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

pjeaston

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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!!

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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. 

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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.  

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