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Feeling Low


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#1 looking for info

 
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Posted 29 December 2011 - 07:39 PM

I'm kinda new to the whole gluten-free living...I find myself having good days and bad days....sadly today is a bad day for me...I'm not talking about any type of reaction to eating gluten. I'm just talking about the whole overwhelming feeling that comes from being celiac.I'm not understanding why things just seem to be getting more difficult when it comes to coping with the gluten-free thing....Is anyone else in the same boat? I'm told take some vitamins to get my levels up so I do...then i find they contain gluten so i switch to gluten free vitamins but I find that they are too strong for me and may be causing other issues such as kidney damage. I stupidly switch shampoo's and find my hair falling out...so now having to switch to super expensive shampoo but im no longer losing hair..I just feel like i can't win and sometimes wish things could just be a bit easier....It seems like I react to everything soaps, lotions, hair care products....does it ever get any better?
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#2 RiaG14

 
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Posted 29 December 2011 - 08:41 PM

Unfortunately, I can not let you know if it will get any easier, but I am definitely in the same boat as you are. I'm very new at this and it is very hard to get used to and maintain. I'd love to hear what other (more experienced members) have to say!
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Diagnosed with celiac disease on 12/28/11 after positive blood test and biopsies after family member died of intestinal cancer caused by undiagnosed celiac. I do not have any GI symptoms but do get frequent headaches. I am trying to be 100% gluten-free for three months to see how my blood tests come back and if my headaches go away. Really, I'm just getting started with all of this and trying to figure it all out =)

#3 Roda

 
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Posted 29 December 2011 - 09:11 PM

In the beginning it can be really hard. I never realized how much gluten impacted almost everything in my life. I was mad, angry, jelous, and happy(to know how to feel better without alot of drugs) all at the same time. It was crazy. A lot of mistakes were made in the beginning, but it was a good learning tool for me. Three years into this and I still make mistakes. It happens, so don't beat yourself up.

Last year when my youngest son was diagnosed, I got to go through all the emotions all over again with him and then some more. I found myself having to check products that I usually didn't buy or want but he did. He had a hard time dealing with the emotional aspect of it at first. I wish I could have taken the pain away, but he needed to deal with it in his own way. Today he handles most things like a trooper. But occasionally he still has a down day, like today. He was telling me how it wasn't fair that his brother got to eat doughnuts and pizza(we are reintroducing gluten to him after 3.5 months of being gluten free). He was crying. We just let him work through the feelings and he eventually came out of it pretty quickly.

I bought a couple of books that helped in the beginning. Celiac for Dummies by Dana Korn and Celia's Marketplace grocery shopping guide.

I took a day and went through my kitchen and got rid of anything that I couldn't eat or the other's in the house wouldn't eat and donated it to the food bank. I set up a dedicated shelf in the pantry, drawer in the fridge, and small counter area just for the gluten eaters. I wanted my kitchen mostly my space since I do most of the meal prep. I gave the kitchen a good scrub down also.

I replaced any scratched/worn cookwear and plastic ware or gave them to hubby to use for gluteny things. I bought a new toaster, cutting boards, cooking utensils, pasta strainer, bakeware, griddle, and waffle maker. (a lot of my stuff was worn out anyway or hand me downs from my mom) This can be expensive so sometimes it's not feasable all at once.


Any baking items, condiments, herbs/spices that might have had cross contamination(I was bad about double dipping) I replaced. I banned any baking with regular flour and only made gluten free baked goods. The others were allowed to bring stuff in from the bakery if they wanted and it had to be handled as not to cross contaminate. All shared meals are made gluten free, no cooking to order or cooking two meals. I didn't want to go there.

I checked to make sure all of our personal care products were gluten free.

This all worked for the first year. Eventually I started having problems and had to eliminate any gluten free products that had gluten free oat cross contamination(I was aware of my severe gluten free oat sensitivity 7 months after I went gluten free, but didn't eliminate the cross contamination...see, mistakes still happened :P ) I also put my pets on grain free food after my youngest son was diagnosed since the kids do most of the feeding of the animals. They are doing well grain free too!

You can do this! Is it going to be hard? Sometimes yes. But all of the time and energy is so worth it to get my health back. I consider myself a veteran now and things are much easier now.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 rgarton

 
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Posted 30 December 2011 - 03:32 AM

I know this might not help but i am in the same boat. I got diagnosed in January and im sorry to say i haven't felt any better since, maybe a little less tired but that's about it. Food is a constant daily battle for me along with the emotional upset and severe anxiety. I guess it won't make you feel better in the sense of the future but knowing that there is help on hand like this forum for example really helped me through the early months just knowing i wasn't the only one! My severity of celiac is way way through the roof, highest count my doctors have ever seen so i know it will take me a lot longer than others to feel better, they reckon at least 2 years for me. But my mum felt 150% better after about 3 months!
I also changed all my shampoo, make-up, body care things, other wise i got tiny welts and blisters all over me...but now thats ok, except when i go to the hairdressers! So that made it a bit easier.
I guess it is challenging and tough but once you find something you can have its overwhelming joy! And i do find when i have a good day i really appreciate it and don't get my hopes up that i will be fine the next day too, its a day by day basis. At the beginning it will just feel like failure after failure, even now for me after so long its still finding things out and yep i ave really down crying days feeling like there is no hope but there is! I just focus on how i was before i was ill and get support from doctors, dieticians, friends and family. Seemingly the most i can do right now!

