I Think I'm Going To Eat Gluten On Purpose!

[LoriG]

Hi there-

Just looking for some of your suggestions because I am thinking of eating gluten on purpose to see what happens.

I was diagnosed by enterolab and have been gluten-free 4 months and CF for 2 months. I have had years of ill health and it took me going around and around with doctors to finally figure out what it was. This was due to my symptoms: constipation (only started a year ago), chronic fatigue, insomnia, depression, and irritability. Based on these symptoms for years and years, no one including me looked at food allergies.

Anyway, I also am hypothyroid so I was focusing on that, too. So since cutting out gluten and dairy, I am no longer constipated and I fall asleep better, but I am still so tired with no energy at all. I am so irritable. I am not sure if this is due to me just needing time to heal from this or if I am somehow getting in small amounts of gluten and I don't know it. I am considering just eating some pizza so I can gauge what symptoms I would have so I would know if I'm getting cross contamination or not. I also know this isn't wise because I am trying to heal, but don't know if the fatigue and irritability are still there because I'm getting it in without knowing it. Any helpful suggestions?

[Glutenfreefamily]

Well, I would look at other intolerances too maybe first before glutening yourself. Maybe soy? I know I had loads come out after I went gluten-free. I personally did test myself with gluten after diagnosis but that was mainly my denial stage and I just knew that I wasnt gluten intolerant. Well a few days of that with major symptoms that lasted for days about killed me but I didnt question it anymore. It also took two years for some of my symptoms to go away. The damage over the years really has shown itself lately with autoimmune disorders.

There are other things that can cause tiredness, do a search on adrenal fatigue. I know a few on this board have dealt with this.

Good Luck at figuring it out.

[mamaw]

It still could be your thyroid also. I would suggest a blood work-up & additional allergy testing. I would say don't start eating gluten again. You want to lessen your ills not make them worse!

[GlutenWrangler]

Lori,

I would think that you would get all of your previous symptoms back, including constipation and insomnia, if you were still consuming small amounts of gluten. I think you should look into food allergies before you torture yourself with gluten. Good luck,

-Brian

[nutralady2001]

It still could be your thyroid also. I would suggest a blood work-up & additional allergy testing. I would say don't start eating gluten again. You want to lessen your ills not make them worse!

That is my thought too, you need for thyroid tests, TSH, Free T3,Free T4 anti-TPO and TgAb antibodies (both of them) also ferritin, iron ,B12,Vitamin D

[num1habsfan]

I have hypothyroidism also. Even though mine was determined through bloodtests and am on medication I still have the fatigue symptoms because my dose is not high enough (and for some reason the doctor who diagnosed me won't raise it any!). Maybe that's the problem too.

If I was you, I WOULD NOT do the cheating thing. Take it from someone who's been there. I've done it and learned by lesson. It's because of my sometimes stubborness and gluten-filled eating that I'm now so sensative--I can't breathe it, touch it, can't even go near a couple of crumbs touching anything I eat or USE to eat. That's all it takes now to get me glutened and sick for a week at least.

~ Lisa ~

[LoriG]

Thank you everyone for replying.

I wanted to clear up that I wasn't planning on eating gluten on a continuous basis, only trying it for one meal like pizza and monitor how I feel. I want to do this so I KNOW what eating gluten would do so I would not question if I am getting in gluten and not knowing it. This is because I don't have the usual symptoms.

I have been tested for adrenals, all of the mentioned bloodwork - all ok. Iron was low for awhile. I'm low in some minerals/vitamins. My free t3 for thyroid is still not as high as I'd like so I am counting on the fatigue/irritability getting better once that is higher. Or it is just celiac taking a long time to heal and the fatigue to get better.

I've considered getting tested for other allergies but there seems to be no good test for that. I didn't want a lot of false positives either.

Again, thank you for your suggestions.

