Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bad Mood... Really Discouraged.

Newbie

By Newbie
in Coping with Celiac Disease

Recommended Posts

Newbie Rookie
Newbie
Posted

What do you do when you have a day where all you want is to eat anything WITH gluten and are so sick of gluten free foods just for the simple fact that they are gluten free? I know this may sound strange... but I'm new at this and I get so fed up at times. There are days where I don't mind eating gluten-free food, but then I have days where I'm just so sick of it and don't want to eat anything that is gluten-free! I feel like I have been gluten-free FOREVER and it's only been since december 24th, 2003. Not even one month! And because of celiac, I'm also very low on my vitamins and calcium especially... So everyday I take like 5 pills for this (recommended by my specialist). I'm just in such a bad mood right now. :( I do realize it could be so much worse, but it still manages to get me down a lot of times. My family is cooperative in the sense that they watch for cross contamination and all. And I don't wish for any of them to have celiac, but there are times when I wish I could just forget about this and eat like them. I don't of course say that to them because I wouldn't want them to feel bad eating around me or anything. I'm truly happy they don't have to go through this... I just wish I didn't either. I know that in the end I will feel much better, but not a day goes by where celiac disease hasn't entered my thoughts. I try to forget about it, but I feel like I can't. When I try to forget about it, I accidently grab a piece of bread and then quickly drop it back into the bag remembering about the celiac. It is just constant reminders everywhere. I just want to forget about it but it's like it overwhelms my thoughts so much of the time. I'm not obsessed or anything, don't get me wrong... I'm just sick of it I guess and wish I could forget about it but when I try to, I slip up... And I hate the days where I crave anything that is NOT gluten-free! :unsure: I haven't let myself indulge of course... but does anyone else feel like that? Sorry for the long post I just reallllly needed to vent. Thanks. :(

~Newbie

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


seeking-wholeness Explorer
seeking-wholeness
Posted

Newbie,

I can totally understand where your feelings are coming from. For me, it's not so much that I wish I could forget about celiac disease as it is that I wish I were further along the learning curve, and thus better able to see other aspects of myself and the world beyond celiac disease. It will get better, I know, but unfortunately the only cure for this problem is time. I sometimes wish I didn't have to think about food ALL the time, that I could just wait until I get hungry and then decide what I want to eat (the way it used to be), and that I could look at a salad bar or a friend's kitchen without automatically seeing all the possibilities for cross-contamination! And while I have never actually grabbed a slice of regular bread by mistake, I HAVE had nightmares in which I eat something that I know contains gluten.

I have actually found a new sort of "comfort food" that is commercially available and just happens to be gluten-free. I don't know if you like Asian food, but SOME of the Thai Kitchen instant rice noodle bowls are gluten-free. When I am craving something "normal" that is high in carbs, I fix myself one of these and really enjoy it! Maybe this sort of trick would be helpful to you, too.

Hang in there, and keep the faith that things will improve. You are doing a fine job adjusting, and your feelings are normal. I hope you feel better soon!

Guest TESTinME
Guest TESTinME
Posted

The first couple of months, it is a major adjustment getting used to the diet. For me, it is not worth how I feel when I digest. There are also a lot of great gluten-free products out there. Last night I had some rice noodles with meat sauce and gluten-free toast. My wife eats the rice noodles with me as she really doesn't notice the difference. You can supplement most of your favourite foods with gluten-free products.

Newbie Rookie
Newbie
Posted
  • Author

Thanks a lot. I'm feeling a bit better today. It's on and off I guess. Some days my mood is just fine, other days, I'm just so down about all this. I hope the good days outnumber the bad for everyone. Good luck and thanks!

~Newbie

wclemens Newbie
wclemens
Posted

Newbie, I can certainly identify with what you are saying! I spent so many years sticking to the diet, then feeling better and thinking I could go back to eating "normally." In time I learned how much better I feel when I am as gluten free as possible.

I noticed recently after eating in a restaurant, that the next day I was moody and irritable beyond belief, and since I had what I thought was a gluten free meal, I had to finally admit that there must have been hidden gluten somewhere. That is why I find it much easier to cook all my own food at home. The depression and bad feelings that set in after getting gluten are definitely not worth the experience of eating out, though there is one Mexican restaurant and two chicken places at which I can eat.

When examining where those feelings are coming from, have you thought of milk, dairy, egg whites, yeast, maltodextrin, yeast, etc.? Maybe you are getting foods to which you are allergic even though they aren't gluten.

I hope you see improvement as time goes by. The energy and stamina level which this diet provides are so worth the effort. Best wishes. Welda

  • 2 weeks later...
Lily Rookie
Lily
Posted

Hi Newbie,

I know how you feel I am going through exactly the same things. I am in the beginning stages of being gluten free so still have the terrible pain in my side and my headaches, etc. etc.. I was watching my co-workers last week partake in Pizza and boy did it look good! Some days I wake up and think it's ok, I'll get better and I can do this. Then I had an accidental ingestion on Saturday (I had something with modified food starch in it :( ) and it gets really discouraging. I realize as I heal and get better I can add some things back into my diet, but for right now I'm going on the allergy elimination diet so I can completely figure out once and for all what I'm allergic to. I know once my sensitivies die down I might be able to get some things back (dairy, tomatoes, etc.).

Good luck and email me anytime you need support. It gets lonely sometimes.

