Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Just Glutened Myself Alot On Purspose To Identify Reactions


shayre

Recommended Posts

GlutenFreeManna Rising Star

I agree, if you ate Fair Food (yum), you got more than gluten.

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.

So, if you're eating "normal" foods you'll never know if it's just wheat.

Cream of wheat or whole wheat unsalted crackers would be better tests if you want to challenge. Or buy a small bag of whole wheat flour and make some crackers or pasta with just flour and water. With bread you won't know for sure if it's the wheat or the yeast or the sugar (or all three).

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Cream of wheat or whole wheat unsalted crackers would be better tests if you want to challenge. Or buy a small bag of whole wheat flour and make some crackers or pasta with just flour and water. With bread you won't know for sure if it's the wheat or the yeast or the sugar (or all three).

Lol, I don't think I'd ever give up sugar (at least to the extent put in bread) so I wouldn't be "adding". I love cream of wheat, hadn't thought of that! Thanks.

I eat some gluten-free yeast breads so yeast would be null like sugar.

If I used non-iodized salt, salt would be null too.

Btw, I'd have to dump in a ton of applesauce, cinnamon and maple syrup to eat that cream of wheat. I could eat bread plain.

Link to comment
Share on other sites
Poppi Enthusiast

I'm wondering if you are going to come back here complaining of symptoms. I don't think that you were stupid to gluten yourself on purpose. Since you don't have medical testing data to support eliminating gluten, it would seem the intelligent thing to do to be sure.

I agree with Skylark that if you can keep this up for a couple of weeks, get yourself tested. Is that how long a gluten challenge should be, experts? I've heart two slices of bread a day for two weeks.

It would be good to know for sure.

I was told 2-4 servings of high gluten foods for 3-4 months. I tried and lasted until lunch on the first day. Never again.

Link to comment
Share on other sites
sreese68 Enthusiast

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.

I found a way to test just gluten. I was afraid if I ate something with wheat flour, I wouldn't know if I was reacting to the fructans in wheat or the gluten. (I have fructose malabsorption, so fructans (chain of fructose) are an issue for me.) I bought vital wheat gluten flour, which is essentially a big bag of gluten. I cooked it in olive oil, kind of like it was a roux. Then, I put it on safe food. "Interesting" taste, but it did the job.

Link to comment
Share on other sites
shayre Enthusiast

Hi all. I'm sorry that it took so long to respond with the results of the testing. I did get hit with symptoms, and then both of my kids got sick with a virus that is still hanging on...then school and sport activities...been busy and way too tired. I did actually respond sooner, but I must not have hit reply...cause it's not here.

Okay, so the 48 hour mark passed, and i still had no additional symtoms...and I was less bloated. I ate the fair food on Thurs and Sat night I started feeling some symptoms starting at about 53 hrs. I had additional hand and foot pain. Then greater leg stiffness and more pain in my legs (my legs always are the most painful). Then some brain fog and some peripheral nueropathy was starting to come on. I just felt unwell and weak all over, but it wasn't that bad. I checked my temperature, which was 100.1. I ate more safe food and actually felt a little better. I went to bed and woke up feeling better on Sun, but then as the day wore on I felt worse. Around noon, the leg pain started coming on again. There was also a little nueropathy in the arms and hands, and I just felt weak. There was some brain fog. Symptoms were still on the mild side and vague for me. Do I know that this is gluten, or is this something else that happens to be flaring up.

My hubby and I had planned a date for that Sunday, so we went to Maggiano's to have some nice italian food. I really wanted to put "the nail in the coffin", so to speak...and be sure about what I was feeling. I had fried calamari, pasta plain with olive oil, and a whole loaf of bread with the olive oil. Oh, so good:) As we were leaving, I noticed a little increase in leg stiffness. Then my muscles just got really tight and uncomfortable in my back, shoulders and neck...just all knotted up. More hand and arm nueropathy, and more muscle stiffness. It still wasn't as bad as I expected. I had another bowl of raisin bran for dinner. At bedtime, I had lots of achy leg pain and stiffness. I had to scoot my legs for a few steps when standing from sitting on the couch... just to get them working again. I still had a fever and still just felt unwell. I took 2 Aleve.