[Tim-n-VA]

I've been debating a similar test - a one time intentional consumption of gluten to clearly identify reaction. I would suggest that if this is what you are doing that you try to eliminate as many variables as possible. That means for a period of a few hours before and after try to have nothing else that could cause a reaction (either thru intolerance or mild food poisoning) - nothing but water would be best. I'd also suggest eating only plain wheat bread. If you eat pizza you are introducing the possibliity of a reaction to cheese, sauce and/or any other toppings.

[LoriG]

I've been debating a similar test - a one time intentional consumption of gluten to clearly identify reaction. I would suggest that if this is what you are doing that you try to eliminate as many variables as possible. That means for a period of a few hours before and after try to have nothing else that could cause a reaction (either thru intolerance or mild food poisoning) - nothing but water would be best. I'd also suggest eating only plain wheat bread. If you eat pizza you are introducing the possibliity of a reaction to cheese, sauce and/or any other toppings.

Thanks Tim-n-VA

I think that is a good idea because I have also eliminated dairy so what would I be reacting to, then? I am hoping for an immediate obvious reaction because that would help me then in this healing process to know when I get it by cc or otherwise. Good luck to you!

[CarlaB]

Keep in mind that Enterolab cannot diagnose celiac disease, they can only tell you whether you are reacting to gluten. So, you do not at this point know if you have celiac disease.

If you've been gluten-free for some time and are still having symptoms, I would guess you haven't really gotten to the bottom of your health issues.

I ended up having a whole slew of things wrong with me .... Lyme Disease, bacterial dysbiosis, hypothyroid, tapeworm, lead toxicity, babesia, and bartonella.

My Enterolab test showed IgA of 60 for gluten, 30 for casein. After treating these other issues, I have absolutely no food intolerances whatsoever and I have been back on gluten for a couple months now. Before I treated these other issues, I reacted just like a celiac to a small crumb of gluten.

I'm not saying all non-celiac gluten intolerants will have this same effect, but the possibility is there for some. Since your health issues did not clear with avoiding gluten, I would think there is something else going on.

[CMCM]

Sometimes eating something doesn't produce a discernible reaction. I'm that way....I'm not immediately reactive to gluten. I was very sick at the time of diagnosis, then was carefully gluten and dairy free for 5 or 6 months. Most of my many other intolerances cleared up during that period, and at that point I found I could handle occasional dairy again, too.

What happens with me is I get reactions after several days of eating gluten items. It's like it builds up and then pushes over the edge into a reaction. I've done this a number of times, but when I do finally get the reaction it is bad.

This is why celiac disease/gluten intolerance is such a difficult thing to pinpoint. The reactions aren't always immediate, and as I've also observed, they aren't always identical. My reactions can be a migraine, it can be a horrible case of stomach pain/heartburn, it can be digestive in nature....seems like it's diffferent every darn time.

For some of us, you have to reach a point of belief about it: You have to realize you have the genes, you can have the reactions, and most important, you have to realize and accept that underneath it all damage to your body is occurring even if you don't see it directly. We all have a tendency to think what we don't see clearly doesn't exist. Not true with celiac disease. It's very insidious, very damaging. You don't want to find out when it's too late to reverse any damage.

[kbtoyssni]

It depends on the person, but some people get variable symptoms. I feel slightly differently every time I get glutened so it's hard to track my reactions. Some people also can't tell the difference between a gluten reaction and a reaction to another food they're intolerant to, so if you accidentally ingested the other food, you might think it's gluten. Something to think about.

[Striving]

Hi there-

Just looking for some of your suggestions because I am thinking of eating gluten on purpose to see what happens.

I was diagnosed by enterolab and have been gluten-free 4 months and CF for 2 months. I have had years of ill health and it took me going around and around with doctors to finally figure out what it was. This was due to my symptoms: constipation (only started a year ago), chronic fatigue, insomnia, depression, and irritability. Based on these symptoms for years and years, no one including me looked at food allergies.

