September 11, 2025 • 19 mins
So let’s talk about that dreaded negative test result. You walk into the doctor’s office with a list of symptoms, maybe even a family history of celiac. They run a blood test or maybe even a biopsy. The result comes back negative. The doctor says, “Good news, you don’t have celiac disease.”
But deep down, you know something isn’t right. You still feel terrible when you eat bread, pasta, or pizza. You might even think, “Am I imagining this?” Spoiler: you’re not. Here are five reasons why your test could be negative while you’re still struggling.
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Carrie Saunders (00:00):
Quick reminder before we get started on this
episode.
This podcast is based on mypersonal experiences and isn't
medical advice.
So let's talk about the dreadednegative test result.
You walk into the doctor'soffice with a list of symptoms,
maybe even a family history ofceliac.
They run a blood test or maybeeven a biopsy.
(00:20):
The result comes back negativeand the doctor says good news,
you don't have celiac disease.
But deep down, you knowsomething isn't right.
You still feel terrible whenyou eat gluten with its bread,
pasta or pizza, and you mighteven think am I imagining this?
But you're likely not imaginingthis.
We are going to be giving inthis episode five reasons your
(00:41):
test could be negative and whyyou're still struggling.
So let's get to it.
Welcome to the Gluten-FreeEngineer podcast.
I'm your host, Carrie Saunders.
In 2011, I was diagnosed withceliac disease, a moment that
changed everything, but I wasdetermined not to let it hold me
back.
With my two engineering degrees, I set out to reverse engineer
(01:02):
the gluten-free lifestyle,breaking down recipes, safety
tips, travel hacks andeverything in between to rebuild
a life I love.
Whether you have celiac disease, gluten intolerance or simply
choose to live gluten-free, thispodcast is for you.
Join me each week as wesimplify the gluten-free
lifestyle, make it fun and provethat you don't have to miss out
(01:22):
on anything.
Welcome back to the podcast.
Today we're talking about whatto do if you got a negative
celiac test result but yet youstill feel terrible, and some
common reasons as to why youmight still feel terrible and
why you might have gotten afalse negative, which could be
the potential here.
So one reason that you may havegotten a false negative and
(01:43):
you're actually really celiacand don't know it is that you
went gluten-free too early andblood tests only work if
gluten's in your system, as wellas biopsy tests only work if
gluten's in your system.
So these core tests only workif you've been eating gluten,
for they recommend at least twoto three months for an accurate
(02:05):
test.
The antibodies they measurewhen they're doing the blood
test show up as a reaction togluten.
So if you've already cut backgluten or eliminated gluten
before testing, your body maynot have had enough of a
reaction for the test to detectit.
Doctors call this a glutenchallenge, meaning you need to
(02:26):
be eating gluten regularly formonths before taking the test
for results to be accurate, andsome doctors will say several
weeks.
But honestly, in a lot of theresearch I've done, that may not
be enough.
And most of it says severalmonths.
And this is where I went wrong.
I accidentally went off gluten,trying to lose weight.
(02:47):
If you know my origin story, Iread the primal blueprint book
and decided to use it to help melose weight because it made
sense from a scientificstandpoint that if I controlled
my blood sugars by eating lessprocessed foods then I would be
able to lose weight and goingoff of the gluten.
(03:07):
Because I wasn't eatingprocessed foods, because that's
where most of the gluten is.
I had been off of it forseveral months and I asked my
doctor.
I said, hey, I think I mighthave a celiac disease, can we do
a test?
And she's like sure.
And back then that doctor Ieven asked her.
I said, well, I haven't beeneating gluten for a few months.
Will this test still beaccurate?
(03:29):
Because I'd already read thatit may not be accurate and she
had no idea.
So sometimes doctors don't evenknow.
She's like, oh no, it'll beaccurate.
Well, it actually wasn'taccurate.
I find out a few years later.
So make sure that you have beenon gluten for many months
before you get tested.
And if you've already gone offgluten, then there's some other
(03:52):
things that you can do instead.
So talk to your doctor aboutthat, because going back on
gluten sometimes it's just notan option for us.
I know they wanted to do thatto our oldest kid who got marked
for celiac Justin B Shore andwe just knew that we couldn't do
it because his primary doctortold him to go off gluten and he
(04:13):
was feeling so much better andwe didn't want to do that to him
.
We didn't want to make himmiserable.
