Lab results ???

[ldubois7]

I was diagnosed with LC in late 2012.
I have done enterolab testing 3x’s now.....each time my gluten reaction is higher!
(The good news is that for dairy, soy, & eggs, the scores went down, finally).


Fecal Anti-gliadin IgA 108 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 19 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 12 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units)


The interpretation of the test states that ...

Interpretation of Fecal Anti-gliadin IgA: Intestinal IgA antigliadin antibody was elevated, indicating that you have some residual dietary gluten sensitivity, although the value is greater than your previous result. Although antigliadin antibody can be produced in measurable quantities in the intestine for months, even a few years after going on a gluten free diet, gluten may be in your diet unknowingly (in food not preprared by you including by restaurants and relatives, who may not realize even a little bit goes a long way; in medications; in foods labeled gluten-free by a manufacturer that actually contain trace amounts of gluten; in non-food items like toothpaste or cosmetics, etc.). Increased levels of antigliadin antibody following a strict gluten-free diet may also reflect a more healthy immune system, which in the past, because of gluten sensitivity, was not able to make as much antibody as it should have when exposed to gluten; so the higher value now may in fact be a sign of improvement. Regardless of the reason, it is recommended that you maintain a strict gluten free diet.

I have changed over (years ago) to all gluten free products including cosmetics, shampoos, supplements, etc.

I do not eat out, I make my own food.
I do not eat processed foods. I do not eat grains.

I eat veggies, some fruit, wild salmon & haddock, game meats. I bake with coconut flour, and use nut butters that a make myself.

I have no idea what else I can do....my gluten score on the test has doubled in the last 3 years!!!

Any insights out there?

[tex]

Hi Linda,

Increased levels of antigliadin antibody following a strict gluten-free diet may also reflect a more healthy immune system, which in the past, because of gluten sensitivity, was not able to make as much antibody as it should have when exposed to gluten; so the higher value now may in fact be a sign of improvement.

I think you've just got a unique immune system that's remaining supersensitive much longer than normal. I've never seen anyone else state what's in the above quote, but I've long suspected it to be true. I'm happy to see that someone else agrees.

Here's a risk that I believe exists in many areas, although I have seen no published proof of this:

I suspect that the prevailing winds often carry gluten in the dust from flour mills, wheat harvest operations, baking facilities, loading and unloading trucks with either wheat grain or bags of flour (even in supermarkets as bags of flour are handled), etc., for many miles (e.g. the dust storms of the 1930's). Wheat flour particles are much lighter than soil dust, so they will carry much farther. These particles settle out everywhere on any exposed surface, thus providing a frequent source of micro contamination for virtually any exposed food. This would be enough to be detected by any extra sensitive immune system. For all I know, it may be enough to be detected by virtually any immune system (that's sensitive to gluten).

But that's just my opinion.

This would mean that your immune system might/should be hypersensitive to vaccines. Do you react to vaccines?

Tex

[ldubois7]

Hi Tex!

I haven’t had a vaccine in a long long time, so I don’t know the answer to your question.
But..... my son is a type 1 diabetic (for 18 years). He did react to the pertussis vaccine as an infant.
That’s all I know.

I tested with enterolab again because I still get the bloating daily. It’s the bloating that I’m trying address.

Do you think that the minuscule amounts of gluten that I might be getting could cause the bloating?
I did read once that there are a lot of gluten free labels that really contain some gluten....and aren’t they allowed small amounts, and can still call it gluten free?

I might do the C-1 panel, too....but what’s the point?

[ldubois7]

Tex and Gabes,

Here is my reply from Dr Fine regarding my new test results.

Any ideas where I can start?



No Linda, that is concerning, especially the gluten value.

I'm afraid it implies there is a contamination somewhere.

The gluten reaction is likely driving the others also.

It is also possible that a more generalized inflammatory reaction to other antigenic foods is inflaming all antibody production.

Most people today need a full anti-inflammatory diet and no "gluten-free" products of any kind or even grains.

Are you eating gluten-free products? They are allowed to contain up to 20ppm gluten.

Your much improved fecal fat score means you are well healed but likely still some immune stimulation.

So good news, a little bad news here.

Dr. kenn

[tex]

Hi Linda,

Yes, I believe that micro contamination by gluten can cause symptoms for some of us. The fact that your anti-gliadin antibody score was higher than the previous time indicates that your exposure to trace amounts of gluten is still continuing. And yes, the legal 20 ppm threshold for certification as gluten-free is a cruel joke. 20 ppm of gluten is not gluten-free by any stretch of the imagination. The percentage of the population that will react at that level is very small (much less than 10 %) but that still amounts to a lot of people. As I recall, Australia sets the limit at 5 ppm, so residents there are very unlikely to have a problem with trace amounts of gluten. Besides, even it it doesn't trigger a reaction, 20 ppm is enough to keep the background inflammation elevated just enough so that the immune system remains extra-sensitive. It never gets a chance to relax and return to a normal level.

When you add the 20 ppm in GF food to the gluten particles floating around in the air, some of us can't tolerate that much.

The bottom line is that I basically agree with D. Fine. Trace amounts of gluten appear to be continuing to drive your elevated anti-gliadin antibody level. Locating the source, though, is much easier said than done.

I'll grant you, not all GF processed food carries a 20 ppm gluten level, some naturally have far less. But the point is, it costs money to maintain lower levels of gluten, so we can be pretty sure that manufacturers are not going to spend any extra money to suppress gluten levels any lower than they have to be to comply with the labeling laws. If their stockholders found out they were wasting money on that, they would "scream bloody murder".

