How To Do Objective Gluten Testing Home?

[threedee]

I have a gastroscopy in a week, so I have plenty of time to experiment. Since I think my diet is relatively low gluten I figured now would be a good opportunity to see if I manage to get some measurable reactions from gluten. I bought a packet of soft pure wheat bread (no milk or other flour). This is something I would not normally eat, usually I eat "skandinavian style" whole grain rye bread that has about 30-40% whole grain wheat (I am assuming there is less gluten?). I also eat pasta etc. only very rarely, but there definitely is some gluten in most of the meals I eat.

I ate half of the packet during the evening and "imagined" feeling irritated etc. I also measured higher than normal heart rate and lower heart rate variability... Well, this really is NOT the way to do objective testing

Couple of reasons:

- I knew what I was eating

- I was expecting a reaction

- I was "hoping" to get certain reaction that would support my self diagnosis

So, has anyone managed to do real blind / double blind testing with gluten in home environment? What kind of test arrangement? I think the key here is BLIND testing. I must not know when I am getting gluten.

Maybe baking two kinds of bread with similar taste and texture, flavoured porridge or drinks?

(I have HR monitor with heart rate variability measurement, thermometer and blood pressure monitor available, if that makes any difference)

threedee, "Science is my middle name"

BTW: Is there anything similar used in health care?

[RiceGuy]

The first thing that comes to mind is that you may not notice the difference from eating gluten and not, until your body has had time to recover to some degree. After that, like most of us you'll probably know by how you feel that you've made the right choice. There are apparently some who don't have outward symptoms, but since you're saying you've self-diagnosed, I'm guessing there are symptoms.

Rye has gluten, as does barley, and given how the body reacts to infinitesimal amounts, I'm not so sure it would go unnoticed.

HTH

[Ridgewalker]

I agree with RiceGuy. If you're eating some gluten at most of your meals, it's going to be harder to notice an increase in symptoms from eating a larger amount of gluten. If you give yourself a few weeks of being gluten-free, and then challenge it, it should be much easier. As you noted, you do want to wait until after your scope to go gluten-free.

As for the blind part of the test... I doubt you're going to be able to make a bread that you can't tell the difference, when you've got them side by side!

I've had what could be considered an "unintentional blind test" by eating at a restaurant and getting glutened by cross contamination or a hidden ingredient. If you've been gluten-free and symptom free for a while, and suddenly get sick after eating something risky, that could be what you're looking for.

Other risky foods would be Lay's products, or anything prepared by someone other than yourself.

[threedee]

Thanks for feedback RiceGuy and Ridgewalker! It's possible that I won't get any meaningful results, but we will see

As for the blind part of the test... I doubt you're going to be able to make a bread that you can't tell the difference, when you've got them side by side!

The two sets don't have to be identical, just hide the obvious properties of gluten...

My wife could make (hidden from me) two set of biscuits etc. and use gluten free flour on both + wheat with with the other set. Adding some baking bowder, buckwheat, millet, sugar and raisins for disguise, might do the trick... (I never tried this myself, but my wife has managed to make very good cakes etc. without any hint of common grains. She is nursing our allergic baby and we can't currently use any of the "normal" grains.)

Making some sort of fruit shakes with and without gluten might also work.

I've had what could be considered an "unintentional blind test" by eating at a restaurant and getting glutened by cross contamination or a hidden ingredient. If you've been gluten-free and symptom free for a while, and suddenly get sick after eating something risky, that could be what you're looking for.

Yesterday I managed to get a "reaction", but was it because of gluten or because I was running a test? I am afraid I would be looking at the same reaction whenever I eat food prepared by others. If I wasn't running a test I probably wouldn't think about the situation, so my reactions would likely to be real (awareness of the situation happens after symptoms).

I am afraid you are right about not noticing any difference now... I was first kind of hoping there was "linear" response to gluten (more gluten, more symptoms), but maybe it's not like that.