And then reason number two isthe wrong test was ordered.
So I want to dig a littledeeper here, because this is one
of the most common reasonspeople get a negative test when
something is still going on.
When most doctors say they'rerunning a celiac test, what they
(04:35):
usually mean is the tissuetransglutamase antibody test.
That is a mouthful IJA type, orit's also just the acronym, is
TTG-IGA for short.
It's the most common onebecause it's inexpensive and
it's widely available and it's avery sensitive test for picking
up celiac disease.
(04:56):
But the problem is, if you havesomething called an IGA
deficiency, which is more commonthan most people realize, this
TTG-IgA test won't work for you.
It could come back negative,even if you do have celiac
disease.
That's why doctors should alsoorder a total serum IgA test at
(05:20):
the same time.
So basically, that checkswhether your body even makes
enough IGA for the main test tobe valid, and a lot of family
doctors and your primary doctorsdo not know this.
This is not something they'venecessarily been educated in.
So most of the time when youwant to be testing for celiac
(05:41):
disease, I highly recommend thatyou ask for a referral to a
gastroenterologist, somebody whospecializes in this area of the
body.
And then there are also twoother tests that sometimes get
skipped Endomysial Antibody IgATest, or EMA-IGA for short.
(06:01):
This one is extremely specificmeaning.
If it's positive, it almostalways points to celiac.
There are also two other teststhat sometimes get skipped the
endomysial antibody IgA test, orEMA-IGA.
This one is extremely specific,meaning if it's positive, it
(06:22):
almost always points to celiac.
And then demyated Gladion,peptide antibodies or DGP tests.
Some of these are really hardto read, both the IgA and IgG on
these.
These can be especially helpfulin children under two or in
people who don't produce enoughIgA and IgG on these.
These can be especially helpfulin children under two or in
people who don't produce enoughIgA.
(06:43):
Now, obviously, these are thetests that are really common,
thati was able to research andfind on the internet.
So I and ones that have been,you know, used on us as well,
some, some of them have, some ofthem haven't.
So I want to make sure that youare, you know, working with
your doctor, as always, you know, because these tests may change
, the availability of them mightchange, there may be new
(07:04):
research that comes out andcomes up with even better tests.
So make sure you're doingcurrent research when you are
doing these.
But I just want to make surethat our listeners recognize
that there are more than oneblood tests to be done to double
check for celiac.
Now, some of these aren't donebecause they're more expensive.
Like I said, some of those onthe earlier side that I was
(07:25):
talking about are much cheaperand more readily available.
So work with your doctor to seewhich ones are appropriate for
you, and if your doctor only ranthe TTG-IGA test by itself, you
may have not had the fullpicture.
That one's definitely one tonote, especially if they didn't
do the total IGA with it, and insome cases, the EMA and the DGP
(07:50):
need to be used as well, andwithout those it's very possible
to get a negative result thatdoesn't reflect what's actually
happening in your body.
And then reason number threebiopsies can sometimes miss it.
Now, this is still consideredthe golden standard for celiac
diagnosis, but sometimes thedamage in your body is patchy,
(08:13):
meaning some areas of theintestines are severely damaged
while others look completelynormal.
And if the doctor samples ahealthy spot, the test might
look negative, even though youstill have celiac.
It's like checking a few tileson the roof and missing the hole
where the water is actuallyleaking in.
So they generally say this oneis definitely the golden
(08:34):
standard, but there is a smallchance that it could be a false
negative here.
So I just want to make surethat our listeners are aware of
that and work with your doctor.
If you get a negative result,but yet you still feel like you
have celiac or something elsegoing wrong, this is where I
want to encourage you toadvocate for yourself, like we
like to do on this podcast.
(08:55):
And then number four isnon-celiac gluten sensitivity.
So for some people, the test isnegative because they don't
have celiac disease, but theystill can't tolerate gluten.
This is called non-celiacgluten sensitivity, or NCGS.
These symptoms are still very,very real and they often overlap
with celiac.
(09:15):
You might have brain fog, youmight have fatigue, you may have
headaches, you likely havestomach issues, you're going to
possibly have joint pain.
But the big difference withnon-celiac gluten sensitivity is
it doesn't cause intestinaldamage the way celiac does.
So the good news is you're notlikely getting malnourished from
(09:36):
the gluten.
So the good news is you're notlikely getting malnourished from
the gluten.
