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Opinions Please On Stopping Gluten And Biopsy

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I had a biopsy yesterday for Celiac.  The doctor said my duodenum appeared normal.  I could still have Celiac though, right?   I had a negative blood panel last week.


However, from mid August to mid September (for 21 days) I was on the ketogenic diet.  So no gluten.


Then a few weeks ago, blood work via my oncologist indicated I have iron deficiency anemia.  Ferritin was 6 and they say that's pretty low.


So far there are no other reasons for the anemia (no bone marrow issues, no gastro bleeding, no girl issues).  I have been tested for those over the past week.


So what do you think?  Is 21 days of no gluten then 1 month of gluten good for a positive result if Celiac?


Thank you in advance!


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Did your doctor take six or seven tissue samples during your endo (biopsy)?  A visual means nothing!  My only symptom was anemia besides having been diagnosed with thyroiditis some 15 years ago.  But, I do have Thalassemia too which is another type of anemia and causes low hemoglobin too.  My ferritin levels have been as low as a 2.  


I can't answer your question about being gluten-free for 21 days and then eating it for a month before the blood test, but my blood test was barely positive.  My biopsy though showed moderate to severe damage.  


I hope this helps!


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Hi Michiganlynn,


If you are concerned it may not be a long enough time on gluten, you might be able to delay your doctor appointment for a couple weeks more.  It used to be the standard time for a gluten challenge was 3 months.  There is no guarantee it will be be a positive test of course.   Have you noticed any change in symptoms from stopping gluten before?  If symptoms changed on stopping gluten previously, that is  good indicator something is going wrong in your body when you eat gluten.


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    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. Welcome to the forum!  
    • Couldn't have said it better!  
    • If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel.  This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure.    That way you can rule out celiac disease and THEN worry about the possibility of other AI issues.   I did this last summer.  I got really sick.  My GI thought SIBO right off the bat.  But I asked just to be tested for celiac disease.  Sure enough, I had elevated antibodies.  No need to test for SIBO or anything else at that point.  I just waited a few months for symptoms to subside.   Good Luck to you!  
    • That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of: Get tested before starting the gluten-free diet.
      Get your vitamin/mineral levels tested also.
      Don't eat in restaurants
      Eat only whole foods not processed foods.
      Eat only food you cook yourself, think simple foods, not gourmet meals.
      Take probiotics.
      Take gluten-free vitamins.
      Take digestive enzymes.
      Avoid dairy if it causes symptoms.
      Avoid sugars and starchy foods. They can cause bloating.
      Avoid alcohol.
      Watch out for cross contamination. Helpful threads: FAQ Celiac com Newbie Info 101
    • yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.
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