Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Missing Normal Life

Dima Salahi

By Dima Salahi
in Coping with Celiac Disease

 Share

Recommended Posts

Dima Salahi Rookie
Dima Salahi
Posted

I have been diagnosed with Celiac Disease in May of 2018. I read all about the labels, the ingredients, what I should eat and what I shouldn't be eating and have been doing well. I was feeling alright for a while up until I started noticing that I get an upset stomach when I ate other stuff but I couldn't tell what the issue was. I recently did an allergy blood test at one of the labs and I was able to know that dairy and the main types nuts bothered me as well. So I stopped eating them.

In the beginning I was ok with stopping all of this and accepting that I had to live with it for life, but two years onwards, I started missing eating the food I loved the most, eating out and trying new restaurants without having to tell the chef to eliminate ingredients and now with cutting out gluten, dairy and nuts, I feel very much deprived of food I used to enjoy eating. I do sometimes eat dairy/nuts because I crave that stuff, but I end up feeling sick and regretting it. I cannot stop feeling sorry for myself and tend to envy people who are able to eat whatever they like. I live in Jordan where gluten free and food limitations are not very known, so there are very few restaurants which I trust to eat at. I do have good food at home, but I miss eating out normally with my friends, having the luxury not to be that picky or to always have to explain to the chef what to add or not to add; it can be very stressful. 

I wonder if someone feels my agony. I am considering therapy for this issue to better deal with it, but I haven't seen anyone of the Celiac Community talk about the psychological effects of cutting food groups out for life. 

 

 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome, Dima!

All of us with Celiac Disease can certainly relate to what you are going through. Having Celiac Disease can be very socially limiting. I think it is less so if you are married and have grown children because a lot of social needs are met in that relational context and family tends to understand and make allowances.

But still, one of the hardest things for me is the impact it has on participation in my faith community activities, since food is usually a part of that. If, as in your case in Jordan, gluten free commodities are difficult to obtain that would make things that much more limiting. 

I think the hardest thing from a food standpoint for me is when I smell fresh baked bread. I want it so bad.

Dima Salahi Rookie
Dima Salahi
Posted
  • Author

Thanks Trents .. it’s nice to hear that others with the disease feel the same thing 🙂

knitty kitty Grand Master
knitty kitty
Posted

Dima Salahi,

Yes, I do feel your agony.  I understand.  Please get checked for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  Due to damage to our intestines, we may not be absorbing enough vitamins, minerals and other nutrients, like healthy fats.  Our bodies' way of correcting deficiencies is to crave the foods containing the nutrients you lack.  

Be sure to get enough Vitamin D, omega 3 fats, tryptophan (a form of niacin, B3), thiamine (B1), vitamin C, pyridoxine (B6) and magnesium.  These are needed to make neurotransmitters that make you feel better by helping your brain to function properly.  

I've suffered from severe depression (and food craving related lapses in diet) because I was so severely lacking in these nutrients before and after my Celiac diagnosis.  Therapy did not help me.  My doctors were not aware of the importance of these nutrients in mental health.  My doctors were trained to prescribe medications that only made things worse, instead of looking for the root cause.  Once I started supplementing these nutrients, I began feeling much less depressed and much more able to cope with the dietary changes and lifestyle changes necessary for Celiac Disease.  

I understand how you feel and I've been where you are in the journey to health.  I spent many wasted years taking antidepressants and in therapy which could not fix nutritional deficiencies.  In fact, many SSRIs and other medications deplete your vitamin levels further. 

Please do discuss with your doctor and nutritionist or dietitian about supplementing these vitamins and minerals as part of proper follow up care for Celiac Disease.  

Please keep us posted on your progress.  We're here to help you on this journey to health.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

 

cyclinglady Grand Master
cyclinglady
Posted

Choose other social things that do not involve food.  Like hikes, movies, playing games, etc.   You would be surprised at how much fun your family and friends will have.  Another thing that I do is host gatherings.  Everything is gluten free.  No worries for me and everyone loves my gluten-free cooking.  Friends help offset expenses by bringing unprepared food. It works for me.  When I do meet up at restaurant, I order a drink and enjoy the company, because that is what is all really about. 

