Coeliac as a teenager

[emma1semrad]

After nearly 1.5 years after being diagnosed with coeliac, I'm slowly feeling better, but not fully. It's also mostly now that I feel isolated, rather than still threatened by my symptoms. I'm currently 17 and in my final year of school before university, however, I just want to share how much coeliac has limited me before and is where I am now. I also hope that there are similar people of my age who can understand this struggle because being one of the little ones within my age group with coeliac, it sometimes feels lonely not being understood by everyone else around you. 

My coeliac journey started obviously from the moment I was born, similarly to everyone else, however, the symptoms really started kicking in at the age of 11-12. Luckily my symptoms were diagnosed at 16, which is a rare case for an age that young, however, the experience was still rather 'not nice', mildly put. I used to play football, and was one of the best, if not the best player(s) on my team. I often got told compliments and had set high expectations by those around me, my parents were always told how great I was out there and sports, generally, were my area of talent. I even was asked by the adult teams to play with them and had great football dreams. Unfortunately, I don't play football anymore, due to the complications it had brought me from coeliac disease. 

When I played football I often had extreme chest pains and shortness of breath; due to my unstable and slightly neglectful household situation at the time, my mental state was at its lowest and at that young age by self-diagnosis, I figured they were just panic attacks that I got on the field due to the pressure. I later got (mis?) diagnosed with Syndrome of Tietze and Asthma, which afterward my doctors never cared to further investigate, so to this day I'm still unsure whether or not I have coeliac + asthma combo or not. Either way, during these states I often had to lie on the ground and had pretty much everything happen similarly to a panic attack; unstable breathing, dizziness, chest pains, etc. One time I passed out due to fatigue and lack of nutrition, and at a later time in the years, I started having issues with eating, which I'll talk about a bit later. These symptoms, however, continued to worsen until eventually any type of endurance like running for those 90 minutes on the field would simply kill me, even if I stood there and ran 1 sprint. My body suddenly couldn't keep up with my mind and the will of the little girl before. I lost hope, and eventually, that will continue and quit for my health. These chest pains were often near my heart (I had worn this device that measured my heartbeats for a while) and moved places, however in general were in the center of my ribcage, between the hollow and my stomach; the place of the intestine. Of course, my heart was fine, but unknowingly then, it was my stomach that was not.

Another issue I had often, quite spread out throughout my life, was my problem with eating in general. Especially at the age of 15-16 (right before my diagnosis and everything worsened), I could barely manage to get food down my throat. I would always feel nauseated in every circumstance, food would feel dry and would form a lump in my throat and I would just not be able to swallow, because it felt like it'd fly right back out. I've been underweight my entire life, however, my weight would constantly be swinging between 50-55 kg, and I'd find myself losing 4kg in just 2 weeks or less. The few days before I got diagnosed with coeliac disease were kind of a blur because in a sense it was slightly traumatic. At that time it had gotten so bad, to the point that I started throwing up all my food and I could not eat anything. I sat above the toilet every morning gagging, with nothing coming out, as my stomach was emptied out already. I was just feeling horrible. Often before one of these 'episodes', similar to now, when I eat gluten, is firstly the sudden change in my body temperature. I often start feeling bad stings in my stomach, then get hot flashes and either have to sprint to the bathroom or I feel nauseated the rest of the day until it comes out one way or another. I'd often feel dizzy, have random blackouts, feel fatigued 24/7, have hair loss, weakened muscles and joints. Compared to everyone else my age I was seen as 'lazy' because I just couldn't keep up physically and in some cases academically I lacked and failed because I'd sit sick in class unable to pay attention. 

Before my coeliac disease, I was also constantly told that all my symptoms were mentally related and due to stress, which led me to be sent to a medical psychologist at a young age. It was scary and I felt constantly misunderstood and unheard by my doctors, even though partially my symptoms were mentally related due to bodily unrelated situations I had been put through in my life as a little kid. That combination of mental health issues and a weak physical state then and now is the biggest struggle that I've faced in my life. 

There are also the constant hospital and doctor visits, I've visited doctors in 3 countries trying to explain whatever I had, the ED's (emergency departments) at 1 in the morning, the number of doctors I've spoken to that could not figure out what was 'wrong' with me for the sake of their own lives, stressful late night evenings feeling sick and anxious, the dosages of medicine that did nothing and so on. Not fun times for sure!

