Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

Rate this topic

Recommended Posts

Hello,

I was diagnosed on the 18th of February 2021, and I've been on the gluten free diet for almost a week. I'm only 17 and have yet to figure out whether the trigger was the extreme stress of starting uni in COVID times and having no friends with me as well as no job experience, or if I was born with it and it just developed over time. I started experiencing extreme symptoms in the first week of uni, starting on the 2nd of February and thought I had developed extreme anxiety due to stress. My main symptoms are vomiting in the mornings even with no food in my stomach, bad nausea, fatigue, feeling uncomfortably full quickly during meals, no appetite, stomach bloating and muscle pain (primarily in my legs) as well as symptoms of depression and anxiety. I also lost about 3kg in just under two weeks. My mornings are horrible but I tend to get better as the day progresses (even when I was actively eating gluten) and at night I feel almost like my normal self, albeit more anxious and stressed. I've never had any experience with anxiety or depression and I've always been happy-go-lucky. Since it was such a dramatic shift from how I normally am, my mother rushed me to the doctor where I got blood tests, which my body reacts horribly to, as well as a pylori breath test. I have struggled with low blood sugar and pressure all my life and in the months predating my diagnosis I had started having symptoms of what I assumed was lactose intolerance but was never diagnosed. Since being diagnosed with Celiacs I've started having dairy again with only gas and no abdominal cramps (which I used to get). I've always been underweight and small; to put into perspective, I am 152cm tall and used to weigh 43kg, now only barely weighing in at 40. I've always struggled gaining weight and assumed I had a fast metabolism since I lose weight quickly. I've never experienced anything like this month. I was diagnosed with the blood test and have not done a biopsy or endoscopy as I'm deeply afraid of medical procedures, including blood tests and other tests. My sister and my dad are vegan so going for a gluten free household is not an option and I've always struggled with appetite and wanting to eat food, which has increased tenfold despite my body being the hungriest its ever been. I was recently glutened again when I made honeyjoys and accidentally used the butter my mother uses which is contaminated so I'm experiencing more symptoms and some are different, I've been having some memory and focus issues to an extent i've never experienced and my legs are really weak. I decided to join this website because I feel like I'm not handling this well and I have a lot of unanswered questions. Mainly, how do you keep weight on? I'm terrified of losing more weight and I have no idea how to gain and keep my weight healthy. I have more but I'd say that is my biggest one. As this is my first post, I apologise if I've done something wrong or if this is too long. I feel a smidge like I'm drowning and I'd really appreciate any support or advice to keep my head above water. Thank you!

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome to the forum Rachel_17.

1. It can take months to start feeling better after being on a gluten free diet. It can take a couple of years for the lining of the small bowel to completely heal but because of your youth I would expect it not to take that long if you are truly eating gluten free.

2. It is very common for celiacs to experience other food allergies/intolerances that have no gluten. Soy and dairy are the most common non gluten foods that celiacs are allergic/intolerant of but it can be almost anything. So watch out for how other foods affect you. Also, about 10% of celiacs react to oat protein the same way they do to wheat/barley/rye gluten. So I would suggest eliminating dairy, soy and oats from your diet for the time being.

3. As far as gaining weight, focus on foods that are calorie dense. High carbs, high fat. But beware that it is common for celiacs to have trouble with fats. Have you noticed oily stools?

4. Low appetite is sometimes the result of vitamin and mineral deficiencies. I would suggest you start taking an adult strength gluten free multivitamin and a high potency B-complex. Thiamine deficiency has been implicated in low appetite problems I believe. People with celiac disease typically develop vitamin and mineral deficiencies because of the damage to the small bowel lining where most of our nutrition is absorbed.

5. As far as sharing the kitchen with family who are not gluten free, that can really be problematic. Sounds like you need to have a conversation with family and impress upon them that even traces of gluten will make you ill. It might be necessary for you to have your own food items in a separate place, particularly things in jars and things that other people might insert a gluten contaminated spoon or knife into. Or maybe put labels on your food with your name on it and ask that others not use them. Also, it's important to wash cookware and utensils thoroughly.

I wish I could give you a quick fix for all that you are facing right now but I also hope that some of my suggestions might help you take heart.

Share this post


Link to post
Share on other sites

Rachel,

You have symptoms of thiamine deficiency:

Weight loss, muscle weakness, loss of appetite, nausea, anxiety, altered mental state.

 

Doctors believe thiamine deficiency can not occur outside of alcoholism.  That is not true! 

Thiamine deficiency can occur in malabsorption conditions like Celiac Disease.

Thiamine is used up quickly when under stress, emotional or physical.  Thiamine cannot be stored for long in the body.  You can experience thiamine deficiency in as little as ten days.  

When you switched to gluten free diet, you cut out wheat products which are enriched with vitamins, including thiamine.  Gluten free versions of breads and such are not required to be enriched.

