1

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Should I pursue further gluten sensitivity/celiac diagnosis?

Answered on August 19, 2014
Created May 03, 2013 at 10:55 PM

I've been paleo/primal-ish for about two years. That said, I admit to a decent amount (5% of overall intake?) of gluten-containing "cheats" because I didn't think I reacted to it. At least I didn't notice an obvious change after total elimination for 3 weeks.

I have been seeing a naturopath and one of the things we've been looking at is balancing my hormones. She ordered an Adrenal Stress Index from Diagnostechs and I just got the results yesterday. Several of the levels are non-optimal, but one thing I'm stuck on the most is that I tested positive for IgA anti-gliadin antibodies (26 U/ml, anything over 15 is positive). The test also showed depressed total IgA (10 mg/dl, 25 is the low end of normal).

I can't seem to find much about salivary testing for gliadin antibodies except stuff indicating it probably isn't the most reliable at testing for full-blown celiac. I realize that I could still be reacting to gluten without having celiac disease and I should probably go gluten-free regardless. However, it also seems like figuring out if I have the other antibodies or even villus atrophy would also be a good idea -- especially while I am still "glutened."

The main thing keeping me from wanting to go down that road is that my husband and I are trying to conceive. It's been a long haul already as I've had two miscarriages in the past year (I guess that could be a celiac symptom? But it could be many other things too.). So, I kind of just want to do whatever it takes to heal my body NOW and not concern myself with getting an actual diagnosis, if there even is one to be gotten.

I also think that, if I were to be diagnosed with celiac, it might encourage my family members to get tested because, now that I seriously consider the issue, I think some members of my family have more overt indications of possible gluten intolerance or celiac than I do: my father had gallbladder issues and finally had it removed last year and my younger sister used to get crazy stomach pains and eczema when she was younger but I don't think she was ever tested for celiac. And I have two grandparents who died of dementia.

Thoughts? Is it worth it to mess around with further testing?

Medium avatar

(1097)

on May 04, 2013
at 11:42 PM

I suppose that's true. It only takes a couple bites of direct gluten consumption to send me straight to the bathroom most days, but if one wanted to know for surety, I can see how testing is the way to go. I'm just so anal retentive about avoiding gluten myself that it didn't register why anyone would *have* to get it tested over just avoiding it because, well... it's gluten.

72cf727474b8bf815fdc505e58cadfea

on May 04, 2013
at 10:18 PM

Because there's a huge difference between celiac-level sensitivity and everything else. There's a huge difference between "don't eat bread" and "don't eat anything that could have trace cross-contamination."

3327924660b1e2f8f8fc4ca27fedf2b2

(2919)

on May 04, 2013
at 01:39 AM

You already know gluten is not optimal for anyone on this planet, celiac or not. Do you really need a test to tell you that you can't have gluten?

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5 Answers

2
197651282ddd8d675b974ee811d2269e

on May 04, 2013
at 01:25 PM

If I were in your shoes, I would get the biopsy. That way you would know for sure whether you must absolutely avoid gluten. Intestinal lining does not have nerves so you can be damaging it without feeling any pain. In your case, it is important to know for sure so that you know whether or not can can have those occasional cheats or at least not have to be so careful all the time. I'm a celiac, diagnosed about a year ago. In the beginning it was okay to be strictly gluten free because I felt so much better but, as time went on, it became harder in many situations because I cant ever eat anything at birthday parties, potlucks, most social situations, etc. Turns out that most of my socializing involved copious amounts of food and i hate to be the annoyingly finicky person who asks whats in every single dish at a potluck. IMHO

2
7841848bd0c27c64353c583fb7971242

(7275)

on May 04, 2013
at 02:42 AM

When I went gluten free, I thought: I don't need the test results, there's nothing that would make me want to eat gluten again because of how bad it makes me feel. I got the blood test but not the biopsy, as the blood test was already a few weeks after I went gluten free and I wasn't willing to re-challenge. So here I am, a couple years later, really wishing I had gotten a biopsy. It would let me know for sure whether I have celiac disease or non-celiac gluten sensitivity, and it would allow me to participate in research studies if I wanted to. Yeah, I have no problem avoiding gluten (including trace amounts), but I'm still curious.

Also, I've been suffering from b-vitamin deficiency (or at least I assume so, since supplementing with methyl-b12 and folate have made a big impact on my functionality). It would be nice to have a confirmation of how messed up my intestinal villi were, as confirmation of why I was so deficient.

The miscarriages thing could possibly be a folate deficiency. If you haven't already, maybe try a pre-natal supplement with folate (instead of folic acid). Pure Encapsulations makes one, I think. Chris Kresser mentioned it on his website.

1
13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on May 04, 2013
at 03:51 PM

Some fertility clinics are testing their clients, FWIW.

If you are celiac, you would want to heal up before pregnancy to be certain you are absorbing the nutrients needed.

Consider posting over at celiac.com

Here's an article on reasons to test or not http://celiacdisease.about.com/od/CeliacDiseaseTests/a/Why-Get-Diagnosed-Celiac-Gluten-Sensitivity.htm

Here's a checklist on who should test, may be handy for your family as well: https://docs.google.com/viewer?url=http%3A%2F%2Fwww.southernarizonaceliacsupport.org%2Fdisease%2Fsymptomchecksheet.pdf

1
F5a0ddffcf9ef5beca864050f090a790

(15515)

on May 04, 2013
at 06:53 AM

Get tested. Absolutely. Not only get tested, but get the most detailed comprehensible testing done possible.

If I were a doctor, this is what I would have asked from you:

  1. A complete comprehensible stool test (DNA with GI effects by Metametrix or some other company)
  2. A complete multi-step urine sample for everything possible
  3. A complete blood test including antibodies for any parasites/diseases/anything possible.
  4. Genetic testing for gluten intolerance.

You need to know what causes your gluten intolerance, what causes inflammation.

An additional test to take and it can be taken only based on specific symptoms that you might have is a SIBO comprehensive methane/hydrogen breath test.

Plus, you need to repair your gut flora before you conceive your baby.

1
Medium avatar

on May 04, 2013
at 02:20 AM

Why waste time testing? Just stop eating it. I know that 5% can feel hard to let go, but I've been completely and utterly, 100% no-gluten no-legume for the past month and I never think about it anymore except to acknowledge how good I feel.

Medium avatar

(1097)

on May 04, 2013
at 11:42 PM

I suppose that's true. It only takes a couple bites of direct gluten consumption to send me straight to the bathroom most days, but if one wanted to know for surety, I can see how testing is the way to go. I'm just so anal retentive about avoiding gluten myself that it didn't register why anyone would *have* to get it tested over just avoiding it because, well... it's gluten.

72cf727474b8bf815fdc505e58cadfea

on May 04, 2013
at 10:18 PM

Because there's a huge difference between celiac-level sensitivity and everything else. There's a huge difference between "don't eat bread" and "don't eat anything that could have trace cross-contamination."

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