Should I Mention Celiac To My Doctor?

[MrsMcC]

Hi Everyone

I came across this board in desperation trying to find some answers for my symptoms, which seem to be baffling my Doctor! I wonder if I should mention Celiac as something they should consider?

I have suffered on and off for many years with Gastro-issues....this last "flare up" has been going on since February. Apologies in advance for the length of this post! I am 41 years old, mother of 2 children. BMI is currently 22, so I am healthy weight.

My symptoms are: (all of which come and go and are not constant)

Upper central abdominal pain (comes and goes and is gripy, spasm like) has woken me in the night on occasion

Nausea

Diahrrea

Tiredness (wake up most days feeling like I haven't slept!)

Lots of gurgling noises in abdomen, (also weird bubbling sensation in lower back)

Burping and farting (sorry!)

Indigestion (not hearburn)

Tingling sensation in right leg (thigh)

Feeling cold (hands and nose particularly)

Depression and Anxiety (I have suffered with this on and off for years) even when I have been free from the these physical symptoms.

Mild dizziness and forgetfulness

I have not lost any weight.

So far I have the following tests:

Upper Abdominal Ultrasound (pancreas, liver, gallbladder, kidneys, spleen) - all normal

H pylori (breath test) - negative

Had upper Endoscopy earlier this week - Doctor said everything looked fine. Although did take biopsy as he said to check for "bugs" - I presume he meant h pylori again...waiting for results of this. Wonder if he is looking for Celiac damage?

I should also mention I had all these similar tests done approx 12 years ago as went through pretty much exactly the same (except I don't recall having the tingling and occasional dizziness back then).

Back then they said it was "stress related"..... things did calm down, but I have had some flare ups in between, but never lasting this long.

I don't want to appear silly in front of my doctor, after all he is the "expert".... I wonder if it is Celiac then how come I have had long periods of time without symptoms. Maybe I should also mention that I have often been on "low carb" diets, and from memory I never had symptoms like this when eating low carb (so no bread, pasta, biscuits etc etc)...

What do you guys think?

Thanks so much in advance )

[MrsMcC]

Additional information:

I have been given Omeprazole and Lansaprazole, neither of which are working - not surprisingly as it seems that acid is not the issue. Endoscopy appeared normal with no signs of too much acid causing the problems. Thanks everyone!

[benXX]

I guess on a celiac forum you can only get this reply:

Of course you should ask your doctor to run a blood test. It's the first step to find out. Most of us have a history of misdiagnoses.

Let him check the vitamins/mineral levels too in case of mal-absorption.

But do keep on eating gluten as long as you have not been fully checked, otherwise you will risk false negatives.

[ravenwoodglass]

Yes you should be tested but do be aware that even on gluten the tests can come back a false negative. As was advised do have them do full vitamin and mineral panels as well and make sure they do a total IGA. If the celiac tests come back positive then you will likely be referred for an endoscopy. If that is the case then do keep eating gluten until that procedure is done. After all testing do give the diet a good strict try for a couple of months to see if it helps.

[Bubba's Mom]

Hi Everyone

I came across this board in desperation trying to find some answers for my symptoms, which seem to be baffling my Doctor! I wonder if I should mention Celiac as something they should consider?

I have suffered on and off for many years with Gastro-issues....this last "flare up" has been going on since February. Apologies in advance for the length of this post! I am 41 years old, mother of 2 children. BMI is currently 22, so I am healthy weight.

My symptoms are: (all of which come and go and are not constant)

Upper central abdominal pain (comes and goes and is gripy, spasm like) has woken me in the night on occasion

Nausea

Diahrrea

Tiredness (wake up most days feeling like I haven't slept!)

Lots of gurgling noises in abdomen, (also weird bubbling sensation in lower back)

Burping and farting (sorry!)

Indigestion (not hearburn)

Tingling sensation in right leg (thigh)

Feeling cold (hands and nose particularly)

Depression and Anxiety (I have suffered with this on and off for years) even when I have been free from the these physical symptoms.

Mild dizziness and forgetfulness

I have not lost any weight.

So far I have the following tests:

Upper Abdominal Ultrasound (pancreas, liver, gallbladder, kidneys, spleen) - all normal

H pylori (breath test) - negative

Had upper Endoscopy earlier this week - Doctor said everything looked fine. Although did take biopsy as he said to check for "bugs" - I presume he meant h pylori again...waiting for results of this. Wonder if he is looking for Celiac damage?

I should also mention I had all these similar tests done approx 12 years ago as went through pretty much exactly the same (except I don't recall having the tingling and occasional dizziness back then).

Back then they said it was "stress related"..... things did calm down, but I have had some flare ups in between, but never lasting this long.

I don't want to appear silly in front of my doctor, after all he is the "expert".... I wonder if it is Celiac then how come I have had long periods of time without symptoms. Maybe I should also mention that I have often been on "low carb" diets, and from memory I never had symptoms like this when eating low carb (so no bread, pasta, biscuits etc etc)...

What do you guys think?

Thanks so much in advance )

Ask your Dr. for the full Celiac panel. Your symptoms fit.

They also fit with pancreatic insufficiency, where you don't make enough enzymes to break down your food properly. Digestive enzymes taken with meals or heavy snacks help a lot (can be caused by gluten intolerance). You might also ask for a hydrogen breath test that tells if there's a bacterial overgrowth going on. That also fits with some of your symptoms.

Never be afraid to mention things to your Dr. Many Dr.s don't think to test for Celiac. It was considered a rare disease, but they are findiong it's not quite so rare after all.

[MrsMcC]

Thanks for the replies so far! Much appreciated.

I already had a breath test for h pylori - this was negative. I am waiting for the result of a h pylori biopsy taken during my endoscopy on Monday this week.

I had an abdominal ultrasound last week, the doctor said my pancreas looked great - but I guess they probably can't tell if its doing its job properly via a scan (the enzyme thing?)

I have to wait until June 12th to see the Doctor again, so am thinking it might be a good idea to keep a symptom and food diary between now and then as this may help in some way.....

[beachbirdie]

Thanks for the replies so far! Much appreciated.

I already had a breath test for h pylori - this was negative. I am waiting for the result of a h pylori biopsy taken during my endoscopy on Monday this week.

I had an abdominal ultrasound last week, the doctor said my pancreas looked great - but I guess they probably can't tell if its doing its job properly via a scan (the enzyme thing?)

I have to wait until June 12th to see the Doctor again, so am thinking it might be a good idea to keep a symptom and food diary between now and then as this may help in some way.....

Just throwing these out there too...gall bladder and thyroid. They can have similar symptoms to celiac, and actually they all seem to travel together so it's good to check for all of them!