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Symptom-free Celiacs.... Why bother

Glutenismylife

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Glutenismylife Newbie
Glutenismylife
Posted

I was diagnosed with celiacs disease last year by blood test and endoscopy.   I was originally trying to find out why I kept getting these mysterious rashes..... Which led to the diagnosis of celiacs however that is not the causes of my rashes, go figure.  I have read through all of the symptoms of celiacs and as I do have joint pain and allergies, anxiety and depression, some bloating, I was never bothered by them before I was diagnosed.  Since going gluten-free for about a year now all of the symptoms have gotten worse.  I am more depressed.... And have been in physical therapy all year for different joint pains.  So I'm not seeing any Improvement at all.  If I never went to the doctors to find out what the rash was for in the first place I would have never found out about celiacs disease.  So my question is what is the point of going gluten-free if I never have symptoms that I haven't learned to deal with to begin with.  It's only causing me more depression anxiety and causing me to eat more sugar because it's the only thing I can find I can eat.  Help!  

I have been excluded from invitations to go out with friends.  If I make plans to go anywhere I have to research to find out if I can eat there or where I'll be able to eat.  My life is now revolving around eating and cooking and preparing my food.   Right now I'd much rather live a happy life I don't care if I died 10 years earlier.  

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ravenwoodglass Mentor
ravenwoodglass
Posted

When we have DH (the skin form of celiac) and neuro impact (depression and anxiety) we have to be very strict for those problems to resolve. The rash can take a long time to clear as the antibodies take time to clear out of the skin. Many also have to avoid iodine. I only had to avoid iodized salt but some have to also avoid high iodine foods. After the rash heals we need to add iodine back in though as it is a needed nutrient.  Do check your toiletries for gluten ingredients. While gluten can not be absorbed by intact skin if you have a rash present then your skin is not intact.

You say you have increased the amount of sugar you eat. That is not good. There is a lot of food that is naturally gluten free. That is what we need to go with. It can be hard on us socially but there are ways to cope with that effect. Many bring food to a restaurant that is safe or eat before leaving home and just get a drink. Celiac is only isolating if you let it be.

Have you had a repeat Celiac panel run? That would be a good idea to make sure that your levels are going down. If they are not then you have gluten sneaking in somewhere.

If you haven't already do read the Newbie 101 thread at the top of the Coping section. It has a lot of good info for you. You may find you haven't been as gluten free as you think as gluten can be sneaky. I hope things resolve for you soon. It is very important you follow the diet strictly. It isn't just a case of perhaps dieing early. Celiac antibodies can attack pretty much any organ and can also contribute to the development of cancer and thyroid issues. It is a pain to get used to but get used to it you must for your sake and for the sake of those who care about you.

 

cyclinglady Grand Master
cyclinglady
Posted
23 minutes ago, Glutenismylife said:

I was diagnosed with celiacs disease last year by blood test and endoscopy.   I was originally trying to find out why I kept getting these mysterious rashes..... Which led to the diagnosis of celiacs however that is not the causes of my rashes, go figure.  I have read through all of the symptoms of celiacs and as I do have joint pain and allergies, anxiety and depression, some bloating, I was never bothered by them before I was diagnosed.  Since going gluten-free for about a year now all of the symptoms have gotten worse.  I am more depressed.... And have been in physical therapy all year for different joint pains.  So I'm not seeing any Improvement at all.  If I never went to the doctors to find out what the rash was for in the first place I would have never found out about celiacs disease.  So my question is what is the point of going gluten-free if I never have symptoms that I haven't learned to deal with to begin with.  It's only causing me more depression anxiety and causing me to eat more sugar because it's the only thing I can find I can eat.  Help!  

I have been excluded from invitations to go out with friends.  If I make plans to go anywhere I have to research to find out if I can eat there or where I'll be able to eat.  My life is now revolving around eating and cooking and preparing my food.   Right now I'd much rather live a happy life I don't care if I died 10 years earlier.  