What I have in mind now is something like this:

- two sets of something I can eat or drink, A and B

- I will not know which set contains gluten (more = better )

- some days I sample set A and try to guess if it has gluten (by checking my HR, HRV, feelings, Gas Production Index (reg.trademark), BP, ... )

- other days it will be set B

- if I get significantly many guesses correct, that is objective and scientific measure of my ability to tell the difference of A and B based on my reaction

I think the main question now is: Where to hide gluten easily? Release your creativity!

threedee

[Cam's Mom]

Hi!

I am certainly no expert and not a scientist, although becoming increasingly interested in food science !

To answer one question - for a blind test using a food, I would highly recommend pancakes. There are some very excellent gluten-free pancakes (namely Pamela's). I would reccomend also using a wheat mix that you've never had before and preferably a gluten-free one you've never had before as well - so you don't recognize them by taste. Then slather them up with butter/margarine and syrup and you'll never know what you've got.

Okay, now with that said - I think you are missing some key medical facts about Celiac Disease. And, again, I am not sure I can accurately describe this so someone else may want to chime in, but . . . Given that people with Celiac Disease have an auto-immune response to gluten (wheat, rye, barley and some oats) - then it is indeed not a linear response. If you have been consuming some gluten at some times, then your body is in the midst of this auto-immune attack. It takes some time for those anti-bodies to resolve and leave your system. So, for example, if you eat your gluten pancake on monday and your body starts pumping out anti-bodies, they will still be present in your body on Tuesday. I think the only way you could attempt a test like this would be to completely rid your diet of gluten (for several weeks at least) then introduce one pancake or the other no more than within 2 weeks of each other.

Also, I am not sure that you are using accurate testing measurements. I am not clear that an auto-immune response would result in an elevated heart rate or BP. It certainly should result in elevated tTg levels however. Even gastro intestinal symptoms would be extremely difficult to measure as some people have severe symptoms and others, like my daughter, have almost none (although very high tTg levels and severely blunted villi).

Good luck with the testing!

Barb

[threedee]

Barb, Thanks for very thorough reply! I am aware that I might not get any measurable reaction now, but if I manage to develop a working test setup, I can use it again later. Like you pointed, the reaction may anyway be purely autoimmune, so I might later make an arrangement with some doc, so I go to lab at certain days and then we look at the results.

I really want to make the time fly... In a week I get to start gluten-free diet at the least and I may even hit the jackpot after 12 years of misery.

Pancakes sound a good idea, fast to make and easy to disguise with jam, honey or um.. almost anything

threedee

[sneezydiva]

This is going to be difficult to set up at home. The ones they do in the doctor's office are actually double blind, meaning even the doctor doesn't know which pill contains the allergen and which doesn't, to prevent biases on his part also.

I believe you have to avoid the food for at least a month before you can challenge it.

I think any wheat based food like bread or pancakes would be difficult to do, I think you could taste the difference. I would make some kind of gravy or sauce, and use wheat flour to thicken one, and a gluten-free flour to thicken the other. And have soemone else mix them up and label them A or B, so you don't know which is which.

[Ridgewalker]

In our experience, the single most difficult item to detect as gluten-free is a good chocolate cupcake. Namaste is an excellent brand.

I agree that pancakes are also very, very difficult to tell apart.

[MrMark]

I have a gastroscopy in a week, so I have plenty of time to experiment. Since I think my diet is relatively low gluten I figured now would be a good opportunity to see if I manage to get some measurable reactions from gluten. I bought a packet of soft pure wheat bread (no milk or other flour). This is something I would not normally eat, usually I eat "skandinavian style" whole grain rye bread that has about 30-40% whole grain wheat (I am assuming there is less gluten?). I also eat pasta etc. only very rarely, but there definitely is some gluten in most of the meals I eat.

I ate half of the packet during the evening and "imagined" feeling irritated etc. I also measured higher than normal heart rate and lower heart rate variability... Well, this really is NOT the way to do objective testing

Couple of reasons:

- I knew what I was eating

- I was expecting a reaction

- I was "hoping" to get certain reaction that would support my self diagnosis

So, has anyone managed to do real blind / double blind testing with gluten in home environment? What kind of test arrangement? I think the key here is BLIND testing. I must not know when I am getting gluten.