But for day-to-day life,treatment looks the same.
We are needing to avoid glutenso that you feel good.
This is where we're listeningto our body and eating the foods
that make us feel good andavoiding the foods that don't
make us feel good, and workingwith our doctor about the whole
conversation here.
And then, finally, reason numberfive is it could be something
(09:58):
else.
It could be not celiac.
It could be not celiac gluten,non-celiac gluten sensitivity.
Sometimes it could be anothercondition that mimics it, and
there are quite a few out thereHashimoto's, thyroid disease,
crohn's disease, lactoseintolerance and even food
intolerances like soy ornightshades can cause digestive
(10:21):
issues, fatigue and pain.
I know for me I not only haveceliac, but soy and specific
nightshades cause me digestiveissues, fatigue and pain.
So I actually have a doublewhammy there and you potentially
could have both as well, andthat's why it's important to
keep digging with your doctorand working through things,
(10:42):
especially if the test isnegative but your body is still
crying out for help.
This is something that I'm veryblessed.
My current doctor is very goodon being on top of new things,
on top of finding a holisticanswer to the situation, and she
actually recommended a book tous recently called the Plant
(11:03):
Paradox Book.
I highly encourage you readingit.
To read it, especially if youstill have stomach issues, even
if you know you're celiac andyou're eating gluten-free or
you're really sure you're glutenintolerant but you stick away.
You know you stay away from allthat gluten.
There might be something elsegoing on.
For me, it's soy and tomatoesare my main culprits that I
(11:25):
cannot eat.
I can tolerate potatoes, thankgoodness, which is in the
nightshade family.
I also can't tolerate peppershardly at all, so I've been
avoiding those as well.
So work with your doctor if youstill don't feel good and
sometimes misdiagnosis happenand then the one thing that some
doctors will just say is thatyou have IBS, but it's simply a
(11:48):
label, when your doctors don'thave any other explanation, and
I encourage you, if you've beenlabeled with having IBS, to get
to the root of what food isactually irritating you.
This is irritable bowelsyndrome.
Something is irritating you.
It's not a oh, you're fine, youjust have IBS.
No, let's make your life alittle better.
(12:09):
Let's figure out what foods areirritating your insides and
making you feel terrible.
So certain things can reallyhelp.
Some things my doctorrecommended to me was going on a
FODMAP diet.
It's a temporary diet where youtake out basically fermentables
.
You can Google FODMAP and youshould be able to find the list
(12:30):
of foods to avoid and then youslowly add in each one to figure
out what is actually botheringyou.
For me, raw apples bother meSome not terrible, but they make
me, you know, my stomach reallybloated and feel very
uncomfortable, especially if Ieat too many raw apples at once.
So it could be simple thingslike that that you might just
need to avoid.
(12:51):
And if you know what isirritating you, then you can
make a conscious choice as towhether it is worth having that
piece of food on that day,because you know what your day
is the rest of the day, or whatyou expect it to be, or the next
day.
You know how this food is goingto affect you and you know
whether it's worth having alittle cheat day or something on
(13:15):
a food that you're not supertolerant to.
Now I'm not talking celiac here.
We do not want to have cheatdays if you're celiac on
anything gluten related, but ifthere's another additional food
that's causing you digestivedistress, maybe you want to have
that slice of gluten-free pizza, even though the tomatoes
bother you, like they do me.
I just need to know that that'sgoing to happen to me.
(13:38):
So I usually don't make thatexception, but there could be a
time where that's what all Ihave is a choice for it.
So it's nice to know what isactually bothering you.
So things like the FODMAP dietcan really help you figure it
out.
You can do the Plant Paradoxand read that book by that
doctor by Dr Gundry is his name.
(13:58):
It's been a very interestingbook for me to read this summer.
So work with your doctor.
Even if they label it as IBS,have them help you do your own
research and figure out what isbothering your stomach besides.
You know, maybe besides gluten,let's say you have gluten
problems too.
What else is it?
(14:18):
And so we want to be digging into our own health.
We want to be advocating forourselves because it's worth it.
We are worth having wonderfuldays where we feel great.
If you've been navigatingconfusing symptoms or test
results, you don't have tofigure it all out by yourself.
In my newsletter that we sendevery other week, I share
gluten-free tips, safe productfinds, recipes and encouragement
(14:42):
to help you feel more confidentin your gluten-free journey.