Welcome!  Glad you found us.  Have you had follow-up testing?  This may determine if active celiac disease is your source of your current issues.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

If celiac disease is not the source of your joint issues, you might need to go back to your doctor to rule out other autoimmune disorders.  

Are you really sure your diet is truly gluten free?  Do you eat out?  Eat processed foods?  Consider a Whole Foods diet until you see improvement. 

http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/

it sounds like your friends are not very supportive.  I travel and dine with friends.  I usually bring my own food or eat prior.  I order a drink.  Everyone is used to it now.  I never feel excluded as I value feeling well.  But I had to let them know that I was okay with them eating and my not eating.  The goal is not to eat, but to maintain relationships.  I also plan outings that are not food focused.  Like going to the movies (I bring my snacks) or having a picnic where we bring our own foods.  I also host lots of gatherings too.  

I hope this helps.   Hang in there.  ?

 

Ennis-TX Grand Master
Ennis-TX
Posted

All the issues you said came up after going gluten-free. Three points
1. Are you sure you eating gluten free? If you eat out good chance your getting CCed, and is everything your eating really gluten free? There are many that are iffy on the market now days and CC can get in on some of the oddest aspects like shampoo, make up, lotion, medication, sauces, spices. etc.
2. Sounds like your have deficiency issues, what are you eating? Your supposed to eat a varied diet when gluten free, most gluten free processed foods are not enriched...most gluten food is essentially sprayed with vitamins. SO you need to eat a varied diet eating leafy greens meats, eggs, etc. I myself have other limitations and have to supplement what I would get from these. ALSO celiac makes it where you do not absorb all the nutrients from your food I have 2 suggestion of stuff you NEED to take. Liquid health Stress & Energy, Liquid Health Nurological Support, and Doctors Best Magnesium.... these will help with stress, muscle aches, and energy issues. NOW you might need some other things like D and a few others.
3. Sugars can cause all kinds of issues I know the issues with the craving.....I can not avoid them myself. I use some sweeteners like erythrol, stevia, monk fruit, etc to avoid the real sugar and the chemical BS ones. I make grain free, dairy free, gluten free baked goods, nut butters and snacks and even make a living off of selling them......I have a focus on making everything super moist as I know that is a huge craving for those of us with this.  Try moving to a healthier option if you can spiking your insulin and glucose levels is going to raise all kinds of havoc and the excess sugars can lead to candida or sibo in your intestines.

Oh and yeah if you think death is bad we had a member have to get a emergency colonstomy. They ignored it and ate gluten and kept on doing it.....yeah having to poop in a bag sounds worse then death or cancer to me....and those are your other options.

Glutenismylife Newbie
Glutenismylife
Posted
  • Author

Thanks for your replies.  Already had my intestines ruptured and had emergency surgery about 8 yrs ago due to diverticulitis.  

Yes I'm sure my diet is gluten free.... Been discussed with my doctor. I barely eat out due to CC. 

My friends have chosen not to invite me out because of my issues.   I can't blame them.  I don't even enjoy going out any place with them because it's torture watching them eat all the foods that I cannot eat while I sit there eating a gross protein bar or worse vegetables lol. 

All of my blood work has come back normal I do not have any deficiency issues.  

I do not enjoy vegetables and I do not enjoy eating food without flavor I would prefer to just not eat.  I have tried to eat that kind of stuff and I gag and end up not eating. 

I just don't understand why I should be eating eating gluten-free if I'm not having any symptoms.  I honestly believe my joint pain is caused by other things.  It seems as though I would prefer to live my life happily eating the foods I enjoy and may be dying a little quicker rather than being miserable my entire life and having to live longer with my miserable life.  

 

Victoria1234 Experienced
Victoria1234
Posted
9 minutes ago, Glutenismylife said:

It seems as though I would prefer to live my life happily eating the foods I enjoy and may be dying a little quicker rather than being miserable my entire life and having to live longer with my miserable life.  

