even when you have a partner, they still don't *quite* get it all the way. I've not been home yet for the holidays with celiac, but I am trying to imagine how it will be when I go visit in April. My family has always enjoyed going out to dinner together, and now that is going to be very difficult for me, and I'm not sure they will understand. And I hear you on the finances/social aspects of dealing. I used to think I could live my life adventuring about, the way that I have for the past few years, but now I crave food safety, and that's really difficult to get when you are hopping from hostel to hostel in who-knows-where. Lol, "Geeze body…just behave!" That is too funny, and it's exactly how I feel too. Before celiac, I was always SO FRUSTRATED because I was ill, so I ate organic, exercised, drank clean water, did yoga, and recycled, darn it (!) and I was still sick. Now I know why, but I wish my body would stop acting like a jerk! Haha. Thanks for coming to my party. I hope you enjoyed your time here. Lol.  :P

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Hi Guys, I'm coming to the Party  :D

 

Bellvie, I'm glad you enjoy the Mindfulness technique.  It can diffuse an emotional situation quickly too.  

 

You guys are young and you will get this all under control.  You can still socialize, travel, have fun with friends but you now need to do it with food safety in mind.  Carry snacks/food with you all the time so you can pop in that coffee shop with friends and enjoy yourselves.  You need to get this new lifestyle nailed down, then it won't be such a hardship on you, it will be second nature.  KCG, it is possible to live with gluten eating roommates.  It is difficult to get it working smoothly but it may be worth it for your sanity.  We can help you get that all sorted out if the time comes.

 

There are so many reasons to keep your body very healthy from now on.  As your lives evolve you may encounter sickness, broken bones, diseases and the like.  You must stay strong and healthy to recover from these things.  In your generation there will be so many more improvements with gluten free foods and a focus on cc so I do believe it will get safer for you to enjoy restaurants.

 

Consistent exercise will keep your endorphins sailing.

 

Don't be sad guys, this is the beginning of a long healthy life and you are only going over a speed bump  :D

 

KCG, here is some information on Mindfulness for you. 

http://www.mindfulness.com/

http://en.wikipedia.org/wiki/Mindfulness_(psychology)

 

Colleen

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Aw gee, thanks Colleen. :) I could not remember who had recommended that to me, but it has helped, especially when I start to have my freak outs at work! Exercise is something I'd like to get involved with again, but it's been unrealistic this year with my health and my job. (I work from 9 to 6:30 with no breaks..eek…so I'm very, very tired when I get home.)

 

And I need to get more snacks!! Speaking of which...

 

please help yourselves to my homemade gingerbread men right here on the table. Hey, if we're having a pity party, we might as well eat some good food! lol.  

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Hey Bells, how is your gluten-free diet going?  Are you still having severe symptoms?  I forget when you started, my brain is forever stuck in the fog  :lol: With that much working I think your good on the exercise for now.  

 

I'll just stuff my pockets with those gingerbread men  :D

 

Colleen

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I can't say that I've mastered this in the 9 months or so since my diagnosis, but for the most part, Celiac is just a thing that I have to deal with.  I'm a lot older than you, and I imagine that if I had another 50 - 60 years ahead of me to feel like I'm ALWAYS going to have to deal with this, it might get me extra down.  

 

But, what helps me are a few things - the first is the belief (right or wrong) that maybe in 5 - 10 years they will come up with a solution for this that will allow me to have a few favorite foods again.  Kind of like that alcoholic's "One Day at a Time". Another thing is the realization that fun and social life doesn't have to be about food.  Now, I've always been heavy, and I've clearly loved my meals, so this is a big realization for me. These last few months, if I don't feel safe, I just sit with my friends and have a glass of wine, and eat at home later, or munch on a KIND bar on my way out.  I agree that the travelling will be tough - I'm just about to start again - and I will miss being able to eat local specialties, but the alternative -- feeling as crappy as I did before my dx - is much, much worse.

 

Good luck!

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It feels like we talk a lot on here about dealing with the physical aspects of celiac, but I'm curious as to how you all deal with the emotional aspects? Lately, it's really been hitting me deeply with the realization that i'm going to have to deal with this every day for the rest of my life, and that sometimes, even though I seem to be doing everything right, my body still gets angry. Today, I really wanted to talk to my mom (about what, exactly…I don't know. Just to say that it's hard dealing with this, I guess?) but I stopped myself because I knew she wouldn't understand. I'm only 25 and sometimes I'm just so tired, physically and emotionally. How can I even think about moving forward, getting married, having children, all of those things, when I can barely keep my body functioning in a normal way for more than a week or two at a time?

