Self diagnosed for gluten intolerant

[Glutenfreesuriname]

Hi Celiac community, my first post after joining 

let me begin with this, I am from Suriname a country where most doctors here don’t even know enough about celiac. 
So in my younger years as a kid I always could not keep my stools in and when I was at school I always needed to go to the toilet, and all the other kids never went so often as I did and I found that really awkward that I was the only one that needed to go. 2018-2019 at the age of 28 I began to have a lot of abdominal pain (ride side abdomen)
but everybody told me that I was stressed and it was just anxiety.

A part of that was true that I was stressed and was also getting random anxiety attacks but the pain was always there and that was feeding my anxiety attacks more. The anxiety became so extreme it gave me a seizure and ended up in the hospital, where the FIRST and only young doctor (thank god) that was still in her learning phase told me when looking at my blood test that she thinks I have coeliac. I thought o what is that? Never ever heard of that So I googled it. 
So from there I started my gluten free journey, it took me 3 years to understand how and where I could still get contaminated with gluten. 

In those 3 years while still having abdominal pain even a lot of back pain! I went to other doctors and non of them could steer me in the right direction, all of them wanted me to get tested for other things like kidney problems etc and I did and all came out negative and when I talked to them about gluten they made it more confusing for me. So I was getting tired of going to the doctor and did all research by my self! 
A year ago I started to get on the right track like feeling good for 1 month and falling back to pain, but the reason was because of eating at a restaurant even when asked if its gluten free (the people in restaurant did not 100% know what is gluten) and also I could not digest lactose that was giving me problems also

so now I only eat at home or 1 or 2 restaurants in my country that I know of having a few gluten free dishes And I am happy with that!

I started to hit the gym because I feel more energy now I sleep happier, wake up happy, no anxiety, no more right side abdominal pain and no back pain!! 

But I have one problem now, is it normal that going gluten free that I lose weight? 
Sometimes I get scared all the things the doctors where telling me and now I lose weight, but I have no pains anymore because of going gluten free and lactose free. I don’t know who I can talk to about my symptoms and I’m glad I have found this website so I can ask people that could relate with my symptoms

If going gluten free and losing weight is normal, how can I get some weight back? While still eating all organic not to much oily or processed food

Groetjes from Sweet Sranang 🇸🇷❤️

 

[trents]

Welcome to the forum, Glutenfreesuriname! I think you are the first person from Suriname to join this forum in the years I have been participating on it.

Seems like you are on the right track with your gluten free diet. It is not uncommon for people to lose weight on the gluten-free diet as it eliminates a major source of calories for most people. Have you dropped so much weight that you are unhealthily thin? Are you a vegan or a vegetarian? What is your height and weight? How many grams of protein and how many calories are you consuming daily? What vitamin and mineral supplements are you taking? The damage to the villi of the small bowel caused by celiac disease reduces the efficiency with with nutrients are absorbed from our diet. It can take two years or more for the villi to completely heal and to begin absorbing nutrients normally. That's why we here on the forum customarily recommend vitamin and mineral supplementation to those for who have been diagnosed with celiac disease. What is your age?

This also may help: 

 

[Scott Adams]

Welcome, and I was also wondering how often you are going the gym and how long do you work out? Generally speaking you'll need to increase your calorie intake, especially protein, if you work out often.

[Glutenfreesuriname]

2 hours ago, trents said:

Welcome to the forum, Glutenfreesuriname! I think you are the first person from Suriname to join this forum in the years I have been participating on it.

Seems like you are on the right track with your gluten free diet. It is not uncommon for people to lose weight on the gluten-free diet as it eliminates a major source of calories for most people. Have you dropped so much weight that you are unhealthily thin? Are you a vegan or a vegetarian? What is your height and weight? How many grams of protein and how many calories are you consuming daily? What vitamin and mineral supplements are you taking? The damage to the villi of the small bowel caused by celiac disease reduces the efficiency with with nutrients are absorbed from our diet. It can take two years or more for the villi to completely heal and to begin absorbing nutrients normally. That's why we here on the forum customarily recommend vitamin and mineral supplementation to those for who have been diagnosed with celiac disease. What is your age?