Blessings,

Lily

donnalois Newbie
donnalois
Posted

Dear Newbie,

Don't concentrate on what you can't eat but what you can! You can have any type of fresh fruit or veggies you want! Make yourself a Fruit/sorbet (gluten free sorbet) fancy drink in the blender, add a fancy straw and pull up a seat to start reading. Go thru the junk food allowable lists posted at Celiac.com and make a list of all the allowable junk food you can eat (eg some Hershey chocolate bars - see listings for more details). Join the local celiac group and ask fellow members where it eat out, what they like to order and why (I keep this list in the glove compartment of our car). Take a gluten free cooking course. Try making Nanimo bars but use 1 cup gluten free crushed corn flakes and 1/4 cup brown sugar to substitute for the graham wafers and indulge! Poke your nose into oriental or South American supermarkets, you don't know what rice based, half decent tasting specialty you might find! Stock up on gluten free potato chips for those 11:00pm junk food moods, indulge in a popcorn making machine. Be happy, your gluten intolerance was discovered before anything like diabetes or cancer set in! Think of it as being able to eat the frosting out of the bowl without having to finish the cake!

Life will get easier with time.

Donna

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Newbie Rookie
Newbie
Posted
  • Author

Thanks so much for your replies everyone. It's weird, some days I'm just fine being gluten-free, other days, I can't stand it. I was also just diagnosed with osteoporosis a couple of days ago... and I'm only 20 years old. I'm trying very hard to be upbeat, but it seems that everytime I go to the doctor, he just gives me more bad news. Well I guess everything happens for a reason, right? I'll try the suggestions you all mentioned. Once again, thanks a lot, and God bless you all.

~Newbie

weebitts36 Newbie
weebitts36
Posted

:blink:

Lol, I know how you feel, especially since I had no major sympthoms in the first place, and my diagnosis was made through a routine blood test. I have been a celiac for a little over a month now, so a lot of adjusting. Every weekend is spent visting different natural food stores, experiments with different recieps, bought a pasta maker, bought a bread machine (with little sucess), tried different pizza crusts, joined a support group, even arranged with different resturants to use some of my gluten-free foods to prepare dishes for me. There are still some days I feel like screw this gluten-free diet, days I fel so hungry, and days I do not even notice. So I live each day, and figure eventually it will all work out.

lesleyag Rookie
lesleyag
Posted

Hi,

I was diagnosed in December 2003, and I found it tough going Gluten free - especially with the bread. However, I feel so much better, I am 54 and wish I had been diagnosed years ago. I found a bread I love (Flax Seed Bread from Glutino). Broke down and ate Cream Puffs that a client made, and felt lousy for a couple of days (still not sure it wasn't worth it - they were so good!!!) I use Whole Foods Supermarkets - they seem to have a good selection of Gluten Free. I love eating out and have no problem cross-examining the chef! I was so happy for someone to finally tell me I wasn't crazy and there was a reason I felt so bad. Some days I wish I could eat anything I want and I get a litttle down but remind myself there is so much I can eat and how much better I feel. It's a state of mind. This message board is wonderful and there are many knowledgeable people that freely give advice and support. Good luck to you hang in there, the end result is worth it!

Lesley

  • 5 years later...
shendler Rookie
shendler
Posted

I've been gluten free four months and most of the time I don't crave gluten. However when I do crave gluten I find myself wanting food I did not like before I went gluten free.

TotalKnowledge Apprentice
TotalKnowledge
Posted
What do you do when you have a day where all you want is to eat anything WITH gluten and are so sick of gluten free foods just for the simple fact that they are gluten free? I know this may sound strange... but I'm new at this and I get so fed up at times. There are days where I don't mind eating gluten-free food, but then I have days where I'm just so sick of it and don't want to eat anything that is gluten-free! I feel like I have been gluten-free FOREVER and it's only been since december 24th, 2003. Not even one month! And because of celiac, I'm also very low on my vitamins and calcium especially... So everyday I take like 5 pills for this (recommended by my specialist). I'm just in such a bad mood right now. :( I do realize it could be so much worse, but it still manages to get me down a lot of times. My family is cooperative in the sense that they watch for cross contamination and all. And I don't wish for any of them to have celiac, but there are times when I wish I could just forget about this and eat like them. I don't of course say that to them because I wouldn't want them to feel bad eating around me or anything. I'm truly happy they don't have to go through this... I just wish I didn't either. I know that in the end I will feel much better, but not a day goes by where celiac disease hasn't entered my thoughts. I try to forget about it, but I feel like I can't. When I try to forget about it, I accidently grab a piece of bread and then quickly drop it back into the bag remembering about the celiac. It is just constant reminders everywhere. I just want to forget about it but it's like it overwhelms my thoughts so much of the time. I'm not obsessed or anything, don't get me wrong... I'm just sick of it I guess and wish I could forget about it but when I try to, I slip up... And I hate the days where I crave anything that is NOT gluten-free! :unsure: I haven't let myself indulge of course... but does anyone else feel like that? Sorry for the long post I just reallllly needed to vent. Thanks. :(

~Newbie

Bake up a big batch of gluten free brownies with exlax in them. The results will be similar without all the extra damage.

Seriously eating gluten will only make you feel worse. If you wouldn't do the above, why would you eat gluten?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    2. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748
    Hidden Peacock
    Newest Member
    Hidden Peacock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.