Why Your Gluten Symptoms Are Real (Even if Doctors Dismiss Them)

Text Carrie!

Have you ever been told your gluten symptoms are all in your head? Maybe a doctor brushed them off, or friends and family made you feel dramatic for needing to eat gluten-free. 

I want you to know this: you’re not crazy, and your symptoms are real. 

In today’s episode, I’ll share why gluten can cause so many different symptoms, why doctors sometimes dismiss them, and how to trust your body even when others don’t. Stick with me until the end, because I’ll share a simple way to advocate for yourself at the doctor’s office without feeling like you’re being difficult.

Come join us in our free Facebook Community, The Gluten Free Engineer. 

It’s a space where you can connect with others living gluten-free, ask questions, swap tips and recipes, and get support from people who truly get it. Whether you’re newly diagnosed or a seasoned gluten-free pro, you’ll feel right at home.

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Episode Transcript

Carrie (00:00):
Quick reminder before we get started on this episode.
This podcast is based on mypersonal experiences and isn't
medical advice.
Have you ever been told yourgluten symptoms are all in your
head?
Maybe a doctor brushed them offor friends and family have made
you feel dramatic for needingto eat gluten-free.
I want you to know this.
You're not crazy and yoursymptoms are real.

(00:21):
In today's episode, I'll sharewhy gluten causes so many
different symptoms, why doctorssometimes dismiss them, and how
to trust your body even whenothers don't.
Stick with me to the endbecause I'll share a simple way
to advocate for yourself withoutfeeling like you're being
difficult.
Welcome to the Gluten FreeEngineer Podcast.
I'm your host, Carrie Saunders.

(00:42):
In 2011, I was diagnosed withceliac disease, a moment that
changed everything.
But I was determined not to letit hold me back.
With my two engineeringdegrees, I set out to reverse
engineer the gluten-freelifestyle, breaking down
recipes, safety tips, travelhacks, and everything in between
to rebuild a life I love.
Whether you have celiacdisease, gluten intolerance, or

(01:04):
simply choose to livegluten-free, this podcast is for
you.
Join me each week as wesimplify the gluten-free
lifestyle, make it fun, andprove that you don't have to
miss out on anything.
Welcome back to the show.
Today we're talking about whyyour gluten symptoms are real,
even if doctors dismiss them.
And so let's start off withjust that fact.

(01:24):
Why are they real?
So gluten triggers immuneresponses in people with celiac
and gluten intolerance.
It's a legit reaction.
It is causing your immunesystem to go haywire.
It doesn't just cause stomachissues, it can affect the brain,
it can affect your nerves, itcan affect your skin, your
joints, your mood.
It can affect your wholesystem.

(01:47):
It's really wild how much itcan really affect everything.
And so science supports thesesymptoms, even if they look
unrelated.
There is so much scientificevidence now about how gluten
affects us when we're celiac orgluten intolerant, as well as
how much it affects us whenwe're neither of those and we

(02:07):
are being gluten-free because itmakes our bodies feel better.
It's just a scientific factwhen you get down to it, and you
can look up lectins and thingslike that if you really want to
dig into it a little further.
But there are lots of lectinsin gluten.
There are also certain proteinsin gluten that our bodies have
just not had time to adjust tobecause gluten and wheat is

(02:30):
newer, relatively speaking, toall the other foods that we eat
in our lives right now.
And we eat a lot more of itthan our ancestors did.
So then why do doctorssometimes dismiss it then?
There's a few different reasonswhy.
Medical training often focuseson classic celiac symptoms.
So diarrhea, weight loss,malnutrition type of issues.

(02:53):
But there's non-classicsymptoms as well: fatigue,
migraines, depression,infertility.
And they don't always fit intothat box.
They can cause so many issueswith our female organs and how
they work from a you knowfertility standpoint.
And I'm not sure too manypeople realize that.
And so sometimes doctors aren'ttrained to put these puzzle

(03:16):
pieces together.
I feel like they're gettingmuch better now than like, say,
when I tried to get diagnosedover 10 years ago, which was
even better than the 10 yearsprior to that.
But it's something that a lotof doctors aren't trained on as
well, especially if they're beenin practice for a while.
And also, IBS is often used asa catch-all diagnosis when

(03:37):
answers are unclear.
And really think about it.
This is something that drivesme a little bit crazy.
I don't know if you've noticedthis on the show, but IBS is a
catch-all term, like I justsaid, right?
But what drives me crazy aboutit is that simply that is his
catch-all term.
There is something, there'ssome reason that your bowels are

(03:58):
being irritable.
Like, so I feel like irritablebowel syndrome is just a way to
get out of keeping digging intowhat the true problem is.
I was diagnosed with IBS.
Let's see, I think it was about10 years before I got diagnosed
with celiac disease.
It was a it was quite a whilebefore, at least five to seven

(04:19):
years.
I'm trying to have a hard timeremembering exactly.
And I was so frustrated.
A gastroenterologist eventested me or diagnosed me as
that and just gave me somemedicine.
Didn't test me for celiacdisease.
I didn't know what celiacdisease was back then, but I
could have been diagnosedsooner.
I could have been feelingbetter sooner.
I could have probably had abetter third pregnancy because I

(04:41):
wasn't um, you know, I wouldhave known not to eat gluten and
I wasn't being malnourishedfrom one having celiac and two
being pregnant.
Uh so it was, it's just such afrustrating situation to me.
Um, and IBS can be otherthings.
It doesn't have to be celiacdisease or gluten intolerance.
It could be Crohn's, it couldbe so many other things, but I
feel like doctors sometimesdon't really become that

(05:04):
detective for you and theadvocate.
So sometimes we have toadvocate for ourselves.
This is the short version ofthis, and figure out and help
the doctors figure out what isgoing on because you know your
body best.
They're there to collect theinformation you give them.
So the more details of theinformation you give them, the
better off they're going to bein figuring out what's going on.

