Missing Normal Life

[Dima Salahi]

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. 

 

 

[trents]

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]

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

[knitty kitty]

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]

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]

Let's go fishing 🙂

[EmmyChoi]

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. 

[knitty kitty]

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]

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?

[Eric1980]

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]

Totally!

[Neytiri]

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 I've discovered such beautiful places ! 😍