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Can I Get Diagnosed After 2 Years Gluten Free?

Tom15034

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Tom15034 Newbie
Tom15034
Posted

Is it possible to get diagonsed with celiacs disease after being off wheat for about 1-1/2 years? Although I had an immediate black and white 100% improvement the day I quite eating wheat, I have never been diagnosed as as intolerant. After many years, I had gotten used to the burning gut after every meal and the abnormal bm's. Then I read about a celiac that had my simptoms and I tried it and the rest is history. Been a new man ever since! The medical experts I went to for years totally missed it. (What are they teaching these guys and gals?)

I have now found a GI doctor willing to do the biopsy of the small bowel. Is it too late to get a good test? If my cilli or whatever all healed back, my biopsy sample may look like a normal guys?

Tom

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KaitiUSA Enthusiast
KaitiUSA
Posted

You can NOT get an accurate biopsy now...your villi in your intestines would be healed.If you have been gluten free for a year and a half you can not get an accurate blood test or biopsy.

Another test you might want to consider is an Enterolab. www.enterolab.com

They do not require you to get back on gluten unless you have been off of gluten more then 2 years I think it is...you can learn more about it on their website. This is a good test but not widely accepted by the medical community.

That is pretty much one of your only options unless you would like to get back on gluten.

You mentioned you have been off of wheat...have you been off rye,barley,and oats as well? With celiac you have to avoid not just wheat but those as well.

Lesliean Apprentice
Lesliean
Posted

My blood work was negative (not the whole panel though) after just 3 weeks gluten-free. I was not going to eat gluten for 3 months to get a positive biopsy. And a lot of gluten sensitive/Celiacs are negative on the biopsy. I have complete confidence in Enterolab. They say the testing will come back positive within the first 2 years and if it comes back negative to consider a gluten challenge. Check out there website at www.enterolab.com.

Tom15034 Newbie
Tom15034
Posted
  • Author

Thanks for the replies.

I have been off everything that contains gluten. Maybe one reason to get a biopsy would be to see if I do have villi, I mean, to make sure they grew back.

I will check out Enterolab.

Thanks

Tom

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi, Tom,

May I ask you why you are seeing a GI doc at this point in time? Are you having other GI symptoms that did not go away with the gluten-free diet?

Gina

  • 1 month later...
Tom15034 Newbie
Tom15034
Posted
  • Author

Thanks for the replys!

Gina, to answer your question, I am seeing a GI doc because I can't sleep flat or I wake up with a stomach ache in an hour or two. An endoscopy showed a sliding hiatial hernia. I am trying to get that fixed surgically.

The reasons to get diagnosed gluten sensitive at this late date:

1. Wheat free is no easy diet. Why do it if I am not a celiac?

2. If I am, my kids should be tested and possibly other relatives.

3. If I am intolerant. maybe I am getting poisned occasionally.

Some examples of getting poisoned: (1) I travel to Mexico. Try asking the waitress what foods are wheat-free when she can't understand english and I don't speak spanish. (2) I bought and ate wheat-free fig newtons. After eating a handfull I read the lable and find they had barley flour as the main ingredient.

Tom

celiac3270 Collaborator
celiac3270
Posted

My answer to the first one would be that if you feel better without gluten, then that's raeson enough to be gluten-free...many here don't have a formal diagnosis.

The second reason makes sense, but with 1/133 having celiac in the first place, I think everyone should be tested regardless...celiac is too common and has such powerful long-term adverse effects NOT to be tested--regardless of symptoms or lack thereof. With the third, it basically comes down to how willing you are to be painstakingly careful about this--if you'd do it without knowing for sure, diagnosis isn't necessary, if you'd rather know for sure, then testing would probably be better.

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ddeatley Newbie
ddeatley
Posted

Tom,

Some recommend doing a gluten challenge for approximately six weeks prior to doing a biopsy, but I find it difficult to purposely do damage to yourself just for the test. If you have had celiac disease for quite sometime, and if it has been severe. being gluten-free for that long would allow your villi to recover, however adults don't always recover 100% of their villi when they go gluten-free. So there may be some benefit to the biopsy anyway. The issue about your children is an important one, however I would suggest that you get a Celiac Panel or a genetic test on them first before subjecting them to a biopsy. That may be all that is needed. Certainly consult with your GI doctor first. I have been fortunate to have a really good one, and while he didn't diagnose me three years ago, this year he was much more informed about it than ever.

I too have a hiatal hernia, although not enough to need surgical intervention. That may very well be the cause of your heartburn and you should notice relief once the surgery is done. good luck with everything

Dennis

jknnej Collaborator
jknnej
Posted

I'm having my biospy after 6 months gluten-free and my GI doc, who was voted best GI doctor in Phoenix, is OK doing it.

But he is also testing for H.Pylori and reflux b/c I have those symptoms as well.

But he said he will take several samples from my small intestines to test for celiac disease.

He also believes, though, from my blood that I do not have celiac disease.

I will still be gluten-free b/c I feel a LOT better than before.

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