You can sign up attheglutenfreeengineercom and
never miss a resource that couldmake your life a little easier.
So here's the step that finallygave me clarity.
After my negative blood test forceliac disease, I worked
diligently to try to figure outwhat is wrong, and I knew from
(15:04):
my research that the test mightnot have been accurate.
So what I actually did is Iwent to my children's doctor
their pediatrician and told themhow sensitive I was to gluten
and how it affected me and howit was so easy for me to get
sick.
And I asked him I'm like fromwhat I read, you know this is a
(15:27):
hereditary disease.
Should we be testing thechildren?
And he said yes.
At the time, my primary carephysician was not one that knew.
I had a different one then thanI do now.
It's not one that knew muchabout celiac, but my
pediatrician knew a lot moreabout celiac and he said yes, we
need to test all the children.
Well, the oldest immediatelygot a positive blood test result
(15:50):
after testing for it a positiveblood test result after testing
for it, and that helped me givethat clear answer that well,
he's got it.
So I probably got a falsenegative.
We then went to agastroenterologist a few months
later who confirmed that I hadit based upon my symptoms.
Now, typically a doctor won'tconfirm it based upon your
(16:11):
symptoms, but I'd already beenoff gluten for a whole year and
there's no way I could havefunctioned by going on a gluten
challenge and going back ongluten to get a medical test
based upon my children and basedupon my symptoms.
He enabled me as positive forceliac.
Later come to find out after mydad passed, he actually had a
(16:36):
positive blood test, positivetest I'm not sure which test he
got for celiac disease and hadbeen hiding it for over 10 years
.
So that just further, you know,shows that I actually do have
it and then that thatgastroenterologist was correct,
because I actually told both myparents when I was told I had
(16:57):
celiac disease that they neededto be tested and apparently
maybe my dad listened, but thenhe didn't want to tell anybody
else that he had celiac.
So the moral of the story hereis that you know you know your
body best.
Work to get the answers youneed.
You're not paranoid, you're notmaking things up.
(17:17):
When we feel terrible, we feelterrible and it's worth it to
figure out what is wrong.
So I encourage you to work tofigure out.
If you're still having issues,figure out what is wrong, see a
different doctor, do your ownresearch, come with better
questions instead.
If that helps your doctor do abetter job of understanding what
(17:39):
you're trying to say.
You want to encourage you totrust your body because it's
telling you the truth.
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 totheglutenfreeengineercom.
(18:03):
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
(18:23):
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.
Quick reminder before we get started on this
episode.
This podcast is based on mypersonal experiences and isn't
medical advice.
So let's talk about the dreadednegative test result.
You walk into the doctor'soffice with a list of symptoms,
maybe even a family history ofceliac.
They run a blood test or maybeeven a biopsy.
(00:20):
The result comes back negativeand the doctor says good news,
you don't have celiac disease.
But deep down, you knowsomething isn't right.
You still feel terrible whenyou eat gluten with its bread,
pasta or pizza, and you mighteven think am I imagining this?
But you're likely not imaginingthis.
We are going to be giving inthis episode five reasons your
(00:41):
test could be negative and whyyou're still struggling.
So let's get to it.
Welcome to the Gluten-FreeEngineer podcast.
I'm your host, Carrie Saunders.
In 2011, I was diagnosed withceliac disease, a moment that
changed everything, but I wasdetermined not to let it hold me
back.
With my two engineering degrees, I set out to reverse engineer
(01:02):
the gluten-free lifestyle,breaking down recipes, safety
tips, travel hacks andeverything in between to rebuild
a life I love.
Whether you have celiac disease, gluten intolerance or simply
choose to live gluten-free, thispodcast is for you.
Join me each week as wesimplify the gluten-free
lifestyle, make it fun and provethat you don't have to miss out
(01:22):
on anything.
Welcome back to the podcast.
Today we're talking about whatto do if you got a negative
celiac test result but yet youstill feel terrible, and some
common reasons as to why youmight still feel terrible and
why you might have gotten afalse negative, which could be
the potential here.
So one reason that you may havegotten a false negative and
(01:43):
you're actually really celiacand don't know it is that you
went gluten-free too early andblood tests only work if
gluten's in your system, as wellas biopsy tests only work if
gluten's in your system.
So these core tests only workif you've been eating gluten,
for they recommend at least twoto three months for an accurate
(02:05):
test.
