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

Negative Blood Test, But Have Regular Celiac Symptoms?

mikacurl247

Recommended Posts

mikacurl247 Newbie
mikacurl247
Posted

Well first i want to say it is 2am in the morning so if typed as if i was drunk, please excuse me=)

Hello, I recently visit my doctor and asked her for a Celiac test...and well it came back negative=(

But i am still having some weird celiac-ish symptoms. Most of my symptoms i have been having for over a two years.

My symptoms include :

**Very upset stomach- I even wake up every morning with a miserable stomach.

**Rashes - I get a rash around my mouth especially when i consume gluten containing oatmeal.

I also have a rash on both of my arms.

**Numbness/tingling

**Headaches

**Sever bloating & gassy stomach - I am bloated every single day!

**Lactose Intolerant

**Cramps - especially after eating pasta

**Very Fatigue - I am tired all the time, and the bloating doesnt help

**Diarrhea

**Lost of menstrual

***Im not underweight but i am overweight, and i am currently loosing some of the weight.

And most recently(for the past 3 weeks) i cut out most starches(beside starchy veggies, potatoes, rice, and certain wheat bread). But i have now started to re-incorporate the breads & pastas back into my diet, and since then my legs and butt area have been feeling sore! Like as if i had fallen on my butt a few thousand times or someone kicked me in that area!

I really want to know have anyone you had the sore butt feeling?? I am really concerned about that.

Also, Should i go on a gluten free diet? Should i get more test done?

Please help!

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

Celiac.com Sponsor (A8-M):


rgarton Contributor
rgarton
Posted

I'm sorry your feeling so lousy, i don't know the sore butt feeling but general achiness yes! My mum has been celiac most her life but has only just got a dignosis, at 43! Shes had countless blood tests for celiac that all came back negative so when i got diagnosed she opted to have the biopsy, painless! And it came back positive! So ask for a biopsy and see nothing to lose! I hoep you find success or a doctor who will try every test until they realise whats wrong. I had to change doctors 5 times before i found mine who got me diagnoses within two visits. Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

False negatives are not uncommon with both the blood test and biopsy. You do need to be eating gluten for the best chance of an accurate test for both. After you are done with all the testing you choose to do then do a very strict trial of the diet no matter what the results. It is best to go with whole unprocessed food when you are doing the trial and also drop dairy at the same time.

debbie7730 Newbie
debbie7730
Posted

I am in the same boat. I tested negative for Celiac disease, but I have many of the symptoms. To top it off, my mother suffers from Celiac (she tested positive), so I think that the chances that my problems are caused by something else are unlikely. My mother is coming out next weekend for two weeks, so I am just going to try the gluten free diet while she is here and for a couple of weeks after and see if I improve. I haven't been able to get the doctors to take seriously that this is what is giving me the problems. Thus, I am going to try the diet (which from what I understand is the best diagnosis anyway). Good luck figuring out what is wrong with you. I hope we all get some answers and relief from our symptoms. :)

mikacurl247 Newbie
mikacurl247
Posted
  • Author

thanks everyone :D

Archived

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

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


  • Member Statistics

    • Total Members
      130,534
    • Most Online (within 30 mins)
      7,748
    Barbx4
    Newest Member
    Barbx4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Fabrizio
      Kan-101

      By Fabrizio · Posted

      Thanks for your article. 
    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Thank you.  Very helpful.
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.   There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously. Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.
    • knitty kitty
      Lymphocytic Colitis with Celiac

      By knitty kitty · Posted

      Thank you, @Oldturdle, I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.   Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.   Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.   In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.   Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!   I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.   It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween. I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts.  P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
×
×
  • Create New...