Celiac, or simply gluten intolerance?

[Love-Newt]

Hi everyone, I'm new to this website and am confused as to my symptoms and some of my test results for celiac. Here's my story, sorry that it's kind of long. 

In May of 2014, , when I was 15 (I'm currently 17), I began having a really foggy brain. Unaware of my surroundings, getting confused easily, inability to focus, etc. This lasted for about a month, and after that I was having horrible respiratory problems. I'm a ballet dancer and I couldn't dance very much because of breathing problems and chest pain. This went on for a year with seeing different lung specialists, running lots of lung function tests, and taking all the asthma meds possible. Nothing ever worked, and after a lot of searching, I stumbled upon something suggesting going gluten free and seeing if that was causing my breathing problems. After 2 weeks of being gluten free, my symptoms were completely gone. I could breathe perfectly fine. I was gluten-free for a month when my Dr. suggested Celiac testing. I ate gluten for 2 weeks and did blood tests that came back negative. So I've been living as though I'm gluten intolerant since June/July 2015. I've become extremely sensitive to it. If my food touches too much gluten, and then I eat it, I have diarrhea, sometimes lasting up to a week of feeling sick. I've also had 2 stress fractures in my foot, and 1 fracture in my toe since June, and I think Celiac can lower bone density(?) Has anyone had similar symptoms? Should I get retested? I'd appreciate any advice I can get! Thanks

[SLLRunner]

Welcome, Love-Newt!

First of all, since you are underage is/are your parent/parents involved in your health concerns? If you have not done so yet, please share your concerns with the adult(2) in your family.

Since you had been gluten free and then ate gluten for two weeks only prior to your blood test, you might have gotten a false negative. In order to have accurate blood tests for celiac, the guideline is to consume gluten for several weeks prior to the tests, and plenty of it.

My situation is a lot like yours, in that eating gluten for one month made me feel a whole lot better. My fatigue, bloated feeling, gas, gurling in my tummy, itching, and fatigue. I talked to my doctor about this and we decided that it would indeed be a good idea to test for celiac. She told me to eat plenty of gluten for a month prior to the blood testing, so I am now doing a gluten challenge. This means I eat my homemade bread, wheat cereal for breakfast, any no processed food that is gluten free.  My decision is that whether the tests come back negative or positive I will be eating gluten free after all testing is complete because of how much better I feel. 

As for you--are you willing to do a gluten challenge prior to blood testing and to eat plenty of gluten until all testing is complete? 

Also, do you have other food intolerance? It is common with those who have celiac to be intolerant to other foods, often lactose. About 15 years ago, I discovered lactose intolerance, and about five or six years ago, soy sensitivity.

 

[Irene Joanne]

Getting retested sounds like a great idea- yes celiac can lower bone density. You should get check for some deficiencies too- calcium, iron, vitamin D and B12 for sure. 

 

[Love-Newt]

15 hours ago, SLLRunner said:

Welcome, Love-Newt!

First of all, since you are underage is/are your parent/parents involved in your health concerns? If you have not done so yet, please share your concerns with the adult(2) in your family.

Since you had been gluten free and then ate gluten for two weeks only prior to your blood test, you might have gotten a false negative. In order to have accurate blood tests for celiac, the guideline is to consume gluten for several weeks prior to the tests, and plenty of it.

My situation is a lot like yours, in that eating gluten for one month made me feel a whole lot better. My fatigue, bloated feeling, gas, gurling in my tummy, itching, and fatigue. I talked to my doctor about this and we decided that it would indeed be a good idea to test for celiac. She told me to eat plenty of gluten for a month prior to the blood testing, so I am now doing a gluten challenge. This means I eat my homemade bread, wheat cereal for breakfast, any no processed food that is gluten free.  My decision is that whether the tests come back negative or positive I will be eating gluten free after all testing is complete because of how much better I feel. 

As for you--are you willing to do a gluten challenge prior to blood testing and to eat plenty of gluten until all testing is complete? 

Also, do you have other food intolerance? It is common with those who have celiac to be intolerant to other foods, often lactose. About 15 years ago, I discovered lactose intolerance, and about five or six years ago, soy sensitivity.

 

So my parents are involved in my health concerns. My mom more so than my dad. She's wanting me to start taking charge and talk to my doctor about my Celiac concerns myself, which is totally fair, since I know what I'm worried about more so than she does. I don't have any other food intolerances, as far as I know. 

I've been thinking about doing a gluten challenge, but I'm very busy right now with prepping for a dance show, school work, and working, that I don't really have time to feel sick while eating gluten for a month. I'm considering doing a gluten challenge this summer. I was just looking for opinions from other people who might've had a similar experience as me, and it seems like you have! Thank you for your tips and advice!!

[Love-Newt]

14 hours ago, Irene Joanne said:

Getting retested sounds like a great idea- yes celiac can lower bone density. You should get check for some deficiencies too- calcium, iron, vitamin D and B12 for sure. 

 

Thank you for your advice! I've been tested for vitamin D deficiency, and I'm not definciant, but my counts were on the very low end of the "normal" scale. 

[SLLRunner]

Newt,

So glad you have the support of your mom in this, and that she is encouraging you to talk with the doctor! Believe me, a gluten challenge is no fun and a lot of people who have lived gluten free won't do it. I am just about ready to throw in the towel but will carry on. This is after being gluten free for only four weeks!

I am also considering food allergy testing as well, and have asked my doctor for a referral to an allergist.