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 Celiac.com!
    eNewsletter
    Donate

Does Anyone Get These Strange Symptoms?


Omck

Recommended Posts

Omck Newbie

The day after a glutening it's mostly neurological effects like lethargy or just depression and the day after that I get gut wrenching pain above my belly button (like unbearable for hours), extreme thirst, tingling in hands and feet, feel very cold, dizzy and then my stomach feels bruised inside for a day or 2 after and finally it leaves with a migraine. The stomach ache is worse if I consume lots of starches like rice etc...as if my intestine is so damaged that it hurts to push it through. Does that make sense? Or does it sound like something else is going on?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. I also read your other post and you do seem to have what could be celiac related symptoms. It sounds like your doctor has ruled out at least a couple things like your gallbladder and pancreas. The bad news is that to be tested for celiac you do need to be eating gluten. It sounds like you have been gluten free or light for a while so you would need to challenge with gluten for some time before testing. 

Link to comment
Share on other sites
  • 3 weeks later...
Celiac Ninja Enthusiast

You DO NOT have to eat gluten to be tested for Celiac! Don't eat gluten.

 

A CELIAC PANEL is a DNA test which is accurate for doctor to determine if you are a celiac. Celiac disease is genetic therefore being on a gluten free or gluten diet doesn't not make a difference.

 

There is a long period of fasting for this test for people like us who suffer from malabsorbtion. It will take 4 larger test tubes of blood. So bring snacks after wards to eat immediately. I was tested positive for celiac disease on a gluten diet and off of gluten, your DNA will show it no matter what. It's always going to be there, unfortunately.

Link to comment
Share on other sites
cyclinglady Grand Master

Sorry, Ninja, but you are wrong!

Check out the University of Chicago's celiac website (they are one of the world's leading research and treatment centers) regarding testing:

Open Original Shared Link

There is a celiac blood panel which tests for antibodies and requires you to be consuming gluten every day for a period of about two months. If you are not consuming gluten the test results maybe invalid. Next, is a intestinal biopsy (via endoscopy) and the doctor should take at least six samples. But these two tests are not 100% accurate (but pretty close). To RULE OUT CELIAC COMPLETELY, there is a genetic test. Unfortunately, 30% of Americans have the genes for POTENTIALLY getting celiac disease. If you have the gene, but test negative on the blood panel and biopsy, a doctor might recommend going gluten-free (100%) for six months to see if symptoms improve.

To test for celiac disease, you must be consuming gluten for accurate results.

Testing for malabsorption (whether it is from SIBO, parasites, Crohn's etc.) has different requirements.

Link to comment
Share on other sites
SMRI Collaborator

You DO NOT have to eat gluten to be tested for Celiac! Don't eat gluten.

 

A CELIAC PANEL is a DNA test which is accurate for doctor to determine if you are a celiac. Celiac disease is genetic therefore being on a gluten free or gluten diet doesn't not make a difference.

 

There is a long period of fasting for this test for people like us who suffer from malabsorbtion. It will take 4 larger test tubes of blood. So bring snacks after wards to eat immediately. I was tested positive for celiac disease on a gluten diet and off of gluten, your DNA will show it no matter what. It's always going to be there, unfortunately.

 

I'm sorry but you are incorrect.  Yes, the GENE testing will be there, but the bloodwork will not if you are not eating gluten.  There is a huge difference!!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,094
    • Most Online (within 30 mins)
      7,748

    Tracym
    Newest Member
    Tracym
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...