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Do I Really Have To Eat Gluten Again?

heathenly

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heathenly Apprentice
heathenly
Posted

...for testing purposes? After two+ weeks of eating gluten-free, the thought of having to eat it for one day (much less 90) makes me want to cry.

But I do want a diagnosis. And am scared to death I'll go through this just to be told I'm not Celiac. Not that I want to be, but I seem like the poster child for Celiac symptoms, and I want medical permission/justification to never eat gluten again.

Signed,

Awake at 3 a.m. Because of a Reaction to gluten-free Corn Pasta

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MitziG Enthusiast
MitziG
Posted

Yes, you reAlly do. By being 2 weeks gluten-free you run the risk of your antibodies already dropping, so if you are going to be tested, start eating it immediately. I don't think you would need a 90 day challenge though, since you haven't been gluten-free too long. Just start eating it and schedule the tests. Be sure it is a full panel.

And be prepared for a negative result. It doesn't mean you aren't sick from eating gluten. 30% of celiacs will have negative blood work, and non-celiac gluten intolerance will always test negative.

roxieb73 Contributor
roxieb73
Posted

I did the same thing and had the outcome you fear. I was told because of my genes that I am not celiac. However I do have Lichen Planus which is an auto immune reaction to Gluten. I also have a lot of the symptoms. Including Vitamin deficeincy. My Vit D was critically low. Then I have iron deficeincy anemia, so low iron, b12, folic acid. Low normal mag and who know what else. I also have many neurological symptoms. But not Celiac. lol I believe in the future they will include my gene type in the Celiac family in the mean time... I have been told to eat Gluten Free? and take a crap load of vitamins. Hmmm sounds like Celiac to me.

Bottom line even if they say you are not Celiac doesn't mean Gluten isn't your problem! ;) If you want try the diet and just see if it helps. If you really want the diagnosis YES you will need to eat gluten and still might have a negative reaction. Sucks but it is what happens.

GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

heathenly Apprentice
heathenly
Posted
  • Author

Yeah, I know gluten is a problem, but if it's Celiac I need a formal DX. It would be useful for my family. My son has Crohn's and I think maybe other people in my family have gluten sensitivities or Celiac. Suddenly lots of things would make medical sense!

Back to gluten until testing! Hopefully I didn't do too much "damage" (ha) by staying gluten-free for this short period of time... last week I would have been thrilled for an excuse to eat gluten; this week I dread it. So not worth it.

heathenly Apprentice
heathenly
Posted
  • Author

And thank you all for the replies!

MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

Yes, unfortunately, you do. I was gluten-free for 18 months quite successfully, but have been on gluten for two months now for testing. And you have to eat it for at least two months, preferably more. My blood tests were negative after one month, but positive after two. By the time my scheduled endoscopy/biopsy rolls around, I'll have been eating it for three.

While it's fun to eat all the gluteny foods you normally can't, and REALLY nice to not constantly be checking ingredients, it's rough. I've been sick/getting sicker over the past two months and I'm so ready to be done. Good luck though!

did you eat foods with gluten for every meal?

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GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

Not every meal, but I'd say probably at at least 2 meals. And maybe a few snacks.

heathenly Apprentice
heathenly
Posted
  • Author

I've been eating gluten again since Friday (in preparation for tomorrow's GI visit, and likely, blood test), and I am an emotional, bloated mess. Hate this. Also, my nasal allergies have all the sudden started back up, and my sleep problems. Fatigue. Bleh. Energy level low. Can't wait to not have to do this anymore.

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