This also may help: 

 

Yes it is possible that I’m the first here in this forum from my country because celiac is not widely known in my country

to answer your questions. 
no I am not unhealthy thin my close friends are saying thats the way I should look like but others that don’t see me so often always ask if everything is okay with my health and I answer them that I’m on a gluten free diet but yeah they don’t know what I’m talking about haha.

I eat veggie maybe once or a week on and off. 
I don’t know how many grams proteins and calories I get in daily I never monitored that.  
Not taking any vitamines or supplements at the moment, would it help gain the weight I am looking for?

 
My height is 1.68m or 5.5ft? Yes I am asian born and living in Suriname 
Weight is 55kg or 121lbs but 2 months ago I weight at 60kg I would be happy to be at least 60kg

will check the link out thanks! 

1 hour ago, Scott Adams said:

Welcome, and I was also wondering how often you are going the gym and how long do you work out? Generally speaking you'll need to increase your calorie intake, especially protein, if you work out often.

Thanks brother, I visit the gym 3 times a week, what way you recommend for protein? I’m also lactose intolerant thats why I ask   

[trents]

Do you have access to lactose free dairy products or have you tried the "lactaid" additives that supposedly break down the lactose in milk? Also, I believe aged cheeses are lower in lactose. Lactose is the sugar component of milk. If you use whey protein powder to make a shake you would get the high quality protein component of dairy without the lactose. I would recommend at least 100gms of protein per day. Meat, fish and eggs are also excellent sources of protein and are high in other nutrients as well. I would suggest aiming for 3000 calories per day. Fats and oils are concentrated sources of calories and often have other nutritional benefits. So, nuts are an excellent choice for calorie concentration and vitamins as well as long as you don't have nut allergies. Nuts are also moderately good sources of protein. You really should start tracking calories and protein to see where you are at.

Vitamin and mineral supplements will not directly cause weight gain but may help indirectly by correcting some deficiencies that affect metabolism.

[Glutenfreesuriname]

1 hour ago, trents said:

Do you have access to lactose free dairy products or have you tried the "lactaid" additives that supposedly break down the lactose in milk? Also, I believe aged cheeses are lower in lactose. Lactose is the sugar component of milk. If you use whey protein powder to make a shake you would get the high quality protein component of dairy without the lactose. I would recommend at least 100gms of protein per day. Meat, fish and eggs are also excellent sources of protein and are high in other nutrients as well. I would suggest aiming for 3000 calories per day. Fats and oils are concentrated sources of calories and often have other nutritional benefits. So, nuts are an excellent choice for calorie concentration and vitamins as well as long as you don't have nut allergies. Nuts are also moderately good sources of protein. You really should start tracking calories and protein to see where you are at.

Vitamin and mineral supplements will not directly cause weight gain but may help indirectly by correcting some deficiencies that affect metabolism.

Yes we do have access to lactaid products and yes I was looking at protein powder shakes but did not think about using them yet because I some times read on the label they have lactose and was scared to have some bloating again, I will take my time to see what brands I could consume. 
Okay thanks you will be trying to get to know my calorie uptake and will be aiming for the 3000 calories per day this month. 
thanks again! 

[JD-New to Celiac]

5 hours ago, Glutenfreesuriname said:

Yes we do have access to lactaid products and yes I was looking at protein powder shakes but did not think about using them yet because I some times read on the label they have lactose and was scared to have some bloating again, I will take my time to see what brands I could consume. 
Okay thanks you will be trying to get to know my calorie uptake and will be aiming for the 3000 calories per day this month. 
thanks again! 