Anyway, I also am hypothyroid so I was focusing on that, too. So since cutting out gluten and dairy, I am no longer constipated and I fall asleep better, but I am still so tired with no energy at all. I am so irritable. I am not sure if this is due to me just needing time to heal from this or if I am somehow getting in small amounts of gluten and I don't know it. I am considering just eating some pizza so I can gauge what symptoms I would have so I would know if I'm getting cross contamination or not. I also know this isn't wise because I am trying to heal, but don't know if the fatigue and irritability are still there because I'm getting it in without knowing it. Any helpful suggestions?

Your symptoms are also consistent with hyperparathyroidism which is pretty common with celiac.

[Lilchef]

Hi there-

Just looking for some of your suggestions because I am thinking of eating gluten on purpose to see what happens.

I was diagnosed by enterolab and have been gluten-free 4 months and CF for 2 months. I have had years of ill health and it took me going around and around with doctors to finally figure out what it was. This was due to my symptoms: constipation (only started a year ago), chronic fatigue, insomnia, depression, and irritability. Based on these symptoms for years and years, no one including me looked at food allergies.

Anyway, I also am hypothyroid so I was focusing on that, too. So since cutting out gluten and dairy, I am no longer constipated and I fall asleep better, but I am still so tired with no energy at all. I am so irritable. I am not sure if this is due to me just needing time to heal from this or if I am somehow getting in small amounts of gluten and I don't know it. I am considering just eating some pizza so I can gauge what symptoms I would have so I would know if I'm getting cross contamination or not. I also know this isn't wise because I am trying to heal, but don't know if the fatigue and irritability are still there because I'm getting it in without knowing it. Any helpful suggestions?

Hi there,

I really think that you should not eat the pizza or any other food with gluten. I was just diagnosed with celiac and my Doctor told me the other day it will probably take six months for me to feel re-energized and not tired. so just wait a little longer. oh and while your waiting make sure of things like using your own knife on your bread, have your own peanut butter jar and butter, use the toaster first and wipe it off before you use it. just little things like that!

hope you feel better soon

[LoriG]

Hi there,

I really think that you should not eat the pizza or any other food with gluten. I was just diagnosed with celiac and my Doctor told me the other day it will probably take six months for me to feel re-energized and not tired. so just wait a little longer. oh and while your waiting make sure of things like using your own knife on your bread, have your own peanut butter jar and butter, use the toaster first and wipe it off before you use it. just little things like that!

hope you feel better soon

Thanks you all for your responses. I don't think I am going to chance it afterall. I am so desperate to start feeling well that I don't want to set myself back even more. I was glad to read that some of you are experiencing different glutened symptoms so it may be hard to tell. It was also encouraging to read that it does take time, which I've read before. Maybe my breakthrough is right around the corner?!

[Striving]

Hi there,

I really think that you should not eat the pizza or any other food with gluten. I was just diagnosed with celiac and my Doctor told me the other day it will probably take six months for me to feel re-energized and not tired. so just wait a little longer. oh and while your waiting make sure of things like using your own knife on your bread, have your own peanut butter jar and butter, use the toaster first and wipe it off before you use it. just little things like that!

hope you feel better soon

Bolding mine.

You should not be using a toaster that gluten bread is toasted in period because you can't get rid of all the crumbs and your food gets cross contaminated. A toaster is one of the things that need to be replaced along with wooden spoons.

[BSinCO]

Hi,

This is my first time in a forum, but I am glad I joined. There is so much great information here. I ready your response and became very interested. I have been gluten, dairy, soy, corn, and tomato free for a year and a half now. I am still having problems. I also have hypothyroidism, but the medication does not seem to be helping. I am curious about all of the other medical problems that you found out about. How did you go about getting tested for all of these things? I know there is something else going on with me, but I am not sure how find out what it is. I don't think I have the best primary, but have never been happy with a PCP, so I don't know what to do about that either. The gastroenterologist I went to seemed clueless about nutrition, so that was also a bust.

