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My Dr Thinks Im Crazy?

horsefarmer4

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horsefarmer4 Apprentice
horsefarmer4
Posted

HI, TODAY I HAD MY FIRST VISIT WITH MY GI. I LEFT HIS OFFICE FEELING VERY STUPID AND A BIT CRAZY. MY SYMPTOMS ARE ALOT NEURO(BRAIN FOG, DIZZINESS, LACK OF CONCENTRATION, VISUAL DISTURBANCE, IRRITABILITY) I ALSO HAVE IRREGULAR PERIODS, BLOATING , DIARRAH, STOMACH PAINS, CONSTPATION, AND ECT... I TOLD HIM I HAD GONE WHEAT AND GLUTEN FREE FOR 2 MONTHS AND HAD RELIEF FROM NEARLY ALL OF MY SYMPTOMS. AND AFTER SLOWLY GOING BACK ON WHEAT FOR THE LAST MONTH IT HAS BEEN ALMOST DEBILATATING. I HAVE STUMBLED UPON CELIAC DIS AND AFTER GOING WITHOUT WHEAT, I HAVE RELIZED HOW AWFUL I HAVE FELT MOST OF MY LIFE. I AM OVER WEIGHT AND I NOTICED THAT WHEN I EAT WHEAT I MAKES ME FEEL LIKE I HAVE EITHER MORNING SICKNESS OR A HANG-OVER. I FEEL ICKY SO I THINK IF I EAT SOMETHING SWEET I'LL FEEL BETTER. BUT I DON'T IT MAKES ME FEEL WORSE! DO I SOUND CRAZY? DOES THIS MAKE ANY SENSE? THE DR TODAY SAID "THE NEURO SYMPTOMS I DISCRIBE RARELY SHOW UP IN CELIAC'S 1 IN 90,000." MAYBE I STRESSED THE HEAD SYMPTOMS TO HIM MORE THAN THE STOMACH? BUT I AM JUST RELIZING THE IBS SYMPTOMS AFTER GOING WHEAT FREE AND THEN GOING BACK ON IT. BEFORE THAT I JUST THOUGHT MY STOMACH PAINS WERE NORMAL(FOR ME). MY BLOOD WAS NEG? AND HE DOESN'T WANT TO DO THE SCOPE JUST YET. HE ORDERED A CAT OF MY AB AND IS LEANING TOWARDS CROHNS?

PLEASE HELP.

AND I HAVE DERRMATTIS ON MY HANDS FEET AND LEG THAT WENT AWAY WHEN WHEAT FREE FOR 2 MONTHS.

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Katydid Apprentice
Katydid
Posted

LETS FACE IT, WE ALL THINK THAT A GI IS THE LAST WORD IN STOMACH AND GUT PROBLEMS, BUT ALL GI'S ARE DEFINITELY NOT CREATED EQUAL.

I ONCE HAD VERY PROMINENT GI TELL ME THAT FATIGUE WAS IN NO WAY A SYMPTOM OF CELIAC.

YOUR BLOOD TESTS COULD HAVE BEEN FAULTY BECAUSE YOU HAD BEEN ELIMINATING GLUTEN FOR A WHILE. I SAY IF EATING GLUTEN FREE IMPROVES YOUR LIFE QUALITY, THEN THAT IS WHAT YOU SHOULD DO AND QUIT WORRYING ABOUT BEING CONFUSED OR CRAZY.

ADDED BONUS; IF IT IS CELIAC AND YOU AVOID GLUTEN, YOU WILL EVEN CONTINUE TO IMPROVE MORE AND MORE.......UP TO A YEAR OR SO. AND AT THE SAME TIME YOU WILL BE AVOIDING SOME OF THE NASTY THINGS THAT CAN COME WITH IT.

ptkds Community Regular
ptkds
Posted

GET A NEW GI DR!!!!

Most people on here have neuro symptoms. My 7 yr old dd can't control her emotions at all when she is glutened. She just cries at the drop of a hat and can't make herself stop. Brain fog is VERY common in Celiacs.

You already have your answer: A gluten-free diet makes you feel better. Get back on the diet and stay on it for life. If you need a diagnosis (some ppl do), then find a new GI dr. Don't waste your time or money on a CAT scan. Alot of times, a diagnosis is made with diet alone. Good luck and keep us posted. Ask as many questions as you need to. This is a great place to get help and support!

tom Contributor
tom
Posted
THE DR TODAY SAID "THE NEURO SYMPTOMS I DISCRIBE RARELY SHOW UP IN CELIAC'S 1 IN 90,000."

Ugh

Yet another GI who barely knows diddly about Celiac.

YOU know your body & mind.

YOU know the difference that going gluten-free makes.

So many of us have experienced the neuro symptoms you describe.

I, too, think you should find a new Dr.

nutralady2001 Newbie
nutralady2001
Posted

My primary symptoms if I get glutened now are brain fog and fatigue..............mind numbing fatigue I will stay in bed and sleep the clock around!

I was told for nearly 40 years that I had "IBS" in fact the damage to my villi was so bad it still showed up in a scope after 12 months gluten-free with a couple of slip-ups and taking iron tablets when I had the scope w/o realizing they had gluten in them, my anitbodies were raging as well

I knew I felt better w/o gluten now I know why!!

horsefarmer4 Apprentice
horsefarmer4
Posted
  • Author

THANK YOU EVERYONE FOR YOUR KNOWLEDGE AND SUPPORT! I'M GOING GLUTEN FREE! ANY TIPS ON HOW TO START?