DJFL77I Experienced
DJFL77I
Posted

Let's go fishing 🙂

EmmyChoi Newbie
EmmyChoi
Posted

Yes I know how you feel, I've been gluten free for years now so it's gotten a lot easier. But I have recently been diagnosed with Gastroparesis which makes it hard for my body to digest food and I get full after eating very little. This has been very depressing, as being a Celiac you are already living with a limited diet but now your diet is limited even more because your food doesn't digest properly. I agree with seeing a nutritionist I have for both Celiac and Gastroparesis, it makes me bitter at times watching people eating pizza, nuts and dairy, meat etc. When I used to be able to enjoy those things years ago, its hard to stay preoccupied especially being cooped up in the house for all these months. 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Gastroparesis can be caused by thiamine deficiency.  

Many Celiacs suffer from vitamin and mineral deficiencies even on a gluten free diet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3499101/

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

Get tested for thiamine deficiency using erythrocyte transketolase test.

My gastroparesis has improved dramatically with thiamine supplementation.

Hope this helps!

Dima Salahi Rookie
Dima Salahi
Posted
  • Author
20 hours ago, EmmyChoi said:

Yes I know how you feel, I've been gluten free for years now so it's gotten a lot easier. But I have recently been diagnosed with Gastroparesis which makes it hard for my body to digest food and I get full after eating very little. This has been very depressing, as being a Celiac you are already living with a limited diet but now your diet is limited even more because your food doesn't digest properly. I agree with seeing a nutritionist I have for both Celiac and Gastroparesis, it makes me bitter at times watching people eating pizza, nuts and dairy, meat etc. When I used to be able to enjoy those things years ago, its hard to stay preoccupied especially being cooped up in the house for all these months. 

Oh I am sorry to hear that you have such a condition, and yes with the corona virus everything seems to be going downhill. Have you considered therapy?

  • 4 weeks later...
Eric1980 Newbie
Eric1980
Posted

Hi, yes it sucks.  I wish I could just go out to a eatery and eat anything on the menu. Resorting to the little tiny gluten free section sucks. I feel like I eat the same 5 things over and over again

Dima Salahi Rookie
Dima Salahi
Posted
  • Author

Totally!

Neytiri Explorer
Neytiri
Posted

Hi Dima ! Yeah, it's truly stressful being on a gluten-free diet, especially if you are also intolerant to lactose XD :( I feel the same way, when I window-shop and I admire all the delicious cakes and pastries of a bakery, it makes me feel sick and sad 😢 I just would like to eat everything without worries and concerns ! So don't worry, you're not alone in this battle ;) I must moreover agree with the Cycling Lady who has suggested you to do other things, other than cooking or going to restaurants : I've gone hiking for some years and that was wonderful :D I've discovered such beautiful places ! 😍

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. knitty kitty
      - knitty kitty replied to AnneBSunflower's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      mystery gluten?

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too. I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's. So antibodies aren't necessarily due to gluten ingestion. https://pubmed.ncbi.nlm.nih.gov/31149170/ Take a B Complex supplement and Benfotiamine...
    2. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      @Rejoicephd, Would you consider adding a B Complex to your supplements? I was taking a multivitamin and still became deficient. There's a question as to how well multivitamins dissolve in the digestive system. I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery...
    3. knitty kitty
      - knitty kitty replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      almost a year in recovery - so many questions about to give up

      @kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies...
    4. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    5. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,650
    • Most Online (within 30 mins)
      7,748
    k3ndra
    Newest Member
    k3ndra
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      mystery gluten?

      By knitty kitty · Posted

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too.  I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's.  So antibodies aren't necessarily due to gluten ingestion.   https://pubmed.ncbi.nlm.nih.gov/31149170/   Take a B Complex supplement and Benfotiamine, a form of thiamine shown to promote intestinal healing, and Vitamin C.  This study found a higher rate of thiamine and Vitamin C deficiencies in people with Hashimoto's.   https://pubmed.ncbi.nlm.nih.gov/37278003/   Try cutting back on the amount of iodine in your diet.  Iodine, even in small amounts, can stimulate the thyroid which in turn stimulates the immune system which increases antibody production.   Dairy and eggs are high in iodine.  Switch from iodized salt to Pink Himalayan salt.   https://pubmed.ncbi.nlm.nih.gov/9703374/   Supplement with Selenium, a mineral that helps the thyroid function and calms the immune response in the thyroid.   https://pubmed.ncbi.nlm.nih.gov/37033262/ Hope this helps!  Keep us posted on your progress!
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
×
×
  • Create New...