 

 Sometimes I just feel so angry that I've lost years of what should have been good, healthy living to illness and that I have to deal with this now, at such a young age. I haven't been as sick as some, but I also haven't been healthy for a long time. Sometimes it feels like I am getting better and better and then boom…back down the ladder.

 

In a post I made a while back, somebody recommended a mindfulness technique, which has been helpful. I try to write in a journal to organize my thoughts and feelings. 

 

How do you deal with your emotions? I hope this isn't too weepy, weepy, cue the violins! It's just been stressful lately with my job and my health. 

 

Thanks for letting me vent. (Thank you for letting me have  a little pity party. Trying to move on now.)  :)

 

Oh Belle,

I have wanted to post something similar for days (pulling up a chair now) but didn't want to seem like the debbie downer. Great to know that I'm not the only one who sheds a tear occasionally regarding this. I am young as well...ripe ole age of 23. Things were great relationship wise until this appeared. Granted I never felt well, but I can put up a pretty good mask. Shopping and cooking were easy. There were never arguments about food... EVER.

 

Last night I was going to make some amazing spaghetti and meat sauce with quinoa noodles. I let my roommates know that I was going to make dinner and was told, "If it has gluten-free noodles, I am not eating it." They didn't mean it in a "this is gross" type of way but more of a "you have to eat those kind of noodles, we don't want to take that away from you." I already feel like an inconvenience to the rest of the world and now inside my home. I know it is an adjustment for everyone in my life, not just myself...but it sure isn't easy. I notice my blood sugar dropping more rapidly than I used to and because it's all an adjustment, I don't like how I feel just yet. It's better but certainly different. It makes me crazy emotional, I just want to feel better and not feel left out!

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Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

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Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

This is one of the best posts in a long time!  I know everyone is entitled to their pity party when first diagnosed but Celiac is not something to worry about or fret that you'll be dealing with this everyday for the rest of your life.  It's just food and there is plenty of great gluten-free food out there so no one should feel deprived.  This from a certified foodie. Take it from someone who has been gluten-free almost 9 years......it becomes second nature and you won't even think about it down the road.  You will go on to live a perfectly normal life like everyone else and be happy.  If I can make a recovery at the age of 46 when diagnosed, anyone can. I am now 54 and work a full time job, have a long commute and exercise regularly in the gym twice a week. Do you think no one but a Celiac feels tired from time to time?  Lots of people struggle with a chronic illness and do fine. Much of it comes from the right attitude and I know once you get through the grieving process, you'll come out good on the other side.

 

Keep  calm and carry on, people........ :)

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Well, I don't know if this will help or not.  I'm also older than you, and when I was diagnosed in August my survival instinct kicked in, and my first thought was "it could always be worse, and thank God I can make it better".  I was on vacation when I got the call, so it was quite an adjustment in an instant.  I'm still dealing with digestive issues, so that's what's bugging me more than anything.  You have your whole life ahead of you!  You have the chance now to live a very healthy, active life now that you know what the problem is.  Don't look back!  Look forward!  You can still eat what you like (with adjustments that you'll figure out), and do what you love.  Remember, you'll be feeling good now when you do these things.  It takes planning and organization, and I'm still struggling with that.  Go on that trip with your dad, and take gluten-free beer with you.  Plan, plan, plan and live, live, live!  The best of luck to you!!

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*scoffs multiple gingerbread men* 

Colleen, thank you for the mindfulness info. I had heard of it before but couldn't remember the details. And you're very right about exercise too - I've always been active but got my diagnosis in the same month that I completed my first marathon and then, partly because I felt miserable and partly because I was so fed up with the D while running, I let the exercise slide. Today I've run 10k then had a sports massage = happy girl. 

 

bburmeister I know what you mean about feeling left out unintentionally, especially living in a shared place with people you're close to, but not 'family' close (i.e. they don't have to put up with you unconditionally ;) ) I feel that it's especially bad as we'd been living together for 18mnths before I was diagnosed and now I have to explain the changes to them as well as dealing with it myself. I suppose it might actually be easier going into a new flat after uni and getting it straight first off. 

