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

Better isn't emotionally better. My life is being taken over...


DandelionH

Recommended Posts

DandelionH Apprentice

Hi all,
So... I've been posting a bit this week because I finally found this forum and it's really helpful! Apologies for slamming it with all my words but... thankyou for existing. I don't know what kind of reply I'm hoping for but I just need to rant. Or something.

This post probably echoes countless posts from others but I'm really concerned about my mental health at this point?! Not in the way I used to be when I was having panic attacks and massive periods of depressions, but more in an obsessive way...

I can deal with cutting out gluten. Having watched other relatives and living in a first-world country where options abound I'm not too stressed about that. But I react badly to dairy, so that's gone. And soy makes me wary because I'd like to get pregnant soon and heard it messes up your hormones. I've been reading about arsenic in rice, as posted in another thread, and don't want to avoid that too but don't feel super comfortable with as much of it as I was eating now... . I've begun eating meat again about a year ago when diagnosed, for the first time in 10 years. I feel like everything I believe is changing. My ethical take on life with the meat (yes, gluten free is possible as a vegetarian but without dairy and perhaps not soy / whilst recovering that seemed really unnecessary), my freedom because even the tasty gluten-free foods all seem to contain something else ominous/usually dairy and my feeling that I'm 'healthy' with all the sourdough and plant-based pies and ... I just... I don't know what I'm even saying. But it's because I don't know what I'm even doing.
I've been plodding along ok but I seem to be spending a LOT of time researching how to get optimum nutrition out of things and my choices feel so limited outside of that and I feel totally cut off from everything and distracted by it all. I'm always planning, obsessing, it's not...good.

Yes, my body feels better but it's starting to not feel worth it (beyond the gluten thing. Obviously) and now I can't go back because I like feeling good. Ergh.

The end...
Thankyou for listening :( .


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Hang in there!  It is tough going gluten free and having to modify your diet so drastically.   We have all been there or are still struggling.  

The dairy just might come back.  It did for me (most of it).  But prior to that I used a lot of soy and had a successful pregnancy.  I was on soy for most of my life.  I also have Hashimoto's and I do not think it impact me.  My thyroid was stable for 15 years and did not wack out until I hit the last year of perimenopause -- the same year I was diagnosed with celiac disease.  I also was diagnosed with diabetes a year later.  So, my diet is very limited on top of being gluten-free, allergies, lactose intolerant and now a histamine intolerance (I think).   The last two as a result of my July glutening.  Ugh!  

Things will get better!  The good news is that I feel a lot better and you will too.  Eat what you can in moderation and take one day at a time.

I hang out here because I have found a great group of people who are in the same boat.  It keeps me sane!  

DandelionH Apprentice

Oh gosh. Oh. Thankyou so much for responding. I really deeply appreciate your words and somehow they actually turned my mood completely around. I instantly felt less trapped.

I'm sorry to hear how much you've had to deal with thus far but the fact that you ARE dealing with it suggests a mighty strength :) and that really inspires me. It also sounds like even though things are getting more complicated, on some level they're getting easier.

I wondered about histamine intolerance actually. I was getting crazy hot flashes and chestpains from foods I didn't realise were some of the highest in histamines and was sure that was what was happening and then they just...totally stopped. Strange. I hope yours does too (and didn't know things could change in a lasting way as the result of a glutening?!).

Thankyou also for the 'one day at a time' comment. That really helps. I forget about that. And actually even posting helped because as I started writing I realised how true what I was saying was, how much my brain has been taken over with all this stuff and how it isn't worth being that stressed about. It probably also doesn't help other intolerances that may in fact be anxiety.

Even feeling well feels odd. Everything's just odd and I don't know what's in my head or not in my head or...bah. I quit.
I'll just listen to my body and not try to hunt down more overarching rules right now, I think.

You're right. Things well get better. I hope you're feeling good right now :) . Right now matters.
 

GF Lover Rising Star

You're all over the place huh....understand that perfectly.  I was quite sick when diagnosed and was afraid to eat... Anything.  Every time I ate before gluten-free hurt.  I would have pain before I even finished the meal.  Food = pain so I ate very little.  I started gluten-free with juicing for a month or two.  That got nourishment in me and no more pain.  The old pros on the forum got me thru starting to eat real food again.  Next problem, couldn't cook.  Never liked too.  They introduced me to simple things.  The crock pot became my friend.  I still eat simple meals.  I eat very little processed food.  If I want a sweet, I make it myself.  Same with waffles, etc.  Soon gluten will be a nuisance and not an enemy, trust me.  It is exhausting worrying about your food so much.  Don't worry about arsenic, soy, GMOs, just worry about clean eating.  The rest takes care of itself.  Life will continue, you'll get sick, maybe add a disease as you age but that is life.  I've survived cancer and have 5 AI diseases.  I don't sweat the small stuff :).  

One day at a time is something we have all had to learn.  Eat foods in moderation.  Most of us couldn't handle dairy in the beginning.  

Some symptoms go quickly, some take a year or two and some never leave.  That's just how it is.

Live your life, don't live your food.

Colleen 

bartfull Rising Star

Meat, broccoli, sweet potatoes. You can't beat the nutrition in that combination. I still eat rice but not as much as I used to. And I avoid soy even though I am no longer intolerant to it as I once was. Who needs the hormone effect or the GMOs?

I am lucky in that I never lost dairy as so many with celiac did at first. I eat a lot of cheese. But if dairy bothers you there are substitutes. Almond milk, olive or coconut oil instead of butter. I hear there are even cheese substitutes although I never tried them.