Maybe baking two kinds of bread with similar taste and texture, flavoured porridge or drinks?

(I have HR monitor with heart rate variability measurement, thermometer and blood pressure monitor available, if that makes any difference)

threedee, "Science is my middle name"

BTW: Is there anything similar used in health care?

I was given a blind (self stupidity) test last night at a restaurant, is goes as follows:

I didn't eat the salad because it had croutons(good). I didn't eat bread (good, uh duh). I ate the baked potatoe w/ salt and pepper (good). I ate a teriyaki marinated steak.

I truly convinced myself that I had eaten NO gluten, and my wife concurred. Anyway, when I was eating the steak my lips developed a tingly/slight burning sensation, peculiar. Later that night I had insomnia, BAD stomach cramps, night sweat, restlessness, burning skin, very thirsty, etc,,,. This morning: achy hip joints, thigh and calf cramps, fatigue, very sleeeeepy, brain fog big time, very itchy everywhere, irritability, etc,,,.. At this point I was doubting last night was truly gluten free.

I checked three different bottles of teriyaki (the culprit) at a store and the second ingredient after water was WHEAT for every bottle . Now I know. Pretty dumb, but I won't eat teriyaki any time soon. For me, there's no wondering when I've been glutened - it's happened accidentally 3 times.

Mark

[mftnchn]

What I have in mind now is something like this:

- two sets of something I can eat or drink, A and B

- I will not know which set contains gluten (more = better )

- some days I sample set A and try to guess if it has gluten (by checking my HR, HRV, feelings, Gas Production Index (reg.trademark), BP, ... )

- other days it will be set B

- if I get significantly many guesses correct, that is objective and scientific measure of my ability to tell the difference of A and B based on my reaction

I think the main question now is: Where to hide gluten easily? Release your creativity!

threedee

I agree with other posters that the response may not be clear. If you allergic to wheat, this would likely work. With celiac the response is different.

My reactions to gluten seem to take several days, but allergic reactions to food happen right away.

[woolwhippet]

Well, the test I gave myself was hardly scientific but it did create a reaction that was measurable. I did an overload test that I read somewhere and do not reccomend. I ate 3 cinnamon buns (made without dairy)n on a wed afternoon and seemed fine until thursday at 1pm when violent 'd' struck. I had done the same test 6 months ago with toast and had the same result. I am a really slow learner. I really didn't beleive it was the gluten making me sick. But it took 12 days with no gluten at all for the d to stop.

[threedee]

My misery has lasted for so long that I am ready to do some serious testing if there is hope for the better. I am also willing to suffer some more if that gets me positive measurable diagnosis (elevated tTGA levels would be "good"). Positive diagnosis by a doctor would be my ultimate pay back to all the other doctors who have told me I can't have celiac... (which may be true, I am just fantasizing at the moment)

Does anyone know how soon tTg levels will rise after eating gluten, assuming gluten free diet? I could do one or two instant celiac tests after couple of days on pasta diet (Open Original Shared Link). According to one book (some writers are developers of the test) it will give stronger or weaker indication depending on tTGA level.

Looking back in time I noticed that my "wellbeing" (cough, cough) has increased gradually over the years same time as my gluten input has gone down. I felt horrible when I quite often had pasta on weekends and didn't avoid pasta on workdays either. Then I discovered glycemic index and adjusted my diet to exclude pasta and white flour products. Lately my wife has been on very strict diet, so this has affected me also. Main course is always either reindeer or NZ lamb to avoid any traces of grain molecules (*). I do get some gluten and I have some symptoms (it's all relative...), so I assume there has to be villi damage if it's celiac (=> malabsorption) or it could be "just" sensitivity. I still can't explain my previous negative celiac disease test results, but so can't many others (and there is no reason to).

