Will Villi Heal If I'm Still Borderline Iga 20 On A Strict gluten-free Diet?

[inmygenes]

First diagnosed and eating gluten my IgA was 100+ about 6 months later on a strict gluten free diet it was IgA 29 borderline and now a year and a half later without gluten it's 20 which is still borderline. Does this mean my intestines are still being damaged with tiny amounts of gluten contamination, will they be able to heal? What is your experience with healing?

[Emilushka]

From a medical standpoint, the lower you can get your IgA (closer to normal) the better for your chances of healing. I don't know what the magic number is that will allow you to heal, but higher antibody levels mean that there's a response to SOMETHING, and unfortunately with Celiac, the response is the problem. So my guess is that you'd need to get your IgA to normal range to heal fully.

However, you may have a personal "normal" range that is higher than other people. It's a possibility. If that were the case, you might heal just fine with your IgA at 20.

How do you feel? Do you have symptoms still?

[Skylark]

You may need to try a very strict diet where you're not eating processed foods. Also, some celiacs react to oats and casein as if they were gluten so stop eating oats, and consider removing dairy from your diet as well. I'm not diagnosed so no experience to share, but I generally feel better if I don't eat processed "gluten free" cookies, breads, and so forth as they all have a chance for minor CC.

[BoydBT]

You may need to try a very strict diet where you're not eating processed foods. Also, some celiacs react to oats and casein as if they were gluten so stop eating oats, and consider removing dairy from your diet as well. I'm not diagnosed so no experience to share, but I generally feel better if I don't eat processed "gluten free" cookies, breads, and so forth as they all have a chance for minor CC.

What is CC?

[psawyer]

What is CC?

Cross contamination: the unintentional contamination of a product from another product or source.

[Skylark]

Cross contamination: the unintentional contamination of a product from another product or source.

Thanks, Peter. The board expands the letters G F to gluten-free but I forget it doesn't expand CC. That might be something nice to add.

There was a recent study showing that some flours that would normally be gluten free, like rice or soy, had enough gluten to cause problems for celiacs. The study didn't sample enough products to make any guesses about how often it happens. It's probably a result of manufacturers not cleaning mills well enough, or maybe grains of wheat getting into other foods in grain elevators and trucks. Even the so-called gluten free breads and baked goods are usually tested to be below a cutoff of 10 or 20 ppm, as that is low enough for the tests to be reliable and to not bother many celiacs. I'm sure a lot of their food has less gluten, but the occasional 20 ppm loaf may be enough to keep you from healing.

We had one fellow here who didn't heal until he went to a completely whole foods diet and stopped eating processed foods entirely. Another person has to grind her own flours from grains she gets from certain suppliers who do not process wheat at all. Also, not all celiacs can tolerate things like distilled vinegar or whiskey, even though they do not have detectable amounts of gluten.

[inmygenes]

From a medical standpoint, the lower you can get your IgA (closer to normal) the better for your chances of healing. I don't know what the magic number is that will allow you to heal, but higher antibody levels mean that there's a response to SOMETHING, and unfortunately with Celiac, the response is the problem. So my guess is that you'd need to get your IgA to normal range to heal fully.

However, you may have a personal "normal" range that is higher than other people. It's a possibility. If that were the case, you might heal just fine with your IgA at 20.

How do you feel? Do you have symptoms still?

I think I'm very sensitive to gluten and sometimes get stomach pains and bloating. It's hard to tell as I never had extreme symptoms but was always malnourished and full of toxins. Now I'm much healthier and my mineral levels are normal so I'm absorbing better which is a good sign. According to my natropath I'm no longer full of toxins from undigested food. I'm going to try and get the result lower than 20 but my doctor said that it's almost impossible to get it lower than that.

[inmygenes]

You may need to try a very strict diet where you're not eating processed foods. Also, some celiacs react to oats and casein as if they were gluten so stop eating oats, and consider removing dairy from your diet as well. I'm not diagnosed so no experience to share, but I generally feel better if I don't eat processed "gluten free" cookies, breads, and so forth as they all have a chance for minor CC.

