Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Dr Thinks Im Crazy?

horsefarmer4

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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! :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,860
    • Most Online (within 30 mins)
      7,748
    PCM
    Newest Member
    PCM
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Opinions on my test results/symptoms

      By Scott Adams · Posted

      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...