In addition to a gluten free diet I am allergic to dairy, soy, eggs, fish, oats and shellfish. That does not leave many options. I typically just look for gluten free vegan options but must watch they do not sneak in soy. In the US is a brand known as Naked and I go with Naked Pea as my go to for a protein supplement. There are not many protein options for me as I also cannot digest meat. And, yes, like you I have a very difficult time putting on weight. I do eat the Naked Pea five times a day along with veggies and fruit. I can do peanut butter as well. I get the Naked Pea on Amazon. I am not sure if that is an option for you. It has basically no flavor and no sugar. I do add a small amount of cane sugar to it. I was on another brand of protein supplement but recently developed SIBO and that brand aggravated the condition. That left me with no protein options until I found this pea protein. Like the others have said I also take a number of vitamins and other supplements. I truly look unwell all the time. Friends and family worry but I do eat! It just doesn't look like I do. I cannot build muscle. Even with regular exercise.

[trents]

5 minutes ago, JD-New to Celiac said:

In addition to a gluten free diet I am allergic to dairy, soy, eggs, fish, oats and shellfish. That does not leave many options. I typically just look for gluten free vegan options but must watch they do not sneak in soy. In the US is a brand known as Naked and I go with Naked Pea as my go to for a protein supplement. There are not many protein options for me as I also cannot digest meat. And, yes, like you I have a very difficult time putting on weight. I do eat the Naked Pea five times a day along with veggies and fruit. I can do peanut butter as well. I get the Naked Pea on Amazon. I am not sure if that is an option for you. It has basically no flavor and no sugar. I do add a small amount of cane sugar to it. I was on another brand of protein supplement but recently developed SIBO and that brand aggravated the condition. That left me with no protein options until I found this pea protein. Like the others have said I also take a number of vitamins and other supplements. I truly look unwell all the time. Friends and family worry but I do eat! It just doesn't look like I do. I cannot build muscle. Even with regular exercise.

If you can't handle animal based-proteins I certainly hope you are using B12 supplements.

[Scott Adams]

14 hours ago, JD-New to Celiac said:

In addition to a gluten free diet I am allergic to dairy, soy, eggs, fish, oats and shellfish. That does not leave many options. I typically just look for gluten free vegan options but must watch they do not sneak in soy. In the US is a brand known as Naked and I go with Naked Pea as my go to for a protein supplement. There are not many protein options for me as I also cannot digest meat. And, yes, like you I have a very difficult time putting on weight. I do eat the Naked Pea five times a day along with veggies and fruit. I can do peanut butter as well. I get the Naked Pea on Amazon. I am not sure if that is an option for you. It has basically no flavor and no sugar. I do add a small amount of cane sugar to it. I was on another brand of protein supplement but recently developed SIBO and that brand aggravated the condition. That left me with no protein options until I found this pea protein. Like the others have said I also take a number of vitamins and other supplements. I truly look unwell all the time. Friends and family worry but I do eat! It just doesn't look like I do. I cannot build muscle. Even with regular exercise.

If you are allergic to chicken eggs consider trying duck eggs. They can be found in most Asian supermarkets (be sure they are fresh, and do not have a red marker mark on them--those include a developed embryo), or sometimes at farmer's markets.

[JD-New to Celiac]

20 hours ago, trents said:

If you can't handle animal based-proteins I certainly hope you are using B12 supplements.

Yes, Trents, I do regularly take a whole list of vitamins and supplements. One member suggested a certain form of Thiamine HCI along with magnesium glycerinate and I take that along with a b-complex that a ENT doctor suggested I take (I have pulsatile tinnitus - he felt that might help). I am honestly not happy I have to pea protein but meat truly makes me sick. I am hoping in time I may heal enough to tolerate meat but for now I have to have some form of protein and plant protein is all I can manage. Thank you though for the reply.

[Beverage]

I dropped 30 lbs in a month when I first started gluten free. It was all water and inflammation, underneath I was like a skeleton. My doctor said some Celiacs are overweight like that, he had a few patients that were over 300 lbs. and they went to normal weight after going gluten free. 

As I felt better and could do more, and exercise, I have added back 20 lbs., but it's muscle.