I do wish you the best of luck and hope you can find some light around a dark cloud at the moment.
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Lifes not waiting for the storm to pass, its learning to dance in the rain...

#5 Bubba's Mom

 
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Posted 30 December 2011 - 07:18 AM

I understand how you feel. I'm right there with you!
It takes a lot of detective work and label reading at first..and when we are first DXed, most of us aren't feeling very good. We're having to spend a lot of time and energy we don't have, learning how to cope, and cleaning, and cooking from scratch.
Our vitamin/mineral levels may be out of whack too?

I've been doing a lot of reading and *they* say it gets much easier. So far, it's been a struggle for me because I've found secondary food intollerances, which takes away a lot more foods.

I guess we need to just try to take it one day at a time? It's ok to feel sad, because in a way we are greiving the loss of foods and old habits. We can slip into depression if we let ourselves dwell on the things we can't have though. We have to try to learn to look at life with positives and what we CAN have..it's better for our overall health.
May I suggest starting a gratitude journal? Just a little notebook would do. Be sure to write down at least one thing you are grateful for each day. You can write down more than one thing, but doing so helps you look for "positives" when you're mostly feeling negatives. It's a simple thing..but it helps.
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#6 AndreaBozeman

 
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Posted 30 December 2011 - 08:01 AM

I, too, am newly diagnosed. The frustration about what you can/can't eat is definitely a factor. However, I have experienced more emotional ups and downs since I have removed gluten from my diet. Don't understand this.....anyone else experience this? I have been taking meds for clinical depression for over 25 years and have not had problems at all. But since going gluten-free, I have experienced several crying jags.
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#7 a1956chill

 
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Posted 30 December 2011 - 09:35 AM

...does it ever get any better?

Yes it does :)

I am not saying it is ever easy, but It does get better and it is worth it.

As your body heals so does your mind and soul.

Hang in there ,and come to these forums when you need to vent ,information or just need a BIG cyber hug.
(( HUGS))
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#8 a1956chill

 
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Posted 30 December 2011 - 09:41 AM

I, too, am newly diagnosed. The frustration about what you can/can't eat is definitely a factor. However, I have experienced more emotional ups and downs since I have removed gluten from my diet. Don't understand this.....anyone else experience this? I have been taking meds for clinical depression for over 25 years and have not had problems at all. But since going gluten-free, I have experienced several crying jags.

When I first when gluten free , I was a mess,emotions all over the place,anger,sadness ect..As your body detoxes from the gluten this may happen. Sometimes it is part of the withdraw from gluten.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#9 Cathey

 
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Posted 30 December 2011 - 02:10 PM

Hang in there, take one day at a time. I thought I was loosing my mind, I couldn't focus, concentrate, moody, nasty @ times,short tempered and down right miserable I can tell you it gets better. I still have good days and bad, but it's all in the healing. I'm still going through a barrel of test, because my new GI ordered them. Please take the advise of all the experienced people here, I have and it helps.

I started with a new toaster for me and cleaned out the house of ALL gluten, brought new non-stick calphalon fry pans. When our sons are home (one on his own the other in school)they eat what I prepare. I do have to have sandwich thins for my husbands lunch, they are prepared on his cutting board.
It has made my life so much easier having the home gluten free. I'm lucky I have no young ones home. Every week is new, I'm still finding food items that work and taste just like before. It's all trial and error, make sure you read all labels. When in doubt leave it out and research it @ home so next time you know. Check out the medication list if you are on any, google gluten free medication or call the drug company.
Take each day with a smile and feel better.
Cathey
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#10 love2travel

 
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Posted 30 December 2011 - 02:43 PM

Oh, I am so sorry that you are going through such a rough time. When I was first diagnosed it came as a huge surprise as I found out through screening that I had celiac. I did not believe it and was in denial. I love food too much and thought there was no way ever I would give up gluten. Well, until my doctor told me I must and ordered that I also get biopsies done. When they showed major villi blunting that was my wake-up call. I actually made a list of about 75 things I wanted to have one more time and continued eating gluten until I had every last thing on that list. Then I went cold turkey - that was the end of March. So, I have been gluten free ever since without cheating even once.

Like you the first few months were tough. Every food commercial on TV made me mad and/or sad, even if it was some yucky food I wouldn't have had before, anyway! I was such an emotional mess with mood swings all the time. I cried at anything and everything. I felt very sorry for myself. As a cook and baker I did not do much gluten-free bread baking to begin with because I knew it would not even come close. I actually avoided the kitchen for a bit (which is weird because that is where I am happiest). I grieved. I had anger.