The antibodies they measurewhen they're doing the blood
test show up as a reaction togluten.
So if you've already cut backgluten or eliminated gluten
before testing, your body maynot have had enough of a
reaction for the test to detectit.
Doctors call this a glutenchallenge, meaning you need to
(02:26):
be eating gluten regularly formonths before taking the test
for results to be accurate, andsome doctors will say several
weeks.
But honestly, in a lot of theresearch I've done, that may not
be enough.
And most of it says severalmonths.
And this is where I went wrong.
I accidentally went off gluten,trying to lose weight.
(02:47):
If you know my origin story, Iread the primal blueprint book
and decided to use it to help melose weight because it made
sense from a scientificstandpoint that if I controlled
my blood sugars by eating lessprocessed foods then I would be
able to lose weight and goingoff of the gluten.
(03:07):
Because I wasn't eatingprocessed foods, because that's
where most of the gluten is.
I had been off of it forseveral months and I asked my
doctor.
I said, hey, I think I mighthave a celiac disease, can we do
a test?
And she's like sure.
And back then that doctor Ieven asked her.
I said, well, I haven't beeneating gluten for a few months.
Will this test still beaccurate?
(03:29):
Because I'd already read thatit may not be accurate and she
had no idea.
So sometimes doctors don't evenknow.
She's like, oh no, it'll beaccurate.
Well, it actually wasn'taccurate.
I find out a few years later.
So make sure that you have beenon gluten for many months
before you get tested.
And if you've already gone offgluten, then there's some other
(03:52):
things that you can do instead.
So talk to your doctor aboutthat, because going back on
gluten sometimes it's just notan option for us.
I know they wanted to do thatto our oldest kid who got marked
for celiac Justin B Shore andwe just knew that we couldn't do
it because his primary doctortold him to go off gluten and he
(04:13):
was feeling so much better andwe didn't want to do that to him
.
We didn't want to make himmiserable.
And then reason number two isthe wrong test was ordered.
So I want to dig a littledeeper here, because this is one
of the most common reasonspeople get a negative test when
something is still going on.
When most doctors say they'rerunning a celiac test, what they
(04:35):
usually mean is the tissuetransglutamase antibody test.
That is a mouthful IJA type, orit's also just the acronym, is
TTG-IGA for short.
It's the most common onebecause it's inexpensive and
it's widely available and it's avery sensitive test for picking
up celiac disease.
(04:56):
But the problem is, if you havesomething called an IGA
deficiency, which is more commonthan most people realize, this
TTG-IgA test won't work for you.
It could come back negative,even if you do have celiac
disease.
That's why doctors should alsoorder a total serum IgA test at
(05:20):
the same time.
So basically, that checkswhether your body even makes
enough IGA for the main test tobe valid, and a lot of family
doctors and your primary doctorsdo not know this.
This is not something they'venecessarily been educated in.
So most of the time when youwant to be testing for celiac
(05:41):
disease, I highly recommend thatyou ask for a referral to a
gastroenterologist, somebody whospecializes in this area of the
body.
And then there are also twoother tests that sometimes get
skipped Endomysial Antibody IgATest, or EMA-IGA for short.
(06:01):
This one is extremely specificmeaning.
If it's positive, it almostalways points to celiac.
There are also two other teststhat sometimes get skipped the
endomysial antibody IgA test, orEMA-IGA.
This one is extremely specific,meaning if it's positive, it
(06:22):
almost always points to celiac.
And then demyated Gladion,peptide antibodies or DGP tests.
Some of these are really hardto read, both the IgA and IgG on
these.
These can be especially helpfulin children under two or in
people who don't produce enoughIgA and IgG on these.
These can be especially helpfulin children under two or in
people who don't produce enoughIgA.
(06:43):
Now, obviously, these are thetests that are really common,
thati was able to research andfind on the internet.
So I and ones that have been,you know, used on us as well,
some, some of them have, some ofthem haven't.
So I want to make sure that youare, you know, working with
your doctor, as always, you know, because these tests may change
, the availability of them mightchange, there may be new
(07:04):
research that comes out andcomes up with even better tests.
So make sure you're doingcurrent research when you are
doing these.
But I just want to make surethat our listeners recognize
that there are more than oneblood tests to be done to double
check for celiac.
Now, some of these aren't donebecause they're more expensive.