My mental state was also strained, I had migraines that were either dull or sharp, lasting days or if I was lucky, just a few hours. With each time that my body got a symptom, like a slight stomach pain, my entire body would go into an alarming state and I'd spiral into a panicked state, having panic attacks, feeling dissociated with my surroundings and my body, brain fog, everything was just a blur. At that first diagnosis and right prior to it, the transformation of the diet, was my worst time and all I remember is the generals of it, not the details. 

It's now often that I still struggle, however, it's mostly unrelated to coeliac, except for the fact that my immune system is still weak and fighting itself, meaning it's unfocused on all the other infections. I've had a 2 month cold in which I had gotten ear, throat, and nose inflammation, later kidney stones, a sprained ankle that lasted a month, UTI and I am currently visiting doctors for another issue in my stomach plus all the coeliac related symptoms, however, I'm still trying to thrive. 

Although celiac disease still is and feels limiting nowadays, mainly due to me still feeling and getting sick, I push through. I picked up a new sport; volleyball, which I have been wanting to do for a long time. Back then at 12, I had a small circle of friends and uncaring people, yet I've now expanded my friend circle, gotten an understanding mom and dad, and a super sweet boyfriend who all understand my situation and respect my intolerance. They've been there throughout it all and seen me slowly try to recover. I've pursued to excel in my academics, (mainly the social sciences and I am now trying to get better in my science aspect which has been neglected in my life, so that's super exciting), even though I fail or do less at a test once in a while due to being sick 24/7 (At least that's what it feels like). I'm healing my mental state too, picking up good old habits and trying to generally create a rounded-up life. It's super hard, especially considering out of everyone I know, I always seem to be the unluckiest and I seem to fall behind on absolutely everything, but slowly I'm becoming okay with being a bit slower and am finding my own advantages. 

I just hope this helps others with similar symptoms worry a bit less, as they might not be in as bad of a predicament as they think they are in! ( or just find the symptoms super scary and shocking, like I did) I also hope that there are other teenagers, and adults as well, out there who can understand where I am coming from and can relate. I just hope everyone finds their own successful healing and it will definitely get better! You'll only come back stronger than the average person. 

[trents]

Welcome to the forum, @emma1semrad! Thanks for sharing your story and I'm glad you are beginning to find healing and peace with having celiac disease. Please remember you are not alone. I'm sure what you have shared will be a blessing to others on this forum as we not infrequently have young people join our celiac family on this forum.

[Wheatwacked]

Hi Emma.

You should save your post so you can look back and see where you were.

 

1 hour ago, emma1semrad said:

the fact that my immune system is still weak and fighting itself, meaning it's unfocused on all the other infections.

That is a sure sign of vitmin D deficiency.  That will not improve with diet. Only summer sun or supplementing.  A group of healthy lifeguards in Israel in August measured around 200 nmol/L (80 ng/ml).

1 hour ago, emma1semrad said:

a sprained ankle that lasted a month,

Low iodine intake will cause slow healing. Discussion with Dr. David Brownstein About Iodine

[knitty kitty]

Welcome to the forum, @emma1semrad!

Have you been checked for nutritional deficiencies?  What sort of foods are you eating currently?

Celiac Disease causes malabsorption of vitamins and minerals that our bodies need in order to heal and stay healthy.  If we can't absorb sufficient nutrients from our diets, we get sick.

Your symptoms, chest pains, shortness of breath, dizziness, fatigue, passing out, asthma, panic attacks, difficulty swallowing, nausea, unintended weight loss, difficulty keeping weight on, vomiting, hair loss, muscle weakness, and altered mental status, migraines, anxiety and panic attacks, dissociation, brain fog, poor memory formation, poor immune system in fighting colds and UTIs, kidney stones, abdominal pain, and slow wound healing are all related to deficiencies in vitamins and minerals, especially Thiamine Vitamin B 1.  

There are eight B vitamins that all work together.  Thiamine is the one that we run out of first since it can't be stored for long.  Without Thiamine, other vitamins cannot work and our bodies suffer.  Symptoms seem to wax and wane mysteriously depending on how much Thiamine we absorb from each meal.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  Our brains use more Thiamine just thinking at a desk than a marathon runner's muscles would.  Athletes, like you, need more Thiamine every day.  We need more Thiamine when we're sick, and under emotional stress or trauma, and physically active.  

