not showing symptoms

[magan baker]

Hello! 

I’m 16 years old and i was diagnosed with celiac when i was 7 years old. I had major stomach cramps and my parents took me to get blood work and that’s when they told both me and my dad we were celiac. I went on a gluten free diet for about 5 years before i started to rebel and eat gluten. I didn’t see any downside to this as i wasn’t feeling the symptoms anymore. My iron levels are extremely low and i do tend to sleep more than your average human but that didn’t really matter to me, as long as i could eat gluten i was fine. I used to take 2 iron pills a day for three months way over the normal amount for a 16 year old. My iron levels didn’t go up, if anything it went down. I also don’t tend to eat a lot of meat, beans, or any form of protein really so i think this is definitely an added in factor. I was wondering if there was anything i should do? I keep looking things up on google but the answers freak me out. They all say cancer, or some sort of serious stomach issue. I’d appreciate any help or input you could give me. Thank you.

[cristiana]

Dear Magan

Hello to you and welcome to the forum!

Have you spoken to your own family doctor about your concerns? It is important to do this as unfortunately Dr Google is a most unreliable doctor to visit at times like these, as I've learned to my cost:  I'm three times your age and some of the things Dr Google has diagnosed me with over the years have kept me up at night more times than I care to remember. NOT good!   

But well done for now wanting to take action to address the situation! The great news is that if you adopt a strict gluten free diet again, it is very likely your iron issue should slowly start to resolve.

As you may know, the problem is when we celiacs eat gluten, damage is done to the villi in our small intestines which means we are unable to absorb all the nutrients from the food we eat.  This includes iron, but it can also mean there is a whole host of other key minerals and vitamins that we won't be absorbing from our diet.  Even low levels of gluten consumption, like the occasional cookie, will continue to damage our guts and stop us absorbing all this good stuff efficiently. Eventually, this can take a toll on our health.

That said,  there is something else to bear in mind;  for us girls there is another factor that can be contributing to anemia: periods.  So you may well find that that is part of your problem too.  I've suffered with low iron levels for years with undiagnosed celiac disease but latterly heavy periods have also caused anemia, despite my adopting a strict gluten free diet.  So be mindful of this, too.  You could be dealing with both contributing factors.

So, as I say, do speak to your doctor with your concerns.  If you are supplementing, do so under their supervision as is important that your iron is regularly monitored so that dosage can be tweaked lower or higher if necessary and once you are healed, perhaps stopped altogether.  This monitoring is important as iron can be dangerous if levels build up beyond a certain point in the body.

Who do you live with - are you still at home with your parents, or at college?  If you can get the people you live with to support you, you will find things so much easier.  Together, look at  at all the sneaky ways gluten might still be coming into your diet (shared toasters, chopping boards with crumbs on them, shared butter with crumbs...) as well as the more obvious ones (a McDonalds burger!)

Here's a link that leads to a thread that will help you tighten up your gluten free diet.   Do read it, and perhaps show it to whoever you share your home with. 

I hope some of this helps.  Please come back to us if you have any questions whatsoever. 

Cristiana

 

 

 

Edited September 10, 2021 by cristiana

[trents]

magan, any particular reason you don't eat much protein?

Some people have a form of anemia called "pernicious" anemia in which their gut does not produce something called "intrinsic factor." Intrinsic factor is necessary for the assimilation of vitamin B12 which in turn is necessary for the assimilation of iron. If someone has pernicious anemia it doesn't matter how much iron they supplement with it will not be absorbed. Neither do B12 supplements help as they aren't being absorbed either which is really the root of the problem. The only effective remedy is regular B12 injections.

Having said that, even if you don't have pernicious anemia, it is difficult to get enough iron from a plant-based diet and nearly impossible to get B12 from a plant-based diet. The only vegetable sources of B12 are some fermented soy products. Red meats are rich in heme iron (the most useable form) and in B12. 

Many people with celiac disease are "silent" celiacs. That means they have little or no GI distress or discomfort but all the while the damage is still happening to their gut villi as they continue to consume gluten. And, intrinsic factor is produced at the tips of the villi. I've been corrected here so let me edit this post. Intrinsic factor is produced in the gastric parietal cells which are in the stomach.

Edited September 10, 2021 by trents

[Scott Adams]

Welcome Megan! If you have celiac disease but haven't been on a gluten-free diet, then the best answer if for you to go 100% gluten-free for life, as this will likely resolve your anemia issues, as well as many other potential health issues that you may face. I have a 16 year old daughter, so I do understand the peer pressure aspect of this disease, but your long-term health will hopefully be enough motivation for you to overcome any aversion that you may have for the gluten-free diet.

[AlwaysLearning]

While in hindsight, I had symptoms of celiac all of my life, it wasn't until I was in my 20s that I started to experience the weight loss. In my 30s, things got worse, but I was in my 40s before my digestive system just stopped working completely. The damage does get worse over time and as you get older, your body is going to be worse at masking.

So yes, it is entirely possible that you feel fine while consuming gluten. But that does not mean that damage is not being done due to malnourishment, nor that you will continue to feel fine indefinitely.

So I would start to prepare yourself mentally for your future gluten free life. I understand that it will be incredibly difficult to tackle that challenge in your teen years, or even your 20s when drinking beer seems to be at the center of every social interaction.

But even if you don't go completely gluten free now, I would at least try to go gluten light. It is pretty easy to avoid the worst gluten culprits like pasta or bread. Yes, you'll need to find an alternate solution when everyone else is eating pizza. But even a baby step on the road to being completely gluten free is a step in the right direction. Every bite of gluten that you don't eat is damage that is not being done to your body. 

You mentioned napping frequently. One of the most debilitating symptoms I had before going gluten free was insomnia. I didn't even realize I had it because it had been ongoing since before I could remember. It always took me an hour to fall asleep after I went to bed, even as a kid. Throughout adult my life, I wondered why I seemed to be more exhausted than others, no matter how early I went to bed. But after going gluten free, my insomnia went away completely! Now it takes about 1-2 minutes for me to fall asleep. It is really wonderful. It is improvements like this that will make it easier to go gluten free. 

I use this example to illustrate a point. I would not presume that you are 100% symptom free. It is more likely that you are experiencing some symptoms, but have not yet realized that they are not normal. Even if you don't go so far as to start keeping a food/symptom journal where you keep track of everything you eat and your mood or aches and pains, I would start making a mental note of how you feel and what you ate. Any time you feel out of sorts, think about what you've had to eat in the past 24 hours … in the past week.

Starting to notice that there are connections between what you eat and how you feel is going to be a great motivator for going (and staying) gluten free.

While I'm not going to sit here and tell you that you have to go gluten free now, knowing how difficult it would be to try to be gluten free while still in school, I will say that I wish I had known my diagnosis sooner. If I could go back to being 16 and go gluten free then, I suspect I could have avoided a ton of health problems that had major negative affects on my life.

The fact that you came to the forum and made a post tells me that you have already taken a step in the gluten-free direction, even if you're just questioning. Make sure to come back again for moral support and encouragement ... whenever you need it.


 

[trents]

I think we scared Magan off.