Like I said, some of those onthe earlier side that I was
(07:25):
talking about are much cheaperand more readily available.
So work with your doctor to seewhich ones are appropriate for
you, and if your doctor only ranthe TTG-IGA test by itself, you
may have not had the fullpicture.
That one's definitely one tonote, especially if they didn't
do the total IGA with it, and insome cases, the EMA and the DGP
(07:50):
need to be used as well, andwithout those it's very possible
to get a negative result thatdoesn't reflect what's actually
happening in your body.
And then reason number threebiopsies can sometimes miss it.
Now, this is still consideredthe golden standard for celiac
diagnosis, but sometimes thedamage in your body is patchy,
(08:13):
meaning some areas of theintestines are severely damaged
while others look completelynormal.
And if the doctor samples ahealthy spot, the test might
look negative, even though youstill have celiac.
It's like checking a few tileson the roof and missing the hole
where the water is actuallyleaking in.
So they generally say this oneis definitely the golden
(08:34):
standard, but there is a smallchance that it could be a false
negative here.
So I just want to make surethat our listeners are aware of
that and work with your doctor.
If you get a negative result,but yet you still feel like you
have celiac or something elsegoing wrong, this is where I
want to encourage you toadvocate for yourself, like we
like to do on this podcast.
(08:55):
And then number four isnon-celiac gluten sensitivity.
So for some people, the test isnegative because they don't
have celiac disease, but theystill can't tolerate gluten.
This is called non-celiacgluten sensitivity, or NCGS.
These symptoms are still very,very real and they often overlap
with celiac.
(09:15):
You might have brain fog, youmight have fatigue, you may have
headaches, you likely havestomach issues, you're going to
possibly have joint pain.
But the big difference withnon-celiac gluten sensitivity is
it doesn't cause intestinaldamage the way celiac does.
So the good news is you're notlikely getting malnourished from
(09:36):
the gluten.
So the good news is you're notlikely getting malnourished from
the gluten.
But for day-to-day life,treatment looks the same.
We are needing to avoid glutenso that you feel good.
This is where we're listeningto our body and eating the foods
that make us feel good andavoiding the foods that don't
make us feel good, and workingwith our doctor about the whole
conversation here.
And then, finally, reason numberfive is it could be something
(09:58):
else.
It could be not celiac.
It could be not celiac gluten,non-celiac gluten sensitivity.
Sometimes it could be anothercondition that mimics it, and
there are quite a few out thereHashimoto's, thyroid disease,
crohn's disease, lactoseintolerance and even food
intolerances like soy ornightshades can cause digestive
(10:21):
issues, fatigue and pain.
I know for me I not only haveceliac, but soy and specific
nightshades cause me digestiveissues, fatigue and pain.
So I actually have a doublewhammy there and you potentially
could have both as well, andthat's why it's important to
keep digging with your doctorand working through things,
(10:42):
especially if the test isnegative but your body is still
crying out for help.
This is something that I'm veryblessed.
My current doctor is very goodon being on top of new things,
on top of finding a holisticanswer to the situation, and she
actually recommended a book tous recently called the Plant
(11:03):
Paradox Book.
I highly encourage you readingit.
To read it, especially if youstill have stomach issues, even
if you know you're celiac andyou're eating gluten-free or
you're really sure you're glutenintolerant but you stick away.
You know you stay away from allthat gluten.
There might be something elsegoing on.
For me, it's soy and tomatoesare my main culprits that I
(11:25):
cannot eat.
I can tolerate potatoes, thankgoodness, which is in the
nightshade family.
I also can't tolerate peppershardly at all, so I've been
avoiding those as well.
So work with your doctor if youstill don't feel good and
sometimes misdiagnosis happenand then the one thing that some
doctors will just say is thatyou have IBS, but it's simply a
(11:48):
label, when your doctors don'thave any other explanation, and
I encourage you, if you've beenlabeled with having IBS, to get
to the root of what food isactually irritating you.
This is irritable bowelsyndrome.
Something is irritating you.
It's not a oh, you're fine, youjust have IBS.
No, let's make your life alittle better.
(12:09):
Let's figure out what foods areirritating your insides and
making you feel terrible.
So certain things can reallyhelp.
Some things my doctorrecommended to me was going on a
FODMAP diet.
It's a temporary diet where youtake out basically fermentables
.
You can Google FODMAP and youshould be able to find the list
(12:30):
of foods to avoid and then youslowly add in each one to figure
out what is actually botheringyou.