Everyone's right though about the positive side being better health - honestly, my main feeling towards this is gratefulness and relief that I was diagnosed only a few years after seeing signs, unlike some. I'll be back to re-read the advice on this thread over the coming months though :) - right now I'm off to investigate collapsible cooking equipment because it looks like I'll be getting cosy with self catering hostels on my hols! 

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(throws self on floor)  i would LOVE a gingerbread cookie!  one that i didn't have to fingerprint or hover over for fear of ("O MY GOSH don't use that spoon!!) someone contaminating it  :(  it's been a rough week (ok, month) for me.  i have had house guests pretty steadily for about 2 months (with little breaks in between) and for about a month of that time i have been down from 2 gluten hits.  talk about these people i love coming hundreds of miles to visit me and all i want to do is sleep.  and the meals?  forget about it:  stress, stress, stress stress stress.  why do they make the person who can't eat normal things in charge of the meals??  i was like:  eat what you want, i'll eat whatever.  i don't care if it's a turkey damn sandwich for every meal; anything is better than 14 people staring at you waiting for a response.  i am so upset by this whole run of visits, i'm seriously considering going away next year by myself.  i honestly felt like such a burden - we have had this thanksgiving tradition (at our house) for 17 years and i am ready to break it.  kkkkkkkkkkk.  deep breath........

 

then some sweet soul posts this:

 

Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

 

and it's just what i needed.  and that cookie  :)  thanx, guys, you're all awesome :)

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I would like to join this party, too. And eat gingerbread. Because gingerbread is one of the most wonderful foods to eat, especially in the holiday season. :)

 

Yesterday I got the news that my resting metabolic rate (RMR) is extremely low. It sent me over the edge. I started a full blown pity party for myself. You see, I work out, I eat for fueling my body for the most part. I spend on average 8 hours in the gym per week. I know I talk about it a lot, but it's my passion and my hobby so I'm sorry if it bugs anyone.

 

When I was diagnosed it was a relief to know that finally I had a reason for stagnant progress. But I am impatient. I know I'm impatient. I want results like yesterday. And with my RMR being 800 kcals it means I have to work even harder to get to my goals. Should I even be worried about this right now? No, not at all. But what else bothers me about this result... (gotten by Sac State by indirect calorimetry btw) is that I worry it's my thyroid. So now on top of having 3 knee surgeries, having celiac disease, now I potentially have thyroid illness. So my next plan is to get a thyroid screen. My last test was March 2012 and my TSH and FreeT4 were normal. But thyroid illness runs in my family and we all know how its linked to celiac disease.

 

So here I am. Worried again. I'm sick and tired of being sick and tired!

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Yesterday I got the news that my resting metabolic rate (RMR) is extremely low. It sent me over the edge. I started a full blown pity party for myself. You see, I work out, I eat for fueling my body for the most part. I spend on average 8 hours in the gym per week. I know I talk about it a lot, but it's my passion and my hobby so I'm sorry if it bugs anyone.

 

Do not apologise for talking about your exercise! (lifting isn't it?) I like it - certain people around me seem to think that exercise 'caused' Coeliac *bangs head against wall* and then I feel that I'm being irresponsible by continuing with it. So it's great to hear someone else focusing on it to get through the changes. Out of interest, what is RMR? 

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Do not apologise for talking about your exercise! (lifting isn't it?) I like it - certain people around me seem to think that exercise 'caused' Coeliac *bangs head against wall* and then I feel that I'm being irresponsible by continuing with it. So it's great to hear someone else focusing on it to get through the changes. Out of interest, what is RMR? 

 

In simple terms, RMR is the resting metabolic rate. What that means is this is the amount of calories it takes to keep your body functioning if you were in a coma. Just running your organs and being alive. It's about 70% of your calorie expenditure. If I calculated my RMR based on my age, height, sex and activity level it should be 1400-1500 kcals. It was measured at 800kcals. It was devastating.

My rationale for this test result is this: a) The lack of absorption from my gut made my metabolism slow down B) Thyroid illness or c) combination of both.