Tex

[ldubois7]

Tex,

For my antigliadin IgA to have doubled in the last three years, I’m hard pressed to know where that’s coming from.

Maybe my supplements? I use Pure Encapsulations, and Seeking Health products that are GF.

I have been eating plantain chips that claim to be GF.
I have a coconut cereal that claims to be GF.
Also, I use brown rice flour to coat haddock sometimes.

Other than that, I make everything I eat from whole ingredients....wonder if it’s the coconut flour?

Do you think I should do more testing with enterolab to see about the grains, and nuts?
I use nuts to make nutbutters.

[tex]

I'm not sure that it would be beneficial to do additional testing, because that's probably just going to make you feel worse when you see the results. Doubling in the last three years is not good, because that's almost surely going to make your immune system super sensitive, implying that it may react to foods that would not normally bother it. But I can't fathom how that could be happening with a careful diet that looks to be safe. Unless there are some odd exceptions to the test, an increase in the anti-gliadin level doesn't necessarily require an increased level of contamination. It could be a response to a miniscule rate of contamination that has continued for years. Levels go up with time if the exposure level is held reasonably constant. So we may be talking about persistent low-level contamination. But I'm pretty sure that the problem has to be gluten (cross-contamination) if your anti-gliadin level is increasing.

Maybe you're not the only one with this problem. After all, most people test only once, and don't follow up.

Tex

Do you use any high-risk flours, such as blends that contain millet? Millet flours are notorious for occasionally exceeding gluten limits significantly.

[Gabes-Apg]

I have been eating plantain chips that claim to be GF.
I have a coconut cereal that claims to be GF.
Also, I use brown rice flour to coat haddock sometimes.

Other than that, I make everything I eat from whole ingredients....wonder if it’s the coconut flour?

these three are high risk for minuscule amounts of gluten
unless the items are handled and packaged by companies that have quality gluten free factories.

I heard the other day that the GF brand 'Orgran' that no staff member is allowed to bring any gluten, dairy, soy etc into the manufacturing plant in their lunch /snacks etc.
and gluten free status in Australia is 5 parts per million

[carolm]

Hi Linda- I appreciate your posting your results. This is very interesting.

This is a pure shot in the dark, but there have been times that I’ve wondered if the almonds I was eating where cross contaminated. I had been getting them from Trader Joe’s and for the most part was okay- then I had a couple of bags that the first serving or two I ate from those bags- I felt like I had been ‘glutened’. I don’t know how or where nuts are processed but I know how I feel when I’ve gotten glutened- and there was definitely something about those almonds. I’ve switched to Blue Diamond and have had no problems so far.

I know you have researched everything so thoroughly that I have no ideas where you might be getting gluten. I definitely want to be following your detective work on this post.

Best wishes,
Carol

[brandy]

I've definitely been glutened from nuts I've bought at the Charlotte NC airport.

In fact I talked with a Whole Foods worker this week to see if they had any nuts that were not processed in a facility
that processes wheat. They did not have any nuts on hand that met those requirements so I did not buy any.
I think the worker thought I was "nut job."

[carolm]

. Good one Brandy. I’m afraid people might have thought that about me a few times.
They probably still do .

[ldubois7]

Brandy, Carol, Tex, and Gabe’s,

I do appreciate all your suggestions and information....

I use Sams club nuts, and it does not state that they’re processed in a gluten free facility.
I rinse them and soak them before dehydrating them, so I guess I thought I was getting rid of anything that may be on them.
I’ll call and see if their facility processes grains.

I’ll just tighten my belt even more (if that’s possible).

A question that came to me....because I assumed I was totally gluten free, I am now rethinking my diet. I will go along fine for a certain amount of time (a week or 2 or 3) before I will have to use the bathroom for 4-5 times in a day. That usually lasts a day or two....no pain, just the bloating and more frequent bathroom trips. I thought I just overate, and that was my reaction.

Maybe I’m getting ‘glutened’ as Carol and Brandy mentiond....I just assumed it was my system, and tolerated the interruptions....hmmmmmmm.....was I that stupid?

I’ll keep a journal now, and be able to see what I’ve eaten before I have an episode.

Wow! This never gets easier....

[ldubois7]

I had purchased plantain chips before I got my recent test results showing that I was still being contaminated with gluten somewhere.....

I don’t think I’ve seen this label from the Celiac Sprue Association before.
Does it mean I should trust it?


The CSA Recognition Seal proves the company's commitment to a quality gluten-free product for celiac and gluten-sensitive individuals. A gluten free product doesn't contain amino acid sequences in wheat, barley, rye and common oats. CSA Recognition Seal products are tested using the strictest test presently available, the companies submit the analysis of ingredients and manufacturing procedures to assure the products meet the requirements for the CSA Recognition Seal.

[tex]

I wasn't even aware of that certification program, but it looks good to me. It has the lowest limit of all the rest, matching Australia's limit (5 ppm). That's much better than the FDA's limit of 20 ppm. Here's a comparison with other similar programs, sponsored by other organizations:

https://www.google.com/url?sa=t&rct=j&q ... 0cdPpaHGH1

I would think that plantain chips with that seal should be quite safe, especially since there's no reason why plantain chips should have a gluten problem to begin with.

Tex

[Gabes-Apg]

this type certification is how products produced overseas get approval to be sold in Australia.

Quite alot of the GF products mentioned by USA residents on this forum, can not be shipped to Australia as they a)labeling does not meet our standards b) it has more than 5ppm of gluten.

this is one of the reasons I encourage new members to avoid GF processed foods/baked goods in the early stages of healing as if they are super sensitive to Gluten they are continuing to trigger inflammation reactions in their bodies