Keep in mind that Enterolab cannot diagnose celiac disease, they can only tell you whether you are reacting to gluten. So, you do not at this point know if you have celiac disease.

If you've been gluten-free for some time and are still having symptoms, I would guess you haven't really gotten to the bottom of your health issues.

I ended up having a whole slew of things wrong with me .... Lyme Disease, bacterial dysbiosis, hypothyroid, tapeworm, lead toxicity, babesia, and bartonella.

My Enterolab test showed IgA of 60 for gluten, 30 for casein. After treating these other issues, I have absolutely no food intolerances whatsoever and I have been back on gluten for a couple months now. Before I treated these other issues, I reacted just like a celiac to a small crumb of gluten.

I'm not saying all non-celiac gluten intolerants will have this same effect, but the possibility is there for some. Since your health issues did not clear with avoiding gluten, I would think there is something else going on.

[Leslie-FL]

I remember reading somewhere that it can take up to a year, in some cases, for healing after beginning a gluten-free diet. I started mine last April, and although I felt a big difference within days, I still had some symptoms that were much slower in going away.

It's difficult when you are dealing with more than one problem that can cause similar symptoms, but my advice would be not to change the things that you already know are helping in some way.

It might be pretty common, in the beginning, to not fully believe you're gluten intolerant. Around the time I was gluten-free for a couple months, I was starting to think maybe that wasn't really my problem after all, and I accidently ate some gluten (I figured out how I did it afterward, when it was too late). The reaction was so intense, and has been every other time I've accidently been glutened, that I no longer have any doubt.

[DebJ14]

Well, I would look at other intolerances too maybe first before glutening yourself. Maybe soy? I know I had loads come out after I went gluten-free. I personally did test myself with gluten after diagnosis but that was mainly my denial stage and I just knew that I wasnt gluten intolerant. Well a few days of that with major symptoms that lasted for days about killed me but I didnt question it anymore. It also took two years for some of my symptoms to go away. The damage over the years really has shown itself lately with autoimmune disorders.

There are other things that can cause tiredness, do a search on adrenal fatigue. I know a few on this board have dealt with this.

Good Luck at figuring it out.

I completely agree with idea of checking for other food intolerances. It is a toss up which is worse, my reaction to gluten, corn or dairy. Also I would recommend testing for nutritional deficiencies with something like the Spectracell test. If your gut is damaged then you are probably not absorbing nutrients which will make you fatigued. Magnesium, iron and B-12 deficiencies are very common and that can make you fatigued. Also, you may be hypothyroid if you have a selenium deficiency. It is necessary for the conversion of the thyroid hormones.

But, for heaven's sake don't eat gluten. You will put yourself back at square one. If you stick to fresh, organic fruits and vegetables, organic lean meats and chicken and wild fish you shouldn't encounter any gluten. Processed food is not good for anybody.

Debbie

[b91hd7fjk]

Thank you everyone for replying.

I wanted to clear up that I wasn't planning on eating gluten on a continuous basis, only trying it for one meal like pizza and monitor how I feel. I want to do this so I KNOW what eating gluten would do so I would not question if I am getting in gluten and not knowing it. This is because I don't have the usual symptoms.

I have been tested for adrenals, all of the mentioned bloodwork - all ok. Iron was low for awhile. I'm low in some minerals/vitamins. My free t3 for thyroid is still not as high as I'd like so I am counting on the fatigue/irritability getting better once that is higher. Or it is just celiac taking a long time to heal and the fatigue to get better.

I've considered getting tested for other allergies but there seems to be no good test for that. I didn't want a lot of false positives either.

Again, thank you for your suggestions.

I have totally thought about doing this too!!! My ideas and questions are the same. My symptoms are still lingering and it has been almost 3 years!!! I feel like I am being poisioned by things I was told I am allowed to eat but ironically overall I feel better than I did prior to diagnosis! Anyways, your totally on my wavelength....I too need to seek some medical attention to help weed out the good and bad for me but in the mean time I have certainly considered the same thing.

-Staci