 

My plan to tackle this issue: 1) Keep doing what I'm doing for exercise 2) build more muscle 3) Eat small meals frequently (already do this) 4) Go to doctor to get thyroid screened (sent appointment request already). 5) Let my body heal and try not to worry so much about it (this is the hardest part for me) :o

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I had a massive pity party after I was diagnosed. It lasted until I woke up the next morning and realized that it was literally do or die and I had to get my act together. I spent a whole weekend researching, and hit the ground (or diet or whatever) running the next week. I wasn't really prepared for how messed up I would be for things like the first time I smelled KFC, or weeping with my forehead against the bakery glass doors of the donuts in the grocery store knowing I would literally never have a donut again for as long as I live. It was those moments that the whole "as long as you live" thing really started to hit me.

 

Eventually I put on my big girl pants. I learned to make fried chicken. I make my own donuts. (Not those stupid cake donuts like we can all buy frozen. True, wonderful, yeast risen donuts!) I'm in a world of two additional food restrictions now. Which aren't just "a food" but are each an amino acid so each is a whole class of foods. And still, when someone asks what I can eat, my response is generally "whatever I want!"

 

I do honestly still have my days. And I'm not above a pity party. I'll have a day where it just gets me down and I'll just let myself be down about it for a while, have a good all out cry, get it out and move on. The thing that honestly wears on me more than anything is living with WEs. I try for the sake of newbies to be all "oh it's fine, it can be done blah blah blah" and no biggie. But I am constantly on edge. I'm always worried. Always paranoid. Did I clean that well enough? Did someone touch something? Did I remember to wash my hands after I touched that? It is so nerve racking that I honestly can't wait to not live here any more. My husband understands and we'll have a strict 99% gluten free house when it's just us with a no outside food that we didn't get policy. The exercise thing can get me down too. I try to use my elliptical every day, but I'm just still so messed up that it's a challenge. I know I need to push, but it's hard to find that balance between pushing hard enough and too hard.

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You know, I have forgotten about how emotional I was at first. I tell you this not to brag, but to let you know that it's temporary. I honestly NEVER feel sorry for myself anymore.

 

Oh I did at first! I cried and I ranted. I avoided the grocery store and I avoided eating with my friends. I threw back my head and shouted to the skies.

 

And then I got used to it. Now I shop at the grocery store and laugh with my friends who work there. I go to restaurants with friends and just drink coffee while they eat, but I enjoy their company. I go to dinner at friends houses, but I bring my own food and nobody thinks a thing of it. I feel GOOD - too good to even think about how hard this was at first.

 

And given time, you will too. In the meantime, threads like this are theraputic. Get the emotions out. Share them with folks who know exactly what you're going through. This is the best support group in the world. And in another few months, you will be giving that support to other newbies who are feeling down.

 

Great big ((((((HUGS)))))) to all of you who are having a hard time right now, and great big (((((HUGS))))) to all of the long-time members who held ME up when I needed it.

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Please forgive me for lurking outside the door of your pity-party and eavesdropping... the mention of possible Thyroid issues forced me out of the shadows.  I don't know if you guys are into vitamins - some people believe in them, some don't.  They have helped me tremendously and I credit them for my normal blood panel even while Celiac and my so-far speedy recovery.

 

Anyhow.... (got that out of the way - if you're still reading, I'm assuming you're open to vitamins/supplements)

 

I started getting potential Thyroid issue symptoms some months back - forget how long ago now - and also started getting the pre-menapausal hormonal weirdness crap - which I know messes with your Thyroid, and when your Thyroid is unhappy it can make your Adrenal glands unhappy.  So I started taking a Thyroid Support supplement along with an Adrenal supplement and my Thyroid symptom went away, my energy improved, and my pre-menapausal crap tamed down - didn't go away, but got much better.

 

If you're interested, these are the ones I take:

Gaia Thyroid Support:  http://www.vitaminshoppe.com/p/gaia-herbs-thyroid-support-120-veggie-caps/gh-1153

Natural Sources, All Adrenal: http://www.vitaminshoppe.com/p/natural-sources-all-adrenal-165-mg-60-capsules/nz-1001

(or if the adrenal tissue idea turns you off, Gaia also makes an Adrenal Health supplement)

 

<backing back out the door of the pity party... hoping no one minds that I snuck a gingerbread cookie...>

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Anything metabolic is thyroid related.  If you are working out that much and eating small meals often (which helps to boost metabolism, as you already know), and that isn't helping, have your thyroid screened with a FULL THYROID PANEL.  That could be key to your problems.