Lisa Mentor
Lisa
Posted

Open Original Shared Link

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

This is a great beginner site.

Welcome to the Club! :)

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Puffin Newbie
Puffin
Posted
I FEEL ICKY SO I THINK IF I EAT SOMETHING SWEET I'LL FEEL BETTER. BUT I DON'T IT MAKES ME FEEL WORSE! DO I SOUND CRAZY? DOES THIS MAKE ANY SENSE? T

Consider sugar and a yeast problem to be connected and try reading on Candida and the use of a probiotic along with avoiding sugar for a few weeks to a month.

In addition I can tell you that I experienced all your symptoms and more and they have all gotten better or are gone on a gluten-free diet.

tarnalberry Community Regular
tarnalberry
Posted

If you were gluten free for two months before blood tests, there's a decent chance you got false negatives out of your test.

But more important than any blood test is the test you did yourself - you felt better on a gluten free diet, so why not continue doing what makes you feel better? It's clearly healthier for you!

Adelle Enthusiast
Adelle
Posted

I have neuro symptoms too!!!! I couldn't WALK on my own (I couldn't feel or control my legs from the thigh down) most of the time, I slept 20 hours/day, ate under 700 cals/day (and was still gaining weight), AND I had HUGE problems with my emotions (I was actually dx'd borderline personality disorder, nonresponsive to meds). 11 docs had written me off and said it was either in my head, or I was FAKING IT!!!!

I was 21.

A week after my 22nd birthday, I GOOGLED my symptoms. And guess what popped up?? My doctor didn't believe me. 4 days into gluten-free I could WALK again (not far, but still)!!

Your GI is a moron!! It's YOUR body and YOUR life!!

Oh I just read where you're going gluten-free. Congratulations!!! I don't even MISS glutenous food. I'm just so busy enjoying being healthy that I don't have time to miss icky food!!

Welcome to the club!! You surely are NOT alone!!

nora-n Rookie
nora-n
Posted

I was very gluten-light before my tests, so they showed up negative. I had gotten neuro symptoms from gluten and thatn just b chance went low-carb and then noticed lots of diarrea and gas when I ate something with gluten (rarely) so I put two and two together. Had to go back on gluten for the scope and neuro symptoms and DH-like burning rash came back. Had not connected them with gluten before. Negaive biopsy and gastro doc after three visits said I need to see a psychiatrist because I was making i t all up as one does not have neuro symptoms from gluten and he never ever saw a patient with DH so no use sending me to a biopsy for DH...

But, here on the internet there are lots and lots of people like me, and I got so mudh better from the severe fatigue and brain fog after seven months off gluten, and had to decrease thyroid meds by one half.

nora

Ursa Major Collaborator
Ursa Major
Posted

I wholeheartedly agree that your GI is a moron. I think EVERYBODY with celiac disease has at least some neuro symptoms, probably all of us. And with some, they are the primary symptoms. They were for me for fifty years, before I started having terrible digestive symptoms (even though I had milder ones all my life, too).

I was told many times it is all psychological, too. Until I figured it out myself and went gluten-free.

You know what gluten does to you. Good for you to dismiss that GI and getting back on your gluten-free diet. I hope you get completely well.

GlutenWrangler Contributor
GlutenWrangler
Posted

Lowercase letters work just as well! It looks like you're screaming at us. But in all seriousness, you have to see a new gastroenterologist. Nobody deserves to be treated like a joke by their doctor. Don't allow yourself to be treated that way. There's definitely a better doctor out there for you. Good luck,

-Brian

num1habsfan Rising Star
num1habsfan
Posted

See a new doctor. I've gone through so many I don't know if I can even count them all already. Celiac definitely has neurological symptoms. If it's not brainfog then it's emotions out of control!!

For the last 2 years I've been told everything has been in my head. It's not only the new problems they think i'm making up---January 1st will be 5 years of having Celiac and they still me that I DONT have it, that I only have IBS and there's no reason I can't eat gluten.

We know our stomachs better than anyone else. If gluten-free made you feel better, stick to it. There's a LOT of us on here besides me who did this all by self-diagnosis.

~ Lisa ~

sneezydiva Apprentice
sneezydiva
Posted

You know your body better than anybody else. Don't let any doctor make you doubt yourself or make you think you are crazy. I had my share of being told that things were all in my head, and that I needed antidepessents. Or that yes, I did have the problems I described, but I was exaggerating how bad they were.

If you want some validation read "The Gluten Connection" by Shari Lieberman or "Going Against the Grain" by Melissa Diane Smith. These books really helped me to be confident in what my body was telling me, and made me determined to go gluten free no matter what my test results.

Offthegrid Explorer
Offthegrid
Posted

My brother's blood test and endoscopy came back "normal."

He gets quite sick if he eats gluten or dairy.

Tests are not the end-all in this. If you feel better, then stay away from gluten. Who cares about the label? Unless you need it for some other reason, I'd stay gluten-free and see how the neuro symptoms are in 3 to 6 months. Make sure to eliminate all the hidden sources, however.

You may also want to consider then whether you have other food intolerances. Dairy and soy are very common.

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