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

If you have withdrawals going off gluten, is that a sign of sensitivity or celiac?

pjeaston

Recommended Posts

pjeaston Newbie
pjeaston
Posted

I have lived a life of migraines/headaches, extreme tiredness and sometimes bloated/gas type pains.  Recently, I have been even more tired than normal and more migraines.  I decided to see if going gluten free would make a difference and will try it for a couple of months.  On day 2 of being gluten-free, I started to get even more tired, major migraines and the most cranky I have ever been!  

I am wondering if anyone knows if reacting this way to going gluten free is a sign I'm sensitive to it/possibly celiac OR is it perfectly normal to feel this way even if I don't have a gluten problem?

I am seeing my doctor in two weeks.

Thanks!!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Before going gluten free, celiac experts recommend getting tested first as celiac tests require a person to be consuming gluten daily.  Going gluten free for as little as a few  weeks can cause false negatives.  

Read more about celiac disease from the University of Chicago.  They have an excellent website!  

Open Original Shared Link

 

pjeaston Newbie
pjeaston
Posted
  • Author

Thanks for sending the link. I knew about making sure you're eating gluten before testing, but I'm feeling so horrible I just wanted to try. It wasn't the right way to do it.  I believe they tested me years ago and it was negative. 

cyclinglady Grand Master
cyclinglady
Posted

You might not have received the full celiac panel  or you could have developed celiac disease since then.  Best to test and rule out celiac disease.  If everything  is negative, you can try the gluten-free diet.  

Why really bother?  celiac disease is a genetic autoimmune disorder that is triggered by gluten and set off by something in the environment.  So, family members should be tested.  Also, it is easier to really stick to this really hard diet, if you have a diagnosis.  I could go on, but I need to get some sleep.  Only 5 more days of school left!  

Hang in there.  I hope you get it figured out.  It is awful to feel bad!  

 

Newly Diagnosed Apprentice
Newly Diagnosed
Posted

I have celiac disease and when I began the gluten free diet I did have withdrawal symptoms.  I felt really awful for about five or six days, and it gradually got better.  I don't know whether withdrawal symptoms are indicative of having celiac, or just because it can be a major dietary change to suddenly eliminate gluten which is in a LOT of foods!  I agree with cycling lady, you need to continue to eat gluten until you have a diagnosis.  If I didn't have a diagnosis I am sure I would have "cheated" on the diet.  There are tons of wonderful gluten-free foods and in my own home it is simple to be gluten free.  It's the social aspect of the diet that is very difficult sometimes and if I didn't know for sure I absolutely need to be gluten free I am sure I wouldn't stick to it when everyone is having pizza!  Good luck! 

squirmingitch Veteran
squirmingitch
Posted

I would recommend you go back to gluten TODAY!!!! Reason? Because celiacs almost always react more strongly to gluten when they have been off it. Soooooooooooooooooooooooooooo many people have done what you have & gone gluten free BEFORE getting tested & they end up regretting that because when they go back to gluten for the challenge for testing many, many, many times they get SO sick they can not complete the challenge & then they go without a diagnosis for life.

I'm just saying.......

pricehome Newbie
pricehome
Posted
 

I would recommend you go back to gluten TODAY!!!! Reason? Because celiacs almost always react more strongly to gluten when they have been off it. Soooooooooooooooooooooooooooo many people have done what you have & gone gluten free BEFORE getting tested & they end up regretting that because when they go back to gluten for the challenge for testing many, many, many times they get SO sick they can not complete the challenge & then they go without a diagnosis for life.

I'm just saying.......

That describes me. I have been strictly gluten free for over three years and it has helped me so dramatically, that I cannot go back on gluten for the test. If I have a cross-contamination I have a reaction. 

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

Celiac.com Sponsor (A8-M):


pjeaston Newbie
pjeaston
Posted
  • Author

Thanks everyone so much. I will be patient and eat gluten again and wait for my doctors test. It seems like a lot of tests are false negatives. Is there a specific test I should request the doctor to test for? She always has me do the lab work before the appointment. Thanks. 

cyclinglady Grand Master
cyclinglady
Posted
 

That describes me. I have been strictly gluten free for over three years and it has helped me so dramatically, that I cannot go back on gluten for the test. If I have a cross-contamination I have a reaction. 

Yep, that's my hubby.  15 years of being gluten free and there's no way in !@#$ he'd go on a three month gluten challenge for a proper diagnosis.  Weird, thing is that I was diagnosed 12 years  with celiac disease after he went gluten free.  Nice though.  We are both in the boat!  

cyclinglady Grand Master
cyclinglady
Posted
 

Thanks everyone so much. I will be patient and eat gluten again and wait for my doctors test. It seems like a lot of tests are false negatives. Is there a specific test I should request the doctor to test for? She always has me do the lab work before the appointment. Thanks. 

Yes, read the link I provided earlier.  Ask for the complete test as indicated on the link.  Only one of them needs to be positive in order for the doctor to refer you to a GI for an endoscopy/biopsy.  

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.