(*) Our baby feels better on this nursing diet, however it's almost complete elimination diet, so we are not 100% sure if it's grain or something else. She seemed to get less GI symptoms after switching away from pork and chicken. If she is that sensitive to grain molecules, we need a new kitchen... Could it be possible? BTW: We haven't found a milk formula that works for her, so nursing is the only option currently.

threedee

[Cam's Mom]

Hi Threedee!

I think you are looking for a really elegant answer to something that is inherently confusing and messy. If you find the clear on testable answer you are looking for you will indeed have the beginnigs (and maybe ending) od an excellent research paper and maybe even a book!

Here are some examples of how profoundly bizarre this disease and how inadequate or perhaps inconclusive current testing (blood and biopsiy) are. Take my family, please :

Daughter - no noticeable physical symptoms to gluten ingestion. Has other autoimmune issues that lead to celiac testing and whammo she's got whopper tTg numbers (>180 with <19 being norm.) and on biopsy considerable villi damage. So there is a major auto immune response. We put her on the strictest most intense gluten-free diet and after over a year (with testing every 4-6 months) those tTg levels were still quite high (>78) even though we are fairly certain that at some point we really got the diet right. Why don't the anti-bodies go down? No answer we have asked every specialist from NY to Maryland to Colorado, no one knows.

Me - terrible symptoms for 6 years - "bathroom" problems, joint pain, muscle spasms, low energy/fatigue etc. Tested twice both times negative. Finally went gluten-free with daughter and feel awesome - haven't felt this good, maybe ever!!

Son - (twin brother of daughter) very, very small. Complained of stomache pain for 3 years, devoloping behavioral and temper issues. Finally decided to try going gluten-free and is a new kid, happy, calm, no tummy problems. And, oh yeah - he tested neg. twice for Celiac and we were told he does not have the gene for it.

So, in the end the dietary response is the big key - forget the doctors, it's your body. Myown personal feeling is that when you go gluten-free you will KNOW if that is the answer. I know for absolute certain and I have no desire what so ever to test the theory - I never want to put the stuff into my mouth again - it's NOT food to me.

So, I hope you find the answer you seek. I think that your body will tell you what you need to know. Good luck to you!

barb

[threedee]

I am a naive puppy . I reach for the sky, but will definitely settle for gluten-free diet without further explanations if that works for me.

threedee

[An-Onion]

After you've been on the diet for a few months, buy a pack 20 of Benadryl capsules and carefully take them apart, removing the medicine. You can use an Exacto knife to cut the little tape seal thingys. Dispose of the (unneeded) medicine properly, of course. Fill 15 of them with powdered sugar. Fill the other 5 with flour. put them back together, into a bottle, and mix them up. Take one a day, or so, and record whether you feel ill, or any other symptoms. Make sure to strictly avoid any outside source of gluten. You should end up with 5 days that you have symptoms.

Just my little idea.

[threedee]

After you've been on the diet for a few months, buy a pack 20 of Benadryl capsules and carefully take them apart, removing the medicine. You can use an Exacto knife to cut the little tape seal thingys. Dispose of the (unneeded) medicine properly, of course. Fill 15 of them with powdered sugar. Fill the other 5 with flour. put them back together, into a bottle, and mix them up. Take one a day, or so, and record whether you feel ill, or any other symptoms. Make sure to strictly avoid any outside source of gluten. You should end up with 5 days that you have symptoms.

Just my little idea.

That is an excellent idea! I might have access to empty capsules as I know someone who works in medical drug development (and I am sure some company does retail trade also). I am not sure, but I think uncooked wheat flour might give problems to anyone, at least in "larger" quantities? Well, that's just one more detail to sort out. The basic idea of hiding gluten and placebo in a capsule should work beautifully. I think there are even capsules with different dissolving speeds.