Monday I woke up with muscle and joints achy and stiff. They were all very kinked up an knotted. Still nueropathy. Still less bloating, but still severe constipation. I did have a small BM though on both days that i had gluten. Weird.

Now I've just been trying to get better since then. I still have issues, so I don't know if I'm being glutened from something, or I'm still screwed up from the gluten that i ate. See? It's still not very pronounced, because I had symptoms before I ate gluten...suspecting contamination. Then the test results didn't prove to be as clear as I had hoped. And now, I'm still having better and worse days. I should be getting better little by little. However, the night before last....I was in so much pain that I was holding back tears. I almost could not stand the pain...it was in my legs mostly. It has just been on and off. Again, I'm left wondering...is it gluten, is it oat cc from my family, is it Lupus having nothing to do with gluten, is it my kid handling playdoh in kindergarden (he washes up there though)? Frustrating!

What I took away from the experiment was that I DO actually have a reaction to gluten, and that my reaction time is 2-3 days. That helps when I'm trying to figure out what I ate that effected and when. However, I am not totally convinced. I might try it one more time when I am actually feeling good to start with...if that day ever comes. I come from a physiology background, so I believe in the "test and retest theory" to eliminate doubt. I really don't know what I'm doing, I guess! I did notice that my reaction to potatoes is pretty much the same as the gluten reaction that I just got...severe leg pain. I also have the same general symptoms come on when I've been sick, or have gotten a vaccination. That does convince me that it's autoimmine and inflammatory, just not convinced which one...or combo. Thank you all for you support and advice! Love you all:)

Link to comment
Share on other sites
padma Newbie

Hi. Just reading your gluten challenge made me queasy. You must remember that you have done what is the standard for testing... eating plenty of gluten food daily for at least 2 months. Since you are tolerating the test, maybe you should stay on it and then be officially tested in 3 months. It sounds like you are the type of person that needs that kind of solid evidence.

As a holistic practitioner, I can tell you that diseases are not separate occurrences in the body. They are all connected. Before I was diagnosed at 50 I had chronic fatigue, fibro, IBS and many other problems. Now I am relatively healthy. It has taken many years to become 100% gluten free. I also had allergy testing and I stay away from those allergens, like dairy. I also eat all organic at least 95% of the time so I don't have to deal with pesticide, herbicide and GMO issues. With a great supplement protocol, I am finally quite well.

I am sorry you are tolerant of some gluten. I think that must be very confusing. It would be to me.

Years ago I did the Elimination Diet to test my sensitivities. In hindsight, it didn't work because I never totally eliminated gluten. Eventually I tried a German juice fast for a week. It includes a little rice bread and an egg per day. At the end of the week, I was pain free so started to add one food at a time. My first piece of wheat toast sent me into sever pain and made it obvious I was sensitive to it. I stayed on the fast for another week and did it again and the same thing happened. I also added oats and had the same reaction. I went for testing afterward and found out I had Celiac. Then found out my dad had it and one of my aunts.

Many of us can't tolerate adding lots of gluten, so in a way you are lucky so you can move toward testing. You will be so relieved to know for sure. It can save your life and improve your health so much.

All the best.

Link to comment
Share on other sites
  • 2 months later...
elfie Newbie

Hi, just found this thread and wanted to comment even though it is quite delayed.

I've been tested for food allergies/intolerances and easily avoid all of them except for the gluten. Now it's only accidental from cross contamination, but in the beginning none of the doctors told me of the damage I could be doing to myself and I didn't have any clear reactions or symptoms that I could pinpoint.

I've been steadily improving for quite a while on a careful diet without processed foods. I do have problems sometimes with getting enough of the right fiber in my diet and end up with the bloat/constipation issues that sound similar to the OPs. Now that I've been gluten free for a considerable time I have clear GI reactions to low level gluten contamination. I may not have GI reactions each time, I'm still working to figure that out since sometimes it appears that I have the fatigue/joint pain/irritability without GI symptoms so I'm not sure if those are symptoms of different gluten exposures. It seems like when I get only GI symptoms it's from fragmented gluten proteins.