 

I don't mind your talk of exercise.  I love weight training and it's good to hear what other people do!

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Please forgive me for lurking outside the door of your pity-party and eavesdropping... the mention of possible Thyroid issues forced me out of the shadows.  I don't know if you guys are into vitamins - some people believe in them, some don't.  They have helped me tremendously and I credit them for my normal blood panel even while Celiac and my so-far speedy recovery.

 

Anyhow.... (got that out of the way - if you're still reading, I'm assuming you're open to vitamins/supplements)

 

I started getting potential Thyroid issue symptoms some months back - forget how long ago now - and also started getting the pre-menapausal hormonal weirdness crap - which I know messes with your Thyroid, and when your Thyroid is unhappy it can make your Adrenal glands unhappy.  So I started taking a Thyroid Support supplement along with an Adrenal supplement and my Thyroid symptom went away, my energy improved, and my pre-menapausal crap tamed down - didn't go away, but got much better.

 

If you're interested, these are the ones I take:

Gaia Thyroid Support:  http://www.vitaminshoppe.com/p/gaia-herbs-thyroid-support-120-veggie-caps/gh-1153

Natural Sources, All Adrenal: http://www.vitaminshoppe.com/p/natural-sources-all-adrenal-165-mg-60-capsules/nz-1001

(or if the adrenal tissue idea turns you off, Gaia also makes an Adrenal Health supplement)

 

<backing back out the door of the pity party... hoping no one minds that I snuck a gingerbread cookie...>

 

I'm not against vitamin supplements per se, but I know I won't rest easy until I know how the function of my thyroid is via blood tests. Thanks for taking the time to share. :)

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Anything metabolic is thyroid related.  If you are working out that much and eating small meals often (which helps to boost metabolism, as you already know), and that isn't helping, have your thyroid screened with a FULL THYROID PANEL.  That could be key to your problems.

 

I don't mind your talk of exercise.  I love weight training and it's good to hear what other people do!

 

 

Thanks for your input. I am assuming that a full thyroid panel includes TSH, T4, freeT4 and T3? Is there anything else I need to make sure of? Does fasting matter? I want to say it does for thyroid panels..

 

And I'm glad I am not the only one addicted to iron... :)

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i would also add both tests for thyroid antibodies because that will show whether or not you may have Hashi's.  The full thyroid panel will include all the tests you need.  No...fasting is not necessary for thyroid testing. It's not the same as blood sugar testing.  if your thyroid is off, it doesn't matter whether you eat or not.......it will be off.

 

Yeah......the weight training thing.  I have been doing it for 3 1/2 years now and actually have muscles I never knew were in there.  ;)   My muscles were non-existent at time of diagnosis. I love how much stronger I am. I can carry a boatload of grocery bags into the house after food shopping. You really get addicted to it. I can actually see me doing this till I croak!  Not to mention that you can eat more food and not have to worry about your weight.  So, that's why you may have a thyroid problem.  If you are doing 8 hours of weight work a week and still having trouble losing weight, then look to the thyroid. I wish I had more time to do more but when I retire, I can see me working out much more often. I can't say enough good things that it does for your body.

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Do not apologise for talking about your exercise! (lifting isn't it?) I like it - certain people around me seem to think that exercise 'caused' Coeliac *bangs head against wall* and then I feel that I'm being irresponsible by continuing with it. So it's great to hear someone else focusing on it to get through the changes. Out of interest, what is RMR? 

 

Hah!  That's the first I've heard that some people think exercise is the cause behind Celiac - If that were true, there would have been NO POSSIBLE WAY that I would have gotten it! (Hangs head in shame at my lack of exercise ;-(  )

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Hah!  That's the first I've heard that some people think exercise is the cause behind Celiac - If that were true, there would have been NO POSSIBLE WAY that I would have gotten it! (Hangs head in shame at my lack of exercise ;-(  )

 

Aww.. Nikki.. let me show you the way!!  :P  I love lifting weights. That being said cardio is a big pain in the arse. I do it, but I do not Like it. I LOVE lifting. It's so therapeutic and like it was stated before - you get to eat more! I love food. :)

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    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
    • Research Celiac Ataxia for potential diagnosis. Look at Milk and dairy for potential head and sinus related issues.  I stopped dairy and I can breathe now! Saturated fat may also be a problem, but it's mostly dairy!
    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
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