After the first few months, even when seeing no positive physical changes because I did not feel sick from eating gluten, my attitude suddenly changed. It was practically overnight. My passion for cooking and baking returned. I was asked to teach gluten-free cooking classes. (I taught regular cooking classes before.) I continue to test recipes. I've always been a creative cook but you should see me now! It is such fun to be almost forced out of your comfort zone to try new things. I now bake with amaranth, quinoa, teff, sorghum, garfava, tapioca, corn, chickpea (and many more) flours. When I heard of those flours before I sort of inwardly rolled my eyes thinking that sounded way too healthy for me! Isn't that crazy?

My diagnosis may have actually saved my life and I feel blessed. I now see life differently in general. I take better care of myself because I see the whole picture now, not just little glimpses.

Just keep hanging on to hope because it is always there, no matter what the circumstance. Everyone is different and heal mentally and physically at different stages. Hopefully things look sunnier for you very soon! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#11 alishabag

 
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Posted 31 December 2011 - 10:52 PM

Hi, it does get better but there are still times that are hard. I too am feeling low today. I usually do fine but I have definitely had my ups and downs. I have been gluten free for several months and overall I am doing some better. I just found this forum today and it has lifted my spirit so thanks everyone!
I am spending New Years Eve alone while my hubby and kids are out with family. I have a mild fever today and my inflammation seems to be worse. I have spent a good majority of the day in the bathroom and you all know why I was in there. I didn't want to deal with that around extended family or have an accident so I stayed home. That's not why I am down, I am down because my hubby (best man in the world) feels like its an excuse to not go. Maybe I am too prideful to have an accident in public or to occupy the bathroom. I don't use the excuse too often but today I couldn't do it. What a "crappy" way to start the new year ! ;)
I am sure tomorrow will be better. I have been greatly blessed. I loved the idea of the gratitude journal that someone posted.
Good luck and don't give up! Just keep in mind that it is a process. Hang in there and Happy New Year!!!!!
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#12 Bubba's Mom

 
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Posted 01 January 2012 - 11:40 AM

Hi, it does get better but there are still times that are hard. I too am feeling low today. I usually do fine but I have definitely had my ups and downs. I have been gluten free for several months and overall I am doing some better. I just found this forum today and it has lifted my spirit so thanks everyone!
I am spending New Years Eve alone while my hubby and kids are out with family. I have a mild fever today and my inflammation seems to be worse. I have spent a good majority of the day in the bathroom and you all know why I was in there. I didn't want to deal with that around extended family or have an accident so I stayed home. That's not why I am down, I am down because my hubby (best man in the world) feels like its an excuse to not go. Maybe I am too prideful to have an accident in public or to occupy the bathroom. I don't use the excuse too often but today I couldn't do it. What a "crappy" way to start the new year ! ;)
I am sure tomorrow will be better. I have been greatly blessed. I loved the idea of the gratitude journal that someone posted.
Good luck and don't give up! Just keep in mind that it is a process. Hang in there and Happy New Year!!!!!

Hello..and welcome!
I'm so sorry to hear you had to stay home and miss out on the festivities. Your hubby saying you were trying to use "toilet issues" as a free pass to stay home must have really stung?
I've walked in your shoes..and completely understand how humiliating it would be to have an "accident" in public. At my worst there were times when I had to run to the bathroom in my own home and didn't make it in time. Can you imagine running to public rest room and finding a waiting line? :o
It sounds like you may have been glutened? So easy when you're new to the diet or have others around you that aren't gluten-free. Drink lots of water to flush your system and stay hydrated. I'm wishing you a speedy recovery!

"crappy holiday" means something different to us..doesn't it? :P I'm hoping this will be your last one!
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#13 alishabag

 
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Posted 01 January 2012 - 04:44 PM

"Crappy Holiday" is pretty funny! Thank you for your advice, I really appreciate it. I just feel better knowing that others understand. Here's to a great, gluten free year! :)
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#14 silk

 
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Posted 01 January 2012 - 05:17 PM

What you are experiencing post DX is what we all have experienced. You are not on a diet. That would indicate that what you are doing is temporary and we all know that is not true. You are experiencing a Paradigm Shift. "Think of a Paradigm Shift as a change from one way of thinking to another. It's a revolution, a transformation, a sort of metamorphosis. It just does not happen, but rather it is driven by agents of change." I just looked this up and it is exactly what we go through. If you had a limb removed or lost one of your senses, you would not just not see again or walk again, you would have to adapt everything you do and everything you think about your way of life to that change.

It IS very hard, and even after 4 years, I still have my moments but I promise you it does get better. Eventually it will just be your life as it is, with all of the possibilities of the joy, happiness, sorrow, pain, love and humor that everyone else experiences all over the world. And eventually you will be able to experience joy over eating again, without really having to think too much about the process because it will become second nature.

My heart goes out to you. This website is a great place for information and support. Use it often.
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#15 RiaG14

 
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Posted 04 January 2012 - 09:57 AM

Thank you everyone for sharing your stories! They were all great to read through, and very very motivational!
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Diagnosed with celiac disease on 12/28/11 after positive blood test and biopsies after family member died of intestinal cancer caused by undiagnosed celiac. I do not have any GI symptoms but do get frequent headaches. I am trying to be 100% gluten-free for three months to see how my blood tests come back and if my headaches go away. Really, I'm just getting started with all of this and trying to figure it all out =)




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