Anyhow, that gives some background for the relevant part I'll share now. I too have done the same kind of glutening on myself to see what my symptoms would be and repeated it several times. When I ingested direct wheat---yes, I too had an elephant ear at one point and followed it up with a sandwich with two slices of whole wheat bread, as an example, I did not get the severe GI distress that I get when I am only lightly glutened. The following day I actually had a somewhat normal bowel movement. (I had the bloat/constipation issue immediately prior.) I also didn't show any signs of reactions for several days. I don't remember the actual number of days it took but my energy level slowly dropped and my joint pain increased. I did this kind of "testing" on myself a couple of times and had the same experience each time.

Yet, on my anniversary I chanced going to a restaurant with a allergy notebook that I had successfully eaten at before and picked foods that were listed as gluten free once again---I hadn't tried all of those foods previously, only some. Three hours later I was in my bathroom with severe GI distress and having hot and cold flashes and abdominal cramping and just plain miserable and wishing someone would put me out of my misery.

So, since I know of my allergies/intolerances and can eat the other foods I'm intolerant of (none of which were part of the food I ordered) without this kind of symptom and only get these symptoms from gluten now that I've been gluten free, either I reacted to some fragmented gluten that didn't show up for the allergy notebook or some amount of cross contamination from food handling. So my experience is that for some reason it is possible for a body to react to a small amount of gluten forcefully and for that same body to not react as fast and forcefully to a much larger dose. Perhaps because the "attacking forces" had more to deal with in the larger dose so didn't turn on my body as quickly.

It may not be the case for the OP, but gluten was the culprit for me. Just wanted you to know you aren't alone in the experience.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Hi, just found this thread and wanted to comment even though it is quite delayed.

I've been tested for food allergies/intolerances and easily avoid all of them except for the gluten. Now it's only accidental from cross contamination, but in the beginning none of the doctors told me of the damage I could be doing to myself and I didn't have any clear reactions or symptoms that I could pinpoint.

I've been steadily improving for quite a while on a careful diet without processed foods. I do have problems sometimes with getting enough of the right fiber in my diet and end up with the bloat/constipation issues that sound similar to the OPs. Now that I've been gluten free for a considerable time I have clear GI reactions to low level gluten contamination. I may not have GI reactions each time, I'm still working to figure that out since sometimes it appears that I have the fatigue/joint pain/irritability without GI symptoms so I'm not sure if those are symptoms of different gluten exposures. It seems like when I get only GI symptoms it's from fragmented gluten proteins.

Anyhow, that gives some background for the relevant part I'll share now. I too have done the same kind of glutening on myself to see what my symptoms would be and repeated it several times. When I ingested direct wheat---yes, I too had an elephant ear at one point and followed it up with a sandwich with two slices of whole wheat bread, as an example, I did not get the severe GI distress that I get when I am only lightly glutened. The following day I actually had a somewhat normal bowel movement. (I had the bloat/constipation issue immediately prior.) I also didn't show any signs of reactions for several days. I don't remember the actual number of days it took but my energy level slowly dropped and my joint pain increased. I did this kind of "testing" on myself a couple of times and had the same experience each time.

Yet, on my anniversary I chanced going to a restaurant with a allergy notebook that I had successfully eaten at before and picked foods that were listed as gluten free once again---I hadn't tried all of those foods previously, only some. Three hours later I was in my bathroom with severe GI distress and having hot and cold flashes and abdominal cramping and just plain miserable and wishing someone would put me out of my misery.

So, since I know of my allergies/intolerances and can eat the other foods I'm intolerant of (none of which were part of the food I ordered) without this kind of symptom and only get these symptoms from gluten now that I've been gluten free, either I reacted to some fragmented gluten that didn't show up for the allergy notebook or some amount of cross contamination from food handling. So my experience is that for some reason it is possible for a body to react to a small amount of gluten forcefully and for that same body to not react as fast and forcefully to a much larger dose. Perhaps because the "attacking forces" had more to deal with in the larger dose so didn't turn on my body as quickly.

It may not be the case for the OP, but gluten was the culprit for me. Just wanted you to know you aren't alone in the experience.

Your reactions sound like mine - one time something big, next time nothing - and trying to figure it out is awful.

I have hand shakes, pain and neuro plus DH....but rarely a GI reaction. Makes tracking the cause very difficult.