You certainly have the right to choose this if you wish. But consider the idea that one day you might have a significant other, or something else in your life that is worth living for. Perhaps even children! Those extra 15- 30 years of health might be more than welcome to have then. And also realize you will be opening yourself to getting one, if not more, autoimmune diseases that are a whole lot LESS pleasant and easy to control as celiac.

How old are you, if you don't mind me asking?

Glutenismylife Newbie
Glutenismylife
Posted
  • Author

Yes I know you are correct I just think I'm in denial and that it could lead to worse issues.  In my head I keep thinking if I never went to the doctor for the mysterious rash I never would have known I had celiacs to begin with and would still be eating those Foods.  Stupid I know I'm just having a hard time with this especially since I don't like a lot of foods that are gluten-free naturally

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Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, Glutenismylife said:

Thanks for your replies.  Already had my intestines ruptured and had emergency surgery about 8 yrs ago due to diverticulitis.  

Yes I'm sure my diet is gluten free.... Been discussed with my doctor. I barely eat out due to CC. 

My friends have chosen not to invite me out because of my issues.   I can't blame them.  I don't even enjoy going out any place with them because it's torture watching them eat all the foods that I cannot eat while I sit there eating a gross protein bar or worse vegetables lol. 

All of my blood work has come back normal I do not have any deficiency issues.  

I do not enjoy vegetables and I do not enjoy eating food without flavor I would prefer to just not eat.  I have tried to eat that kind of stuff and I gag and end up not eating. 

I just don't understand why I should be eating eating gluten-free if I'm not having any symptoms.  I honestly believe my joint pain is caused by other things.  It seems as though I would prefer to live my life happily eating the foods I enjoy and may be dying a little quicker rather than being miserable my entire life and having to live longer with my miserable life.  

 

Umm, I SOO want to cook for you. I make very flavorful gluten free dishes all the time. I tend to over season a bit I will admit. If you want I can give you links to a bunch of gluten free condiments, spices, etc.
Baked goods....yeah store stuff sucked for me, dry cardboard, I craved moist gooy dough, I craved stuff that melted in my mouth. SO I started a gluten free bakery, and everything I make is SUPER moist. It is targeted at being moist, and rich to satisfy that craving....There are a few companies that offer some stuff I might suggest. I can give you some interesting recipes also. I post several in the recipe section that might help out.

I have a food bucket list myself. Stuff with gluten, stuff that yes I can recreate but the pricing is not worth it. I have my family notified if I am dying like 100% going to die in the next 24 hours to bring me the food on the list. Number one is a monte cristo, I can make it gluten free...but paying $20 to make a bloody sandwich is retarded. I also have a funny will that I am to be buried with a specific list of foods that I can not eat, and a banquet to be served grave side...also some funny other things in my will, like requiring everyone to show up dressed in costume as their favorite character and me to be dressed as Alucard from Hellsing Ultimate.

Anyway on one other note if you keep on complaining about it and saying your going to eat it anyway despite the issues. Stop wasting our time, we tried to help, we told you what can happen, and we gave you options. If you still wish to go out like that, then I hate to say it but please stop trolling us and leave.

  • 2 weeks later...
Washingtonmama Contributor
Washingtonmama
Posted

Ennis, do you sell your recipes? Ill buy some. ?

Ennis-TX Grand Master
Ennis-TX
Posted

Looking back on this post I realize the OP had some other issues....the finding that veggies made them gag, that is a sign. Normally children with celiac get it more often, forgot what it was called but certain textures and flavors end up making them gag and feel sick. I know we had a few times when members talked about it. The Joint pain is cause by either a deficiency issue related to celiac of by inflammation caused by the immune responses related to celiac.....Ugg I regret not trying to help more.

2 hours ago, Washingtonmama said:

Ennis, do you sell your recipes? Ill buy some. ?