You need thiamine to turn proteins, fat and carbohydrates into energy for your body and organs to function properly.  Without enough thiamine, your body uses stored fat and then starts burning muscle tissue for fuel, hence drastic weight loss.

You would be wise to ask your doctor about this.  High dose Thiamine can be given intravenously in hospital under doctor's care due to refeeding syndrome.   

My doctors didn't believe in thiamine deficiency outside of alcoholism (don't drink), and they said I was a hypochondriac and walked away.  I knew I was not mistaken and started high dose Thiamine with over the counter thiamine supplements, thiamine HCl.  I began feeling better within hours.  

Here's some articles....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

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

See the section on Thiamine deficiency in adults...

And...

"Vitamin B1 Thiamine Deficiency"

https://www.ncbi.nlm.nih.gov/books/NBK537204/

And...

Thiamin

Fact Sheet for Health Professionals

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

 

I still take thiamine as allithiamine (fat based thiamine that will cross the blood brain barrier) and benfotiamine to help my Type Two Diabetes, which increases my metabolic need for thiamine.

Thiamine needs magnesium to work properly, so magnesium supplementation is a must.  And thiamine needs the other B vitamins, so a good B Complex is a must, too.  

I'm really worried about you.  Once the mental weirdness sets in, the thiamine deficiency is getting severe.  Please seek medical attention.  I hope your doctor is not as closed minded as mine were.  Take those articles with you to show your doctor.

Please keep us posted on your progress.

Knitty Kitty

 

Share this post


Link to post
Share on other sites
4 hours ago, trents said:

Welcome to the forum Rachel_17.

1. It can take months to start feeling better after being on a gluten free diet. It can take a couple of years for the lining of the small bowel to completely heal but because of your youth I would expect it not to take that long if you are truly eating gluten free.

2. It is very common for celiacs to experience other food allergies/intolerances that have no gluten. Soy and dairy are the most common non gluten foods that celiacs are allergic/intolerant of but it can be almost anything. So watch out for how other foods affect you. Also, about 10% of celiacs react to oat protein the same way they do to wheat/barley/rye gluten. So I would suggest eliminating dairy, soy and oats from your diet for the time being.

3. As far as gaining weight, focus on foods that are calorie dense. High carbs, high fat. But beware that it is common for celiacs to have trouble with fats. Have you noticed oily stools?

4. Low appetite is sometimes the result of vitamin and mineral deficiencies. I would suggest you start taking an adult strength gluten free multivitamin and a high potency B-complex. Thiamine deficiency has been implicated in low appetite problems I believe. People with celiac disease typically develop vitamin and mineral deficiencies because of the damage to the small bowel lining where most of our nutrition is absorbed.

5. As far as sharing the kitchen with family who are not gluten free, that can really be problematic. Sounds like you need to have a conversation with family and impress upon them that even traces of gluten will make you ill. It might be necessary for you to have your own food items in a separate place, particularly things in jars and things that other people might insert a gluten contaminated spoon or knife into. Or maybe put labels on your food with your name on it and ask that others not use them. Also, it's important to wash cookware and utensils thoroughly.

I wish I could give you a quick fix for all that you are facing right now but I also hope that some of my suggestions might help you take heart.

Thanks for the welcome, just talking about this stuff properly was helpful, thank you for your advice! I feel way better in the afternoons (in which this reply is taking place). And in those few days before being glutened again I had started to feel better and even avoided puking at all on one of those days (yay!). I'm very worried about cross-contamination continuing to damage my gut but I'll try my best to be as free from gluten as possible. About cutting out dairy, soy and oats, I'm very worried about finding things to eat, I am pressed for time because of uni and I'm often very tired after my courses and homework, I'm also a picky eater. I've cut out oats entirely since my diagnosis but dairy and soy are large parts of my diet as they are easy things to eat in order to gain weight. My plan as of now is to cut out gluten and once I've built up my meals and have recipes to fall back on, I'll cut out soy and dairy one at a time to see if I experience any changes. I have no oily stools and I'm pretty regular with bowel movements, even during my bad symptoms that was something I didn't really struggle with. I'm hoping once my gut heals more I'll be able to gain some more weight back, because right now I've been eating big lunches and dinner and am gaining back very small amounts, if any. 

I bought some vitamins today that contain iron, calcium, vitamin D3, potassium iodide, zinc and vitamin B12. The vitamins I have right now are also free of gluten and lactose. Is there anything else you'd recommend? Also, do pill vitamins absorb properly when I'm in this condition?

As for the family kitchen, after my morning funk I went out and bought a storage container to keep my toaster and foods in. I'm going to work toward getting in the habit of wiping down all surfaces with hot soapy water as well. I now have my own butter, Vegemite and other things in jars and various sauces I use in stir fries are now gluten free for the whole family. I'm going to buy a new non-stick pan as well in a specific colour and use that for all my cooking. Would you suggest getting my own cutting board and utensils as well?

