Just diagnosed at 19, Celiac disease in college

[areed]

I have had problems with eating for a while. Initially, I was convinced I was just lactose intolerant. Many of the things causing me issues had dairy i.e. pasta, pizza, cake, etc. Therefore, I tried getting nondairy alternatives. It was not until this past winter that my sister suggested a gluten insensitivity. I immediately counted it out until I looked at the symptoms. Anemia, ulcers, fatigue, depression, bloating, etc. Therefore, I got tested. For years my bruises were denoted as a result of being vegetarian, not getting enough iron, or just straight up hormones. Throughout the entire process there was a great deal of skepticism on if anything was wrong with me. 

I finally tested positive about a month ago. I have gone almost twenty years of my life eating gluten. Therefore, this has been a tough transition. Being vegetarian made this difficult as well. My roommates are not the best at cleaning and no matter how hard I try to read labels, make all my food, and clean off pans and counters, I still continue to get symptoms. Worse, my symptoms are becoming more unbearable. Because I am new to being diagnosed, I was unsure if anyone had tips and tricks on how to get started and how to work past the frustration when getting glutened. This whole process has been so frustrating. Although my mood improves with a gluten free diet, that depression and guilt still haunts me every time I eat something cross contaminated. 

[Scott Adams]

Welcome to the forum!

I'm sure that others will chime in here, but the articles below might be helpful. Being vegetarian will create additional challenges for you, but many forum members have made the switch to a gluten-free diet, so it's definitely doable. 

 

 

[Wheatwacked]

On 4/27/2022 at 8:42 PM, areed said:

Being vegetarian made this difficult as well.

Any reason to continue now that you know what caused your eating issues. I ate gluten for 63 years. Talk about anger. In the meantime make sure to replenish your vitamins. Celiac Disease is one of malabsorption. Here is a chart that may help. The RDA is the daily amount that will ensure 95% of the population will not get the diseases the deciding committees decided were associated. For example vitamin D RDA only looks at rickets and soft bones. Vitamin D and the Immune System

 

[Parent of celiac teen]

On 4/27/2022 at 6:42 PM, areed said:

I have had problems with eating for a while. Initially, I was convinced I was just lactose intolerant. Many of the things causing me issues had dairy i.e. pasta, pizza, cake, etc. Therefore, I tried getting nondairy alternatives. It was not until this past winter that my sister suggested a gluten insensitivity. I immediately counted it out until I looked at the symptoms. Anemia, ulcers, fatigue, depression, bloating, etc. Therefore, I got tested. For years my bruises were denoted as a result of being vegetarian, not getting enough iron, or just straight up hormones. Throughout the entire process there was a great deal of skepticism on if anything was wrong with me. 

I finally tested positive about a month ago. I have gone almost twenty years of my life eating gluten. Therefore, this has been a tough transition. Being vegetarian made this difficult as well. My roommates are not the best at cleaning and no matter how hard I try to read labels, make all my food, and clean off pans and counters, I still continue to get symptoms. Worse, my symptoms are becoming more unbearable. Because I am new to being diagnosed, I was unsure if anyone had tips and tricks on how to get started and how to work past the frustration when getting glutened. This whole process has been so frustrating. Although my mood improves with a gluten free diet, that depression and guilt still haunts me every time I eat something cross contaminated. 

It can take a year to feel completely better. 

The things containing gluten my teen daughter missed in the beginning(she is a year gluten-free and feeling great-so have hope)

Plastic in retainers, make up(espeically lip stick and lip balm), oats(they must be labeled gluten-free otherwise there may be cross contamination)toothpaste(colgate is labeled gluten-free)envelopes(dont lick them) all condiments(may be cross contaminations in mustard unless labeled gluten-free)all hair care products(can get in your mouth in the shower or can be on your hands and then you eat without washing hands)lotion, deoderant(you can inadvertently scratch under your arm and then eat without washing hands) fabric softener , hand soap, laundry soap. As you see the list is endless. There is an app called "Skin safe" that we use and it lists all ingredients in products including gluten. We rely on it and it has been a huge help. Also, contact manufacturers of products and they will let you know if their producrt contain gluten. If you eat out and your server looks confused when you ask about cross contamination then that is probably not a good place to eat  

Check all labels for the gluten-free label and buy certified gluten-free for all products when possible. 

My daughter's symptoms were severe-debilitating joint pain, headaches, anxiety, sleeplessness extreme fatigue, brain fog. She is feeling so good now and is a different person.  

Good luck💙💕❤️It will get better!

[areed]

On 4/28/2022 at 11:41 AM, Scott Adams said:

Welcome to the forum!

I'm sure that others will chime in here, but the articles below might be helpful. Being vegetarian will create additional challenges for you, but many forum members have made the switch to a gluten-free diet, so it's definitely doable. 

 

 

Thank you! I will definitely read up on these. 

On 4/29/2022 at 12:48 AM, Wheatwacked said:

Any reason to continue now that you know what caused your eating issues. I ate gluten for 63 years. Talk about anger. In the meantime make sure to replenish your vitamins. Celiac Disease is one of malabsorption. Here is a chart that may help. The RDA is the daily amount that will ensure 95% of the population will not get the diseases the deciding committees decided were associated. For example vitamin D RDA only looks at rickets and soft bones. Vitamin D and the Immune System

 

Thank you, I have gotten a few blood panels done, but I am definitely due for another. I will check it out. 

3 hours ago, Parent of celiac teen said:

It can take a year to feel completely better. 

The things containing gluten my teen daughter missed in the beginning(she is a year gluten-free and feeling great-so have hope)

Plastic in retainers, make up(espeically lip stick and lip balm), oats(they must be labeled gluten-free otherwise there may be cross contamination)toothpaste(colgate is labeled gluten-free)envelopes(dont lick them) all condiments(may be cross contaminations in mustard unless labeled gluten-free)all hair care products(can get in your mouth in the shower or can be on your hands and then you eat without washing hands)lotion, deoderant(you can inadvertently scratch under your arm and then eat without washing hands) fabric softener , hand soap, laundry soap. As you see the list is endless. There is an app called "Skin safe" that we use and it lists all ingredients in products including gluten. We rely on it and it has been a huge help. Also, contact manufacturers of products and they will let you know if their producrt contain gluten. If you eat out and your server looks confused when you ask about cross contamination then that is probably not a good place to eat  

Check all labels for the gluten-free label and buy certified gluten-free for all products when possible. 

My daughter's symptoms were severe-debilitating joint pain, headaches, anxiety, sleeplessness extreme fatigue, brain fog. She is feeling so good now and is a different person.  

Good luck💙💕❤️It will get better!

Thank you so much, this has been very helpful. I didn't even think to check cosmetics. I will do that ASAP, I have been so focused on food and cross contamination. I am hopeful it gets better SOON haha.