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Interpret Results Please


organicmama

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organicmama Contributor

I just received my Enterolab results back. I had prior serological results that showed no abnormal IgA results, just IgG. Can someone help me interpret, please?

Fecal Anti-gliadin IgA


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ravenwoodglass Mentor

You may want to eliminate all at first and after a couple of months try consumeing the items you had a low positive for one at a time for a couple weeks to see if you react. You definately need to do the gluten-free diet though and it would be a good idea to suggest that your family be screened for celiac. Just because your blood tests were negative doesn't mean all family members will be. It doesn't really matter whether you are NCGI or celiac as the need to be strict with the diet is the same for both.

Skylark Collaborator

Questions:

1) Is it safe to assume I have NCGS and not celiac?

2) I know Enterolab's views, but do I really need to be concerned with results in the teens? It is awfully hard to limit soy and egg for me. Gluten-free Casein-free has not been hard.

3) Should I tell my mother and siblings to be tested at all if they cannot afford Enterolab testing? They would do only what insurance covers (serological).

4) Should I be concerned that these may not be accurate given that my serological Anti-Gliadin IgA wAs normal?

5) Since all four foods showed positive, should I have testing done for other IgA foods?

6) I am being told by my doc to eliminate and then consume a bunch of a suspect food a month later. Is that prudent?

7) Should I be seen by a specialist? If so, why?

1) It is about 90% safe to assume you are not celiac if you have negative blood tests and a negative biopsy. If you have only had serology, it about 75% safe to assume you are not celiac.

2) I would not be concerned about Enterolab results at all, nor would I pay for them.

3) Serology never hurts!

4) Enterolab turns up fecal anti-gliadin IgA in 29% of people with no stomach trouble and no gluten sensitivity. You can draw your own conclusions.

5) You can get the IgA testing to guide an elimination diet. It is not diagnostic.

6) ABSOLUTELY eliminate and challenge. It's the only surefire way of identifying food sensitivities.

7) If you are basically healthy and trying to troubleshoot GI issues, I'd say to eliminate/challenge with major allergens before you worry about a specialist.

organicmama Contributor

So how do you know you are gluten sensitive? I have no GI troubles, just autoimmune and neurological issues. I have been Gluten-free Casein-free for about two months and feel better mentally but not physically. I have read it can take quite some time to feel better when you don't have GI troubles if gluten is an issue.

Is there a good guide on doing an elimination diet? I still need to maintain a good amount of protein in my diet, so I'm not sure where to begin.

RollingAlong Explorer

Questions:

1) Is it safe to assume I have NCGS and not celiac?

No. Enterolab offers another test, the anti-TTG which is specific for celiac, but there's no published research to support that test as a stool test. There is research that supports anti-tTg as a blood test. So you have ruled in gluten intolerance and you have not ruled out celiac, which is an autoimmune condition.

I think it is safe to assume that a strict gluten free diet and some additional diet changes is a good idea.

2) I know Enterolab's views, but do I really need to be concerned with results in the teens? It is awfully hard to limit soy and egg for me. Gluten-free Casein-free has not been hard.

It is possible that the soy and egg intolerance may be temporary. My husband's results were very similar to yours and he has added eggs back and occasionally soy. Soy just isn't something he eats very often. The dairy intolerance is more likely, statistically, to be permanent, from what I have read. I would urge you to make the effort, it can help you heal up a lot faster.

3) Should I tell my mother and siblings to be tested at all if they cannot afford Enterolab testing? They would do only what insurance covers (serological).

Just because your blood tests were negative doesn't mean that their's would be. And they can still try the diet, regardless. I would encourage them to test, by bood and then to give the diet a try of at least a month.

4) Should I be concerned that these may not be accurate given that my serological Anti-Gliadin IgA wAs normal?

None of these tests (blood, stool, even the biopsy) are perfect. It is pretty standard to eliminate (remove from your diet) and challenge (add back in to the diet) to see how you react.

5) Since all four foods showed positive, should I have testing done for other IgA foods?

I wouldn't bother at this point, a lot of things can test positive early on but you can heal up fast too. Wait and see how you feel in 3-6 months.

6) I am being told by my doc to eliminate and then consume a bunch of a suspect food a month later. Is that prudent?

I would wait longer, but if you are young person and you feel better right away, then maybe that isn't too fast. I would wait until I felt pretty good for at least 2 weeks. That took my husband about 3 months.

7) Should I be seen by a specialist? If so, why?

I am a big fan of the "proper" diagnosis. I think it helps some people stick to the diet and it helps get doctors to help you with the various things you might need, like bone density scans or nutritional panels. Celiac is an autoimmune condition and that has some fairly serious implications. Testing can also be important for family members, including prospective children. But this is just my opinion, and many people do not feel this way. The problem is that the best time to be tested is now, before you change your diet. You really can't change your mind about this later; at least, it is very, very difficult.

The specialist you would need is a gastroenterologist. I would contact the local celiac support group for a referral. You want some one very experienced with celiac. it would be worth travelling to a different town, if need be.

edited to add - Best wishes! and keep us posted

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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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