Thanks for your suggestions, they're very helpful! I wish there was a quick fix too but this website is full of people saying they feel so much better after the transition! 

 

Share this post


Link to post
Share on other sites
4 hours ago, knitty kitty said:

Rachel,

You have symptoms of thiamine deficiency:

Weight loss, muscle weakness, loss of appetite, nausea, anxiety, altered mental state.

 

Doctors believe thiamine deficiency can not occur outside of alcoholism.  That is not true! 

Thiamine deficiency can occur in malabsorption conditions like Celiac Disease.

Thiamine is used up quickly when under stress, emotional or physical.  Thiamine cannot be stored for long in the body.  You can experience thiamine deficiency in as little as ten days.  

When you switched to gluten free diet, you cut out wheat products which are enriched with vitamins, including thiamine.  Gluten free versions of breads and such are not required to be enriched.

You need thiamine to turn proteins, fat and carbohydrates into energy for your body and organs to function properly.  Without enough thiamine, your body uses stored fat and then starts burning muscle tissue for fuel, hence drastic weight loss.

You would be wise to ask your doctor about this.  High dose Thiamine can be given intravenously in hospital under doctor's care due to refeeding syndrome.   

My doctors didn't believe in thiamine deficiency outside of alcoholism (don't drink), and they said I was a hypochondriac and walked away.  I knew I was not mistaken and started high dose Thiamine with over the counter thiamine supplements, thiamine HCl.  I began feeling better within hours.  

Here's some articles....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

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

See the section on Thiamine deficiency in adults...

And...

"Vitamin B1 Thiamine Deficiency"

https://www.ncbi.nlm.nih.gov/books/NBK537204/

And...

Thiamin

Fact Sheet for Health Professionals

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

 

I still take thiamine as allithiamine (fat based thiamine that will cross the blood brain barrier) and benfotiamine to help my Type Two Diabetes, which increases my metabolic need for thiamine.

Thiamine needs magnesium to work properly, so magnesium supplementation is a must.  And thiamine needs the other B vitamins, so a good B Complex is a must, too.  

I'm really worried about you.  Once the mental weirdness sets in, the thiamine deficiency is getting severe.  Please seek medical attention.  I hope your doctor is not as closed minded as mine were.  Take those articles with you to show your doctor.

Please keep us posted on your progress.

Knitty Kitty

 

I'll be sure to ask my doctor! She thought I might have Coeliacs pretty quickly so she seems pretty on the ball with this stuff. I'll also look into magnesium and I'm going to buy a good B Complex tomorrow as well. Thanks for the suggestion! I never would have thought of that! 

Vitamins seems like the way to go, I'll see when I can get in with my doctor to talk about it. Should also be getting another blood test soon to test my thyroid levels and a bunch of other stuff. Will update when I learn more, thanks for the advice!! :)

Share this post


Link to post
Share on other sites

Rachel_17, you are taking some good steps toward healing. A big part of finding healing will be you finding a sense of taking control of the situation and you are now doing that.

We want to emphasize the importance of adding to your vitamins a gluten-free high potency B-complex.

Are you vegetarian or vegan? If not, meats are loaded with a lot of the nutrition you need. And eggs. Eggs are a near perfect food from a nutritional standpoint. No offense intended but you may have to work on the picky eater issue in order to get the calories you need. Oh, and nuts/seeds would be an excellent choice as they are loaded with nutrition and calorie dense.

I definitely would recommend getting your own cutting board. Because of the texture of cutting boards, they can trap glute-containing micro crumbs. 

Edited by trents

Share this post


Link to post
Share on other sites

Welcome to the forum Rachel!

At this point it would be important for your direct family to also get tested for celiac disease, because ~44% of direct relatives also have it. Your sister for sure, but also your parents (if you have the genetic markers, they could have come from one or both of your parents). You may find out that you won't be alone on this diet in your household, and that alone might make life easier for you. If they don't want to be tested, remind them that most celiacs don't have any obvious symptoms.

This article might be helpful in this regard:

 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

Share this post


Link to post
Share on other sites

Thanks for bringing that up, Scott. I had intended to mention that to Rachel_17 but it slipped my mind.

Related to that is having Rachel_17 and her family members realize that:

1. Active celiac disease can develop at anytime in life.

2. People with the genetic potential for celiac disease will not necessarily develop celiac disease. It requires some kind of stress trigger (e.g., a viral infection) to move from the latent form to the active form.

3. People with active celiac disease may be largely asymptomatic for many years, e.g. they are "silent" celiacs

4. Even though celiac disease may be "silent," that doesn't mean no damage is occurring to the body.

5. The sooner celiac disease is caught and a gluten-free lifestyle is instituted, the better the chances are for minimal health consequences down the line.