The method I am planning is double blind experiment:

-two sets of capsules A and B, one with gluten one with placebo

-I give these sets to my wife who doesn't know which set has gluten

-she re-codes the sets to 8723 and 8925 (two random numbers)

-I eat one set for a while (depending on my "symptoms", 1-3 days?) and try to guess which set contains gluten

-I repeat the previous step couple of times

-after the experiment we decode the numbers and I tell which set has gluten in it, then we look at the results :-)

Over the weekend and last week I have been eating a lot of gluten. My highly unscientific method made me too tired and irritated to do much more than watch TV. Well, maybe I am just stressed because of biopsy in couple of days or feeling effects of placebo...

threedee

[aikiducky]

You could try to get your hands on pure gluten. Bakeries use it as far as I know. But you'll need to keep an interval of at least two weeks, because it would take at least that long for the autoimmune reaction to die down enough for clear results. Otherwise you might be getting the reactions from a previous gluten set during the gluten free set. For example, whenever I get glutened, I usually feel bad for a couple days, then I start to feel better, then a week or so later (6-8 days) I have a day of almost similar symptoms as the first day, then I slowly improve again. It would be very easy to get confused by something like that.

Pauliina

[woolwhippet]

This is very clever! If you try it please tell us how it worked.

[Cam's Mom]

I still think the whole program is inherently flawed because it presupposes that this disease acts the same way on everyone or even on one someone all of the time. My experience just does not support that.

But with that said, you can buy vital wheat gluten at any health food store and even some big name regular grocery stores. In fact, I believe Bob's Red Mill sells a packaged vital wheat gluten. You can also by glycerine (I think that's what they're called) capsules in pretty much any health food store - in the vitamin aisle.

I guess I understand the need to quantify it. When my daughter was first diagnosed I wanted to know how much it would take to make her sick, how long it would take to see the reaction, how long would the reaction last, how severe would the reaction be, would the severity be in direct proportion to the amount??? But now almost two years on I understand only one thing about this disease: Gluten = bad, so at all costs, stay away from it. That pretty much sums it up!

Good luck with the scientific approach and good luck with the biopsy!

barb

[threedee]

Thanks for all replies! After so many messages I now feel that I really want to do some testing after couple of months on gluten-free diet. It may have some negative short term health effects for me, but should be nothing serious.

My main motivations for doing this:

1. Independent of my celiac disease & gluten sensitivity status I am genuinely interested in seeing how will I react and will I gain any additional knowledge about myself

2. Doctors, who I think believe in science, have been telling me "it's all in my head" and "you are just born that way". This is going to score one point for me or them...

3. As long as there is a change it's truly "in my head", I have to realistically consider therapy, medications etc. mental health options

4. Some say people should trust their gut feeling when hunting for food sensitivities etc. issues. Some say only objective measures like blood tests should be trusted because people can easily deceive themselves (kind of inverse placebo effect). I think personal testing can be valuable tool if done properly (placebo & double blind). It's not a perfect tool, but could speed up and confirm "diagnosis" in some cases while reducing the risk of false positive (for example I am certain there has to be someone out there who avoids gluten needlessly!).

Next steps:

if biopsy is positive then testing as soon as I think autoimmune reaction in my gut has diet (some research indicates that reaction can be local to gut => neg blood tests). I don't want to postpone my healing needlessly, so I won't wait until my gut is 100% ok.

if biopsy is negative then I can wait a little longer before testing (I will quite likely have some stool & blood tests done to make sure it's not anything malabsorption related).

I'll post the biopsy results on this thread and in couple of months I do the gluten test and post the results here also.

Disclaimer:

This is very personal thing and so are the results. No one should base their medical treatment on anything like this. Different doctors will have varying opinions about utility of something like this (I suspect many would warn against).

See you all soon

threedee

[threedee]

Visual examination during operation didn't indicate celiac disease. Final results will be ready in three weeks. I have now started gluten-free diet and tomorrow I will schedule appointment with a doctor who knows functional medicine. I'll post results of my gluten tests in couple of months .

threedee

P.S. It wasn't THAT horrible, so I bravely said "that was easy!". Doctor looked at me and asked "Tomorrow again?"...