Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

horsefarmer4

My Dr Thinks Im Crazy?

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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 ~

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,777
    • Most Online
      4,125

    Newest Member
    Sdceliac
    Joined
  • Forum Statistics

    • Total Topics
      112,052
    • Total Posts
      956,601
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    I am celiac and eat gluten-free, DF, SF and sunflower free because I'm highly reactive to all 4. I discovered about a year and a half ago that I would have severe and immediate GI reactions, similar to as if I ate dairy, to anything with sunflower/safflower products in it, but I think that's when using the oil became more prevalent too. Strange because I loved sunflower seeds as a kid. I've also linked it to places I've eaten out where everything was fine and then discovered they started using s
    So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated that
Potatoes are good for breakfast! Your concoction sounds pretty good. K, how about this? Peel & dice potatoes, fry them in just enough olive oil to keep them from sticking in a skillet until they begin getting crispy. Toss in diced sweet peppers or maybe chili peppers, onions to soften. I know you're not doing egg yolks b/c of iodine but you can do the whites. Pour egg white on top until the white is done. If you have a steak or some leftover steak, you can heat that on the side. YUM!
  • Blog Entries

  • ×
    ×
    • Create New...