(05:26):
And then here's something Istruggled with validating the
experience.
At first, I wasn't actuallyofficially diagnosed as celiac,
and I didn't have a doctor'svalidation for what is going on
with my body then.
And I felt a little crazy,honestly, but I knew that every
time I ate gluten, I felt awful,like I felt really terrible.

(05:48):
So you sometimes don't need atest result or a doctor's
validation to know your body andto know that something affects
it and something makes you feelbad.
You know, I had to also figureout there's other foods that
make me feel feel bad.
Some of these tests are reallyhard to be accurate, and it's
not necessarily the doctor'sfault.
Like food intolerances can behard to be accurate.

(06:08):
Also, um, even food allergiescan be hard to be accurate.
I've been told by my ownallergists that those tests are
not always the accurate for somepeople.
And so we want to use oursymptoms as signals.
It's your body asking for help.
So pay attention to the signalsthat your body is giving you.
That's those symptoms.
For me, it was a lot of ummigraines, it was a lot of mood

(06:32):
swings that I was trying to, youknow, I was actually trying to
keep under control for the mostpart.
Um, my digestive swings backand forth.
There were so many things thatwas going on in my body, and my
body was screaming for helpafter, you know, 30 some years
of being undiagnosed.
And many people find relief inhealing once they trust their

(06:53):
instincts and remove gluten,once they really listen to their
body, like I felt so muchbetter.
And it helped me lead towardsfinding out that my kids had it
too.
Because I found out that I wasso sensitive and I started doing
research.
What is this?
And found that it's celiacdisease.
And that is, you know, then Irealized that family members can

(07:14):
have it too.
So that's how we startedtesting the kids.
So, how do we advocate forourselves?
Let's say that we feel like,you know, we have something
going on, it's not being fullydiagnosed, something going on
with our stomach, or we suspectit might be gluten.
I want you to write downsymptoms and patterns.
We want to write down foods andthe reactions to them.

(07:34):
Keep in mind, though, thateverybody is different, and
that's everybody and everybodyis different.
Um, the reaction to foods canlast any, can start anywhere
from like an hour or two to twodays.
So even if you don't get areaction immediately, that

(07:55):
doesn't mean there isn'tsomething wrong.
It really just depends upon ourbodies how fast and the other
things we're eating, how fastwe're going to react to certain
foods.
So keeping a long-term journalof what we're eating and how
we're reacting can really help.
Bring research or familyhistory to appointments when
necessary that can really helpyou out.

(08:17):
You can also ask for the fullceliac panel.
We have an episode about whatthose types of tests are, and
there's different ones of them.
So just not just a single test,as I talk about in that
episode, that can be prettyinaccurate for some people,
depending upon how your body is.
So ask for the full celiacpanel.
And it's okay to get a secondopinion or a third.

(08:39):
It took me, I'm trying tothink, at least two to three
doctors to get diagnosed withceliac disease.
Yes, I would say, yes, threedoctors at minimum for me to get
diagnosed with celiac disease.
So it's okay to get a secondopinion.
You know, just recently myfriend was having issues, and I
encouraged her because of mysituation.
She wouldn't necessarily havegluten issues, but she was

(09:01):
having some health issues, andshe was getting dismissed by
doctors.
And I told her, you know, youneed to get another opinion, and
she did, and she's starting toget on the right track there.
So give yourself permission toget that second opinion or third
opinion when you need to.
And then here's the strategythat helped me when most when I
felt I was being dismissed.

(09:22):
I started keeping a foodjournal.
I was literally only eatinggluten once a week.
It was a Friday afternoonlunch.
We would, I would splurge, andthat was my one go-to cheat meal
when I was working on eatingprimally, because with the
primal blueprint book, I've gotan episode on that too.
That's how I discovered thatwas the beginning stages of me

(09:44):
discovering I had celiac.
I was, he has an 80-20 rule.
80% of the time you eat umreally healthy and follow the
primal way, and then you know,you can have 20% of your week is
you can have like a littlecheat.
So my 20% was my lunch onFriday.
That was a simple thing to do.
Our office would go and getwonderful deli sandwiches.

(10:06):
I so miss them.
I need to recreate thosemyself.
I just haven't had a chance to.
And I was finding I was feelingterrible within a couple hours
after eating that, and then allweekend.
And then boom, on Monday, Iwould I would feel pretty good
again because I'd been eatingclean for like a bite, two and a
half days by then.
So I was able to see thatpattern because I was only

(10:27):
giving myself gluten once aweek.
So the fact that I was onlyeating gluten once a week really
helped nail it down to beinggluten that was causing my
issues.
I was way over it was way toomasked whenever I was eating it
consistently.
So when I could point to thoseconsistent patterns, it started
shifting the conversation.
It's a simple but powerful wayto advocate for yourself and

(10:49):
prove that what you'reexperiencing is very real.
Thank you for listening to thisepisode of the Gluten Free
Engineer.
If you found value in thisstory, please share it with
someone who might needencouragement on their own
gluten-free journey.
For more tips, recipes,resources, and even links to my
YouTube channel, head on over totheglutenfreengineer.com.

(11:10):
It's your one-stop hub to makegluten-free living simple, fun,
and full of flavor.
And don't forget to subscribeso you never miss out on an
episode.
And we will see you next week.
The Gluten Free EngineerPodcast is for informational and
entertainment purposes only.
I share my personal experiencesand stories about living with

(11:30):
celiac disease and navigating agluten free lifestyle.
This podcast does not providemedical advice.
Always consult with a qualifiedhealthcare professional for
medical questions, concerns, oradvice specific to your health.