Unfortunately, doctors are not trained in recognizing nutritional deficiencies.  They are trained to prescribe pharmaceuticals which alleviate some of the symptoms, not fix the root cause. 

I've lived the majority of my life suffering with the same symptoms as described above.  I studied Microbiology and nutrition at university so I could understand what was happening to me.  I've experienced malnutrition and this thiamine deficiency disorder.  I've corrected my nutritional deficiencies.  I corrected my Thiamine deficiency with over the counter Thiamine Hydrochloride, Allithiamine (TTFD) and Benfotiamine.  High doses of Thiamine made a dramatic improvement in my symptoms within an hour of the first dose.

Get tested for deficiencies before starting supplementation.  Ask for an Erythrocyte Transketolase test to measure your Thiamine level.  

Ask to talk to a nutritionist who can guide you to a nutritionally dense diet.  Ask about the Autoimmune Protocol Diet (Dr. Sarah Ballantyne, a Celiac herself, developed the diet and wrote the book The Paleo Approach) which promotes intestinal healing, and reduces inflammation.  

Reading Assignment 😸

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And visit...

https://www.hormonesmatter.com/artists-decades-long-dysautonomia-treated-with-thiamine/

Best wishes! 

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

@emma1semrad,

Thought of another article that might be interesting to you.  It's about female athletes and Thiamine improving their performance.

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

[emma1semrad]

On 11/25/2023 at 12:27 AM, trents said:

Welcome to the forum, @emma1semrad! Thanks for sharing your story and I'm glad you are beginning to find healing and peace with having celiac disease. Please remember you are not alone. I'm sure what you have shared will be a blessing to others on this forum as we not infrequently have young people join our celiac family on this forum.

Thank you so much for the comforting message! It's nice be to reminded that no one's alone and that it does get better🥹

[emma1semrad]

On 11/25/2023 at 12:32 AM, Wheatwacked said:

Hi Emma.

You should save your post so you can look back and see where you were.

 

That is a sure sign of vitmin D deficiency.  That will not improve with diet. Only summer sun or supplementing.  A group of healthy lifeguards in Israel in August measured around 200 nmol/L (80 ng/ml).

Low iodine intake will cause slow healing. Discussion with Dr. David Brownstein About Iodine

Thank you, I'll try to check these out! I wasn't made aware of any of these things by my doctors, so I appreciate this a lot!! Do you have any more information on vitamin D? and which supplements are the most effective? In the country I live in, due to the climate, there is already pretty much a yearly all-round lack of vitamin D and I don't know how to fill in 2 major deficiencies (climate + nutritional absorption). Either way, still thank you so much🩷

[emma1semrad]

On 11/26/2023 at 6:06 AM, knitty kitty said:

Welcome to the forum, @emma1semrad!

Have you been checked for nutritional deficiencies?  What sort of foods are you eating currently?

Celiac Disease causes malabsorption of vitamins and minerals that our bodies need in order to heal and stay healthy.  If we can't absorb sufficient nutrients from our diets, we get sick.

Your symptoms, chest pains, shortness of breath, dizziness, fatigue, passing out, asthma, panic attacks, difficulty swallowing, nausea, unintended weight loss, difficulty keeping weight on, vomiting, hair loss, muscle weakness, and altered mental status, migraines, anxiety and panic attacks, dissociation, brain fog, poor memory formation, poor immune system in fighting colds and UTIs, kidney stones, abdominal pain, and slow wound healing are all related to deficiencies in vitamins and minerals, especially Thiamine Vitamin B 1.  

There are eight B vitamins that all work together.  Thiamine is the one that we run out of first since it can't be stored for long.  Without Thiamine, other vitamins cannot work and our bodies suffer.  Symptoms seem to wax and wane mysteriously depending on how much Thiamine we absorb from each meal.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  Our brains use more Thiamine just thinking at a desk than a marathon runner's muscles would.  Athletes, like you, need more Thiamine every day.  We need more Thiamine when we're sick, and under emotional stress or trauma, and physically active.  

Unfortunately, doctors are not trained in recognizing nutritional deficiencies.  They are trained to prescribe pharmaceuticals which alleviate some of the symptoms, not fix the root cause. 