Yes I think you're right and I do get a reaction to oats and have stopped eating them. I try and only eat my own bread and cakes etc but even the flour sources are sometime dubious. Recently I've been considering giving up dairy as I get some negative effects from it. So I think gradually I'll weed out potential sources and triggers.

[inmygenes]

Thanks, Peter. The board expands the letters G F to gluten-free but I forget it doesn't expand CC. That might be something nice to add.

There was a recent study showing that some flours that would normally be gluten free, like rice or soy, had enough gluten to cause problems for celiacs. The study didn't sample enough products to make any guesses about how often it happens. It's probably a result of manufacturers not cleaning mills well enough, or maybe grains of wheat getting into other foods in grain elevators and trucks. Even the so-called gluten free breads and baked goods are usually tested to be below a cutoff of 10 or 20 ppm, as that is low enough for the tests to be reliable and to not bother many celiacs. I'm sure a lot of their food has less gluten, but the occasional 20 ppm loaf may be enough to keep you from healing.

We had one fellow here who didn't heal until he went to a completely whole foods diet and stopped eating processed foods entirely. Another person has to grind her own flours from grains she gets from certain suppliers who do not process wheat at all. Also, not all celiacs can tolerate things like distilled vinegar or whiskey, even though they do not have detectable amounts of gluten.

Thanks Skylark this is interesting to read. I read recently that gluten flour can take 2 hours to settle out of the air. It gets everywhere! I try and eat a whole food diet but do have a few processed things. I didn't know about the whiskey and distilled vinegar, that's worrying. I guess it's just trial and error finding out what works.

[SYBERBUNNI]

Yes I think you're right and I do get a reaction to oats and have stopped eating them. I try and only eat my own bread and cakes etc but even the flour sources are sometime dubious. Recently I've been considering giving up dairy as I get some negative effects from it. So I think gradually I'll weed out potential sources and triggers.

When you guys are talking oats. Are you talking about non gluten-free oats or oats in general?

[Skylark]

Oats in general. Oats have a gluten-like protein called aveenin. A few celiacs react to aveenin as if it were gluten.

Oats that weren't specially grown and processed to be gluten-free are a problem for all celiacs.

[BoydBT]

What about Bob's Red Mill Oatmeal?

[Skylark]

If you tolerate oats, the Bob's Red Mill oats are pretty carefully grown and tested so they should be safe.

[inmygenes]

Oats in general. Oats have a gluten-like protein called aveenin. A few celiacs react to aveenin as if it were gluten.

Oats that weren't specially grown and processed to be gluten-free are a problem for all celiacs.

I've found I react to pure oats (uncontaminated) and recently read that the Canadian government are doing a study to see if oats cause intestinal damage in celiac patients that react to them. I'm very interested to hear the result.

[Skylark]

There are rather a lot of studies on oats already done. Most celiacs tolerate them, but there are very clear examples of people with activated T-cells, anti-avenin antibodies, and mucosal damage from oats that were tested and gluten-free. I would guess from the literature that maybe 10% of celiacs cross-react to oats. My number may be high as it's a gut feeling and I haven't done a proper meta-analysis. Unfortunately, if the Canadian government uses a small cohort they may not catch the oat-sensitive people. Another problem with the way clinical trials are structured is that celiacs who react to oats tend to feel ill and drop out of the studies.

[inmygenes]

There are rather a lot of studies on oats already done. Most celiacs tolerate them, but there are very clear examples of people with activated T-cells, anti-avenin antibodies, and mucosal damage from oats that were tested and gluten-free. I would guess from the literature that maybe 10% of celiacs cross-react to oats. My number may be high as it's a gut feeling and I haven't done a proper meta-analysis. Unfortunately, if the Canadian government uses a small cohort they may not catch the oat-sensitive people. Another problem with the way clinical trials are structured is that celiacs who react to oats tend to feel ill and drop out of the studies.

Here are some recent studies by the Canadian Government on the safety of Oats. It seems a little inconclusive but generally as you also said most people with celiac can handle them but a small minority are intolerant to oats. I do wonder about the ppm in pure oats as some people react to anything over 10 ppm;

Open Original Shared Link

I've stopped eating oats as I always get a reaction when I eat them and I tend to eat more that the recommended 1/4 cup.