Just Diagnosed

[codyf]

Hey,

I was just diagnosed with Celiac disease earlier today. I'm thrilled to finally have a diagnosis, as similar to many of you I had been suffering from a variety of symptoms and I was going crazy trying to figure out what was causing it. I am a 19 year old college sophomore, and I'm excited to hopefully get back to living my life symptom-free again. I have a couple of questions though.

1) While I know many people suffering from Celiac get headaches, mine were a little different. I've had headaches my whole life, but as my symptoms worsened, the headaches began to change. Whenever I would exercise, especially lifting, I would get an intense head pressure/pain after around 15 minutes, and if I tried to continue through it I would eventually get dizzy and throw up. I spent a little bit of time looking through other posts on this forum, but I couldn't find anyone with this symptom. I was wondering if anyone else experienced this, and how long it took you to be able to exercise normally again after going gluten-free? This is really important to me, as I play collegiate soccer and we are supposed to start practicing again next week. I already told my coach I wouldn't be able to practice the first week, but I'm hoping to get back as quickly as possible.

2) Looking through some of the other posts on the forum, I noticed many of you recommended not eating dairy for a while after first being diagnosed, or at least until you feel fully healthy again. I was wondering why this is? I'm a very picky eater, and I was hoping to rely on a lot of dairy initially as I attempt to adjust to the new diet as I have always really liked dairy, especially milk. 

Thank you guys for your help.

[cyclinglady]

You might be able to consume dairy without any problems.  The villi tips normally releases the enzymes to digest lactose.  When the villi are very damaged, no enzymes.  Makes for bad GI symptoms.  But you might not have much damage.  Dairy could be fine for you.  I was lactose intolerant, but now I can consume a lot of dairy.  My daughter, your age, can consume dairy without issue.  But that can change when we get gluten exposures.  At least it is just temporary for us.    You just have to test it out.  
 

I think you need to talk to your doctor about a complete work up that includes a CBC and a vitamin and mineral panel to check for deficiencies.  That is the standard of care if your doctor does not agree.  Google it.   Your doctor or GI should give you the approval to do soccer.  Do not make this decision yourself or let your coach decide.  

Two months after my diagnosis, I had spontaneous fractures in my vertebrae.  That was horrifying as I am very active.  Luckily, with time I recovered and have not had anymore fractures.  This was due to osteoporosis which occurs because you are not able to absorb things like calcium and vitamin D and other minerals and nutrients for bone health.  
 

Please do some research on celiac disease.  You can heal, but it takes time.  
 

 

[cyclinglady]

Oh, where do you get your food?  Dorm food is can be a gluten nightmare.  Think about informing the disabilities office on campus.   You can get things like access to a kitchen or more time on tests in case you have to run to the bathroom.  Maybe a refund on your dorm food too if they can not keep you safe.  

[trents]

Cody, now the biggest challenge for you comes. Namely, getting educated on the myriad of unsuspecting places where gluten (wheat, barley, rye and for some, even oats) shows up in the food supply. For instance, most canned soups will have wheat starch as a thickener. Most soy sauces will have wheat as a listed ingredient. Medications and supplements may use wheat starch as a filler. Spices can use wheat as a texturing agent. Many corn and rice breakfast cereals will have "barley malt flavoring" as an ingredient. It's not just cutting out the main sources of gluten like bread, pasta and pizza. It's totally eliminating it from your diet, even traces of it. You may feel better by eliminating the main sources of gluten from your diet but damage to your small bowel villi may still be happening if your are consuming even small amounts of gluten. 

The other thing I wanted to say is, make sure there isn't something else causing those exercise headaches. There is a tendency for people, once diagnosed with Celiac Disease, to blame all health issues on gluten. That isn't realistic.

[codyf]

2 hours ago, cyclinglady said:

Oh, where do you get your food?  Dorm food is can be a gluten nightmare.  Think about informing the disabilities office on campus.   You can get things like access to a kitchen or more time on tests in case you have to run to the bathroom.  Maybe a refund on your dorm food too if they can not keep you safe.  

Thanks for the ideas! Luckily I live in an apartment off campus, so I have my own kitchen.

[codyf]

1 hour ago, trents said:

Cody, now the biggest challenge for you comes. Namely, getting educated on the myriad of unsuspecting places where gluten (wheat, barley, rye and for some, even oats) shows up in the food supply. For instance, most canned soups will have wheat starch as a thickener. Most soy sauces will have wheat as a listed ingredient. Medications and supplements may use wheat starch as a filler. Spices can use wheat as a texturing agent. Many corn and rice breakfast cereals will have "barley malt flavoring" as an ingredient. It's not just cutting out the main sources of gluten like bread, pasta and pizza. It's totally eliminating it from your diet, even traces of it. You may feel better by eliminating the main sources of gluten from your diet but damage to your small bowel villi may still be happening if your are consuming even small amounts of gluten. 

The other thing I wanted to say is, make sure there isn't something else causing those exercise headaches. There is a tendency for people, once diagnosed with Celiac Disease, to blame all health issues on gluten. That isn't realistic.

Agreed. I'm going to completely clean out my pantry and do a lot of research. I'll try to start with a somewhat consistent rotation in what I eat everyday. Going to eat a lot of red meat and and chicken over this next month for sure!

The reason I think the headaches are caused by Celiac is I was pretty healthy before all my symptoms began occurring around the same time towards the beginning of quarantine. Also, I'm really hoping they are a result of Celiac so I don't have to go through the whole process of figuring out what could possibly be causing them. 

[DJFL77I]

On 10/15/2020 at 8:05 PM, codyf said:

Whenever I would exercise, especially lifting, I would get an intense head pressure/pain after around 15 minutes, and if I tried to continue through it I would eventually get dizzy and throw up.

if you're body goes into shock from too much over exertion you will throw up

[GFinDC]

Hi Cody,

I used to throw up but not from exercise.  GI reactions were the problem.  Celiac disease can cause plenty of nausea and other symptoms.

Your idea of rotating foods in your diet is a good one.  One of the side effects of celiac disease is some people become intolerant to other foods besides gluten.  It seems like that tends to happen with foods we eat often.  So doing a rotation diet may help avoid that.  Celiac disease irritates the gut lining and that could be the reason frequently eaten foods may become problems.  The body can start to link them with the irritated gut lining.  So something we eat every day is more likely to become a problem food.

You'll need some time to learn the gluten-free diet and also build up nutrient levels again.  Exercise may work better as a moderate activity rather than as an organized sport for you.  You may have a lot of GI symptoms over the next year and not feel like doing sports.

Edited October 18, 2020 by GFinDC