I remember being obsessed with my diet a few years ago. Then I got used to it and hardly ever even think about it anymore. It'll get easier. I promise.

DandelionH Apprentice

You're all over the place huh....understand that perfectly.  I was quite sick when diagnosed and was afraid to eat... Anything.  Every time I ate before gluten-free hurt.  I would have pain before I even finished the meal.  Food = pain so I ate very little.  I started gluten-free with juicing for a month or two.  That got nourishment in me and no more pain.  The old pros on the forum got me thru starting to eat real food again.  Next problem, couldn't cook.  Never liked too.  They introduced me to simple things.  The crock pot became my friend.  I still eat simple meals.  I eat very little processed food.  If I want a sweet, I make it myself.  Same with waffles, etc.  Soon gluten will be a nuisance and not an enemy, trust me.  It is exhausting worrying about your food so much.  Don't worry about arsenic, soy, GMOs, just worry about clean eating.  The rest takes care of itself.  Life will continue, you'll get sick, maybe add a disease as you age but that is life.  I've survived cancer and have 5 AI diseases.  I don't sweat the small stuff :).  

One day at a time is something we have all had to learn.  Eat foods in moderation.  Most of us couldn't handle dairy in the beginning.  

Some symptoms go quickly, some take a year or two and some never leave.  That's just how it is.

Live your life, don't live your food.

Oh Colleen,
What a message! Thankyou! THANKYOU. Another really helpful, heartening response. Even just hearing from people who DO understand perfectly how complicated it is when nourishment feels like the enemy and too hard.
I'm sorry to hear about your cancer experience. That would have been so...overwhelming. You are amazing and so is life. I'm glad we're both still here.
Thankyou for putting everything into perspective and simplifying the approach that does feel right in my guts (no pun intended): not sweating the small stuff, letting things happen as they do, clean eating and living my life.
Thankyou THANKYOU.
(Also keep hearing about these crock pots. I'm going to get one today...)

DandelionH Apprentice

Meat, broccoli, sweet potatoes. You can't beat the nutrition in that combination. I still eat rice but not as much as I used to. And I avoid soy even though I am no longer intolerant to it as I once was. Who needs the hormone effect or the GMOs?

I am lucky in that I never lost dairy as so many with celiac did at first. I eat a lot of cheese. But if dairy bothers you there are substitutes. Almond milk, olive or coconut oil instead of butter. I hear there are even cheese substitutes although I never tried them.

I remember being obsessed with my diet a few years ago. Then I got used to it and hardly ever even think about it anymore. It'll get easier. I promise.

True! Simple combos like that taste amazing and never hurt. Sweet potato is incredible...
Glad to hear avoiding soy is working for you. Although actually as I read 'who needs the hormone effect?' I realised I think maybe for the moment I do! My skin is clearer and my cycles continue when I drink soy. Everytime I stop they stop...
Which probably isn't good and is the result of a low weight so hopefully that's not the case forever and the slightly negative aspects of soy (it does make my stomach feel a bit weird if I have too much etc.) can be avoided...
Different strokes for different folks! And I love that this forum is bringing home how we all have similar but different experiences.

Hooray for your ability to eat dairy! And you're right about the options. I actually like Bio (or Vio in some countries) cheese more than I like ACTUAL cheese so definitely don't mind using that instead. I don't miss dairy or even like it so much, it's more the pain of avoiding something else that seems to replace gluten in a lot of convenient (social) meals. And a good source of nutrition. But that's ok. And maybe I'll get it back.

I'm glad to hear someone else has gone through the diet obsession and emerged with their brain in tact. I'm starting to think I will too :D !
THANKYOU!


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
BoJo Newbie

I think one of the issues with Celiac, for me at least, is dysregulation of emotions. I can become obsessive, compulsive and ruminate. I do believe it is a part of Celiac many of experience.  Tissue transglutaminase (Ttg) is a protein/enzyme catalyst involved in many biological interactions in the body. Ttg can influence mast cells, serotonin, and histamine which interestingly is a neurotransmitter, serotonin another neurotransmitter, asthma, lung health.......

In considering the elevated levels of Ttg in celiacs emotional regulation is an ongoing struggle. Rumination might be synonymous with obsessive. Rumination is a pretty good indication of depression or an oncoming depressive episode. Since our problem is food based, it is not very surprising many of become obsessive about food, vitamins, supplements.....We want a fix. I find the best thing I can do is try to relax and think about all the eighty and ninety-year-old people who grew up on and live on meat, potatoes, vegetables, and fruit. Really a pretty simple healthy diet. I try to stick with true and time tested. 

When it comes to all the fad diets and things that are unhealthy we never hear of fruit or vegetables being unhealthy and rarely meat. I am old enough to have lived through the carbohydrate fear, fat fear, butter fear, whole milk fear......through time most have been found to be wrong or at the very least, ill-conceived. Just stick to meat, potatoes, vegetables, and fruit. It is time tested and has never been a fad. And thinking about will not give you brain damage. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,650
    • Most Online (within 30 mins)
      7,748

    Alexandersgirl
    Newest Member
    Alexandersgirl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
    • Julie 911
      Good day! New members here and I have a question about medication. My gastroenterologist made me stop some medication during the gluten challenge beforenthe screening test but I have a little surgery tomorrow and I need to know if I can use tylenol for half a day or if it will give me false results using it.   Thanks 
×
×
  • 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.