Link to comment
Share on other sites
RacerX35 Rookie

Well my wife and I had discussed this to an extent one time. She had told me of a lady she knew and that had a daughter that was celiac. The lady found that she could introduce some gluten products in a minimal amount and that her daughter was fine. My wife thought i should do that as well. I was very much against this and did not want to do it. I finally tried it one night :unsure: and had a sandwich and something else. Nothing happened, but I figured,,,, why temp fate. A couple of weeks later, I was on a business trip. I was not driving or anything and said, maybe I'll try it again. I bought a chocolate bar and a chocolate croissant. I ate the chocolate bar that night since I was at my hotel for the evening and all went well (It tasted so good too!). When I got up the next morning, I was rushing to get over to the conference center and took a quick little bite of the croissant and threw the rest away. Well, about 30-45 minutes later just as I was sitting down for the first session of the conference, I felt my head getting all fuzzy and stuff (I am epileptic as well if you don't know me). I immediately got up and went out into the hall way where I proceeded to have a small :blink: seizure. These seizure are nowhere near what I used to get, I am fully aware and return to normal within a minute. But long story short. It doesn't matter if you want to try it,,,,, just don't do it. I guess I risk to much for myself and if I'm driving to work or something. I will never test it again and I told my wife the same after I got mad at her and myself. Overall I think that it was the small amount I took in with the croissant, I have eaten from those chubs of salami and a knife to cut through the chub for multiple slices. It looks like the chub is covered with some sort of flour and I figure that the flour gets pushed into the meat as I cut it and I have the same reaction. The already cut meat is fine. All I can say is that I will never try it again.

Good luck to you,

Ray

Link to comment
Share on other sites
lovesaceliac Newbie

So what happened? Please update. I've considered the same kind of "test" myself - can't ever schedule it in to our hectic life though.

Link to comment
Share on other sites
elfie Newbie

Lovesaceliac, the OP ended up having a later reaction. It's on page 2 of this thread. For me, since I was just told I had gluten intolerance as a teenager and not what it meant I went back to eating wheat after a while because my symptoms didn't improve (Nobody said do without for at least 90 days or anything and they didn't bother to check me for celiac) so I spent my life in a poor state of health that got worse after 40+/- years. Got diagnosed with fibromyalgia and peripheral neuropathy and "slight" RA in my 40s and put out to pasture. Because of allergy/intolerance testing that was done in my late 30s where I again tested gluten intolerant I decided to go gluten free to see if it would help me because of my research on fibromyalgia. I just couldn't live with the idea that I was going to stay in worse condition than the folks in the old folks home at this age. I have a teenager that needs me to be functional enough to be a mom.

Now that I'm older and have read enough of the medical papers to understand things better I would advise anyone who has been diagnosed as gluten intolerant or celiac to "not try this at home." The scientists still don't have a clear enough handle on it all to say why we might react differently with different exposures. I wouldn't wish my health on anyone, though, as it gets better that may change. :)

I "know" better, but had to prove it to myself, just like others may feel the need. It's really not worth it because if you don't see a clear reaction you may end up where I am. I figured they've decided I'm broken (permanently disabled) and can't be fixed so I may as well guinea pig myself because my teenager shows clear signs of having the same issues and I don't want the same kind of life for her.

Like I said in my previous post, the reactions to major doses of gluten may take longer to show because there's more "invaders" for the body to attack before it starts attacking itself---and the reactions may or may not be clearly noticeable. My reactions as a teenager were written off as teenage angst, laziness, and mental issues. Other than I'm still trying to get my energy up and my pain level further down now, without gluten I don't have any of the mood issues. I accidentally get glutened and I get the mood/irritability issues back.

Basically, I and others who suffered for years without knowing why are examples of what can happen to someone diagnosed with gluten intolerance and/or celiac who continues to eat it. Some people start to feel better immediately when they go off gluten and for others it takes a while longer. Reactions to it can change over time---I didn't have clear GI symptoms for all those years otherwise one of the many docs may have bothered to check me for celiac instead of considering me a head case.

So, if you can, let the examples and self-tests of others serve as your indicators rather than putting yourself through it. It just ain't worth it. Even I know that now. LOL

Good luck to you all! Better health through diet is an option with this stuff!!!!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...