I have some posted in the recipe section I might send you a few in PM that I normally keep in the bakery. I recent came out, with by accident a lemon loaf cake while trying to develop a sandwich bread.

ravenwoodglass Mentor
ravenwoodglass
Posted
1 hour ago, Ennis_TX said:

Ugg I regret not trying to help more.

 

Please don't feel bad. I agree the OP does have some issues that really can't be helped over a message board. Hopefully the OP will reach out for some help but we can't force him. He has to come to the realization himself. Unfortunately the neuro impact of the celiac may be excaberating issues that he has had and make that difficult for him. I do wish him the best and hope he can overcome his resistance and reach out for the help he needs. 

  • 1 month later...
tspiggy Apprentice
tspiggy
Posted
On 9/24/2017 at 1:42 PM, Glutenismylife said:

Right now I'd much rather live a happy life I don't care if I died 10 years earlier.  

This particular line really stood out.  This is your depression talking.  When you get your symptoms sorted out you'll begin to feel better and learn how to live with your celiac disease.  I'm not promising that it will be easy...it took about six months gluten-free for all of my physical symptoms to resolve but at least two years for the raging anxiety and crippling depression to abate.  Even now, five years post-dx, I still suffer from bouts of anxiety and depression for about a week if I'm accidentally glutened (which thankfully happens very infrequently).  You're not going to live a particularly happy life if you feel like crap all the time from eating gluten.  I was diagnosed five years ago, and remembering how awful I felt in the 18 months before dx has kept me from cheating.  I feel healthier and happier now more than ever and never want to go back to those days again.

You need more supportive friends.  If they've stopped inviting you simply because of your dietary restrictions then they're not friends worth keeping, anyway.  Focus on what you can eat rather than what you can't.  There's no point in lamenting what is no longer, and there is plenty of good, healthy gluten-free food that you can enjoy without feeling deprived.

Glutenismylife Newbie
Glutenismylife
Posted
  • Author

Thanks very much for all of your input.  Since I first posted this things have gotten a little easier.  Bakery items is one of my most favorite things that I am missing.  I would love some recipes  And no I am not trolling lol

Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, Glutenismylife said:

Thanks very much for all of your input.  Since I first posted this things have gotten a little easier.  Bakery items is one of my most favorite things that I am missing.  I would love some recipes  And no I am not trolling lol

Check the recipe section have some of my reicpes and even a few things from my bakery there
https://www.celiac.com/forums/topic/119394-gluten-freegrain-free-chocoalte-mug-cake/

https://www.celiac.com/forums/topic/119746-grain-free-chocoalte-pumpkin-brownies/

https://www.celiac.com/forums/topic/118661-cinnamon-roll-cookie-cake/

https://www.celiac.com/forums/topic/117818-grain-free-vegan-cheddar-biscuits/

https://www.celiac.com/forums/topic/117479-paleo-cinnamon-cake-recipe/

https://www.celiac.com/forums/topic/117322-vegan-cheesy-garlic-knots/

 

squirmingitch Veteran
squirmingitch
Posted
On 11/7/2017 at 7:42 PM, Glutenismylife said:

Thanks very much for all of your input.  Since I first posted this things have gotten a little easier.  Bakery items is one of my most favorite things that I am missing.  I would love some recipes  And no I am not trolling lol

The recipes in this cookbook are astounding!!! Sooooooo delicious! You really won't believe how much they taste like their gluten counterparts. Start with the original one & then later you can buy vol. 2. Seriously, I don't know how they figured out how to make these breads, pastries, biscuits, cakes, & so forth feel & taste like gluten food but they did. I bet your friends won't even notice it's gluten free!

Open Original Shared Link

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  • 2 weeks later...
Glutenismylife Newbie
Glutenismylife
Posted
  • Author

Thanks very much everyone

 

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    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

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    • marion wheaton
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      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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