For me, raw apples bother meSome not terrible, but they make
me, you know, my stomach reallybloated and feel very
uncomfortable, especially if Ieat too many raw apples at once.
So it could be simple thingslike that that you might just
need to avoid.
(12:51):
And if you know what isirritating you, then you can
make a conscious choice as towhether it is worth having that
piece of food on that day,because you know what your day
is the rest of the day, or whatyou expect it to be, or the next
day.
You know how this food is goingto affect you and you know
whether it's worth having alittle cheat day or something on
(13:15):
a food that you're not supertolerant to.
Now I'm not talking celiac here.
We do not want to have cheatdays if you're celiac on
anything gluten related, but ifthere's another additional food
that's causing you digestivedistress, maybe you want to have
that slice of gluten-free pizza, even though the tomatoes
bother you, like they do me.
I just need to know that that'sgoing to happen to me.
(13:38):
So I usually don't make thatexception, but there could be a
time where that's what all Ihave is a choice for it.
So it's nice to know what isactually bothering you.
So things like the FODMAP dietcan really help you figure it
out.
You can do the Plant Paradoxand read that book by that
doctor by Dr Gundry is his name.
(13:58):
It's been a very interestingbook for me to read this summer.
So work with your doctor.
Even if they label it as IBS,have them help you do your own
research and figure out what isbothering your stomach besides.
You know, maybe besides gluten,let's say you have gluten
problems too.
What else is it?
(14:18):
And so we want to be digging into our own health.
We want to be advocating forourselves because it's worth it.
We are worth having wonderfuldays where we feel great.
If you've been navigatingconfusing symptoms or test
results, you don't have tofigure it all out by yourself.
In my newsletter that we sendevery other week, I share
gluten-free tips, safe productfinds, recipes and encouragement
(14:42):
to help you feel more confidentin your gluten-free journey.
You can sign up attheglutenfreeengineercom and
never miss a resource that couldmake your life a little easier.
So here's the step that finallygave me clarity.
After my negative blood test forceliac disease, I worked
diligently to try to figure outwhat is wrong, and I knew from
(15:04):
my research that the test mightnot have been accurate.
So what I actually did is Iwent to my children's doctor
their pediatrician and told themhow sensitive I was to gluten
and how it affected me and howit was so easy for me to get
sick.
And I asked him I'm like fromwhat I read, you know this is a
(15:27):
hereditary disease.
Should we be testing thechildren?
And he said yes.
At the time, my primary carephysician was not one that knew.
I had a different one then thanI do now.
It's not one that knew muchabout celiac, but my
pediatrician knew a lot moreabout celiac and he said yes, we
need to test all the children.
Well, the oldest immediatelygot a positive blood test result
(15:50):
after testing for it a positiveblood test result after testing
for it, and that helped me givethat clear answer that well,
he's got it.
So I probably got a falsenegative.
We then went to agastroenterologist a few months
later who confirmed that I hadit based upon my symptoms.
Now, typically a doctor won'tconfirm it based upon your
(16:11):
symptoms, but I'd already beenoff gluten for a whole year and
there's no way I could havefunctioned by going on a gluten
challenge and going back ongluten to get a medical test
based upon my children and basedupon my symptoms.
He enabled me as positive forceliac.
Later come to find out after mydad passed, he actually had a
(16:36):
positive blood test, positivetest I'm not sure which test he
got for celiac disease and hadbeen hiding it for over 10 years
.
So that just further, you know,shows that I actually do have
it and then that thatgastroenterologist was correct,
because I actually told both myparents when I was told I had
(16:57):
celiac disease that they neededto be tested and apparently
maybe my dad listened, but thenhe didn't want to tell anybody
else that he had celiac.
So the moral of the story hereis that you know you know your
body best.
Work to get the answers youneed.
You're not paranoid, you're notmaking things up.
(17:17):
When we feel terrible, we feelterrible and it's worth it to
figure out what is wrong.
So I encourage you to work tofigure out.
If you're still having issues,figure out what is wrong, see a
different doctor, do your ownresearch, come with better
questions instead.
If that helps your doctor do abetter job of understanding what
(17:39):
you're trying to say.
You want to encourage you totrust your body because it's
telling you the truth.
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 totheglutenfreeengineercom.
(18:03):
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
(18:23):
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.
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