Share this post


Link to post
Share on other sites
8 hours ago, trents said:

Rachel_17, you are taking some good steps toward healing. A big part of finding healing will be you finding a sense of taking control of the situation and you are now doing that.

We want to emphasize the importance of adding to your vitamins a gluten-free high potency B-complex.

Are you vegetarian or vegan? If not, meats are loaded with a lot of the nutrition you need. And eggs. Eggs are a near perfect food from a nutritional standpoint. No offense intended but you may have to work on the picky eater issue in order to get the calories you need. Oh, and nuts/seeds would be an excellent choice as they are loaded with nutrition and calorie dense.

I definitely would recommend getting your own cutting board. Because of the texture of cutting boards, they can trap glute-containing micro crumbs. 

I'm now on the lookout for a high potency B-complex now, as well as magnesium and maybe another iron supplement depending on my next blood test results. I'm neither vegetarian nor vegan, me and my mother just moderate our meat intake but I still have a decent amount of beef and chicken, just no pork (except occasional sausages) or lamb. I'm working on having more fish in my diet as well. I will work to include more egg in my diet as well, just preparation is difficult in the mornings when I'm glutened.

My go to cashews and almonds may contain gluten so I'm looking for more now as well. My mum has moved the gluten setup (toaster, bread and flour) away from the kitchen and we are going to buy new tea towels and cutting boards.

I am working on regaining control but Uni is the worst part so far because I have to keep up with my workload and lunch can be hard to do since I throw up in the mornings and some of my workshops are over lunchtime. Do you have any suggestions about how to increase productivity when glutened or will that increase as my body regains its function with vitamins and diet?

Share this post


Link to post
Share on other sites
4 hours ago, Scott Adams said:

Welcome to the forum Rachel!

At this point it would be important for your direct family to also get tested for celiac disease, because ~44% of direct relatives also have it. Your sister for sure, but also your parents (if you have the genetic markers, they could have come from one or both of your parents). You may find out that you won't be alone on this diet in your household, and that alone might make life easier for you. If they don't want to be tested, remind them that most celiacs don't have any obvious symptoms.

This article might be helpful in this regard:

 

I will certainly bring it up but considering that two out of four of my family members are vegan, I'm not sure of the results of that. My mum is talking about cutting out some gluten with me but bread is a hug staple in the diet of my father and sister. I'll make sure to ask them to get tested and see how that goes. Thanks for the advice! My dad seems concerned after seeing my symptoms so I think he will be the easiest to convince!

Share this post


Link to post
Share on other sites

Being vegan should not affect test results as long as they are consuming gluten daily.

Would it be possible to pack a gluten-free protein bar to take to class with you to get something in your tummy that is portable and doesn't require cooking?

You might makeup some hard boiled eggs and keep them in the frig for mornings when you don't feel up to preparation. They will be automatically be shielded from cross contamination.

It would not surprise me that the morning nausea will improve as your strategies for coping, (vitamins, menu changes, etc.) begin to take hold.

You are doing a great job of taking the bull by the horns as the old saying goes, especially for being only 17. A key for getting a handle on all this is to refuse to see yourself as a victim and taking control of what you can control. Keep the good work up! You have a huge advantage here in that your family sounds like they are cooperative. Sadly, we have forum members with families who are in stark denial about their loved one's celiac disease and are convinced that is is all in their heads, the latest fad illness.

Edited by trents

Share this post


Link to post
Share on other sites
15 hours ago, Rachel_17 said:

Vitamins seems like the way to go,

Celiac is a disease of malabsorption. There are seven vitamins and minerals that are directly affected by the shriveled villi. Once you start throwing up and and limiting your diet you are at risk for others. Eat lots of fruits and salads and raw vegetables. Potassium is the mineral most needed by our bodies (3510 mg/day according to WHO and 4700 mg/day according to FDA). Deficiency is endemic worldwide, but you must get it in food.  Dr. Joel Fuhrman has an excellent Nutritarian diet. Milk has lots of potassium, magnesium, iodine, vitamin A and others, and calories. Also helps keep you hydrated. Since you tolerate milk, 100% grass-fed full fat has a better lipid profile. I drink at least 2 to 4 glasses a day (640-1280 ml a day). 1100+ mg potassium. For many vitamins the tests do not reflect your intake, so it's best to track how much you actually eat/supplement.

" In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women."https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

Adults (19 to 64 years) need 3,500mg of potassium a day. You should be able to get all the potassium you need from your daily diet".https://www.nhs.uk/conditions/vitamins-and-minerals/others/.

As an infant, my son was put on Nutramigen infant formula for six months. As adults, it is a lot harder. 

Share this post


Link to post
Share on other sites

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
5 5