I've lived the majority of my life suffering with the same symptoms as described above.  I studied Microbiology and nutrition at university so I could understand what was happening to me.  I've experienced malnutrition and this thiamine deficiency disorder.  I've corrected my nutritional deficiencies.  I corrected my Thiamine deficiency with over the counter Thiamine Hydrochloride, Allithiamine (TTFD) and Benfotiamine.  High doses of Thiamine made a dramatic improvement in my symptoms within an hour of the first dose.

Get tested for deficiencies before starting supplementation.  Ask for an Erythrocyte Transketolase test to measure your Thiamine level.  

Ask to talk to a nutritionist who can guide you to a nutritionally dense diet.  Ask about the Autoimmune Protocol Diet (Dr. Sarah Ballantyne, a Celiac herself, developed the diet and wrote the book The Paleo Approach) which promotes intestinal healing, and reduces inflammation.  

Reading Assignment 😸

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And visit...

https://www.hormonesmatter.com/artists-decades-long-dysautonomia-treated-with-thiamine/

Best wishes! 

I've never even heard of the word Thiamine...so this is super helpful! I did biology in secondary, however, we covered just the basics and from my general knowledge only know the surface of all the nutrients. I'll make sure to read through all the reading assignments and take notes😝. I was thinking of taking allergy tests as well as nutrition deficiency tests, but my parents always push this aside and my doctors generally do not seem to care or give out any of this kind of information, so I'm grateful. They all tell me I'm mentally ill when I lack nutrients and they're just lazy. So I'm happy that this could be a great possible solution! Thank you for the specific terminology🙂 I now know what to search for specifically! 

[emma1semrad]

On 11/27/2023 at 7:06 PM, Scott Adams said:

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

Thank you! I wasn't aware of the above information at all so this is super helpful. I was aware that further allergies were possible and thought of taking a test, but I don't know how to approach my doctors with it and how to ask for it specifically. Either way thanks a lot, I will make sure to read the article!

[trents]

Keep in mind that an allergy and an intolerance are not the same. Celiac disease is not an allergy, it is an autoimmune disorder. I'm not sure what the immune system crossover is between food intolerances, food sensitivities and celiac disease is but there does seem to be something there. The way I think about it is that one food-related immune system disorder can lead to others because the immunes system has become dysfunctional to some degree.

[knitty kitty]

9 minutes ago, emma1semrad said:

I've never even heard of the word Thiamine...so this is super helpful! I did biology in secondary, however, we covered just the basics and from my general knowledge only know the surface of all the nutrients. I'll make sure to read through all the reading assignments and take notes😝. I was thinking of taking allergy tests as well as nutrition deficiency tests, but my parents always push this aside and my doctors generally do not seem to care or give out any of this kind of information, so I'm grateful. They all tell me I'm mentally ill when I lack nutrients and they're just lazy. So I'm happy that this could be a great possible solution! Thank you for the specific terminology🙂 I now know what to search for specifically! 

Happy to help!   

Do look into the Autoimmune Protocol Diet (AIP diet) and choose low histamine foods.  

During immune reactions and autoimmune reactions, our body makes and releases histamine.  Histamine causes inflammation which helps fight off antigens like gluten or pollen. 

Histamine is also found in foods.  High histamine foods include eggs, citrus fruits, and fermented foods - yogurt and pickles.  

Usually our body can break down histamine with the help of vitamins like Cobalamine B12, Pyridoxine B 6, thiamine B 1, and Vitamin C, and minerals like zinc, magnesium and copper.  If we're low in these nutrients, we can have difficulty getting rid of the histamine as fast as it's produced by our body or absorbed from our diet.  Sort of like Lucy in the chocolate factory....

During the time our body is overwhelmed with histamine, we seem to react to all sorts of foods.  People may react to foods that push the histamine threshold higher.  For this reason, you may want to wait until your histamine levels go down before doing allergy testing.  

Sweetie, I know what it's like to have people dismiss you as mentally ill when you're just "nutritionally challenged".  Celiac is a marathon, not a sprint.  You got this.  

Talking to a nutritionist may help.  Learn about nutrition.  National Institute of Health has fact sheets on vitamins and minerals.

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Keep us posted on your progress.  We're here to help.