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lizard00

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lizard00 Enthusiast

Does anyone know how long AFTER going gluten-free your tests will show up positive? I know that you have to be on gluten 1-3 months before testing to hope for the best from a test. I was about a month gluten-free before I had the bloodwork done. The PA ordered the test and when I asked her if I had to be eating gluten, she looked at me like I had two heads and said no, we just test for the antibody... WOW

So anyway, now I am going to a GI tomorrow for another problem, but I was going to mention this to him. Just wondering, I haven't read anywhere that states how quickly the antibodies disappear...

Anyone know?


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tarnalberry Community Regular

it varies *GREATLY* from person to person. it entirely depends on how much damage you've had, how quickly you heal, and how long you've been gluten free, and those things are not entirely interdependent. after a month, you definitely run a risk of showing a false negative. I showed inconclusive after two weeks (but I don't think I had been gluten intolerant very long. (I think it had been triggered about nine months before I was tested), and I don't think I had much damage, and I heal fairly quickly.)

happygirl Collaborator

I agree----it can vary greatly, as tarnalberry noted.

The nutritionist at the Univ of MD Celiac Center has said that for some people, changes in the biopsy can be seen within one week of a gluten free diet. Some of the blood tests can correspond to the damage in the intestine.

ravenwoodglass Mentor

You can also be in total end stage celiac and still show up negative on the blood tests. Waving both arms in the air vigorously here :D Do not base your need for the diet solely on blood or even endo. Judge by your response to the diet followed strictly. As mentioned the time for the antibodies to leave the body varies greatly. Are you getting any relief fromt the diet?

lizard00 Enthusiast

I have experienced tremendous results from the diet. My headaches are pretty much gone, and my fatigue is slowly going away. I can at least make it through the afternoon without napping now. :)

As for the appt with the GI:

When I told him that I did an elimination diet to determine if I was allergic to something, and found that it was wheat; whether an allergy or an intolerance, I don't know, nor at this point is it important. I was not going to undergo another month or so of feeling horrible just to find out. I wasn't in his office for that either. It was a follow up appt for a trip to the ED on account of my stomach feeling like it was on fire... which he really didn't talk about.

The ED Dr gave me pepcid, which constipated me... SO the GI's solution was to give me a laxative and another script, which I decided last night to not get filled. I just don't think that going on a laxative is a good idea. He didn't seem to care about the pepcid, so I am going to try it for a few days without.

However (and this is the kicker), he said: "What happened was this, when you went on your elimination diet and cut out a food group, you changed the motility of your bowels. You essentially did the Atkins diet, and changed everything. Now we have to get it regulated."

To which I replied... NO! I didn't do the Atkins diet, I made sure to get my carbs from alternative grains (Nutrition is what I want to do!) besides which I've already told you that several other family members have digestive problems, 3 of 4 of them with wheat/gluten.

Then he paid attention.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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