Jump to content
  • 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

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

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

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

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

thanks everyone :D

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.