The Gluten Challenge

I’ll be updating this page as my challenge progresses. Get ready for TMI!!!
Our whole family went gluten-free just over a year ago. At the time, it seemed like a good idea just to give it a try and see how it went. What we didn’t know was that we’d eventually want to be tested for celiac disease, and those tests are only reliable when you have been eating a diet high in gluten for about 3 months.

We found out about the testing early on and decided to get our daughter tested. Her brother obviously had to be 100% gluten free, but she hadn’t shown any real changes. She was extremely small for her age, though, and that can be symptom of celiac disease. Kodiak ate whole wheat bread every day for a couple months and eventually got blood work which was negative. She also had genetic testing done, which did not show any of the typical risk factors for celiac.

Since our kids have different biological fathers, It honestly didn’t occur to me that I might need to be tested, too. I figured my son had his celiac genetics from his biological father and I was safe. Going gluten-free had been hard for me at first, and most of my positive changes took place after switching to the GAPS diet. It seemed to me that getting my blood sugar regulated and eating all the probiotic foods had more to do with my improvements than cutting out gluten, but I definitely experienced a withdrawal from gluten.

When I reviewed the kids’ genetic information, though, it was obvious that my son got one copy of his risk from his biological father, and one from me! I’ve decided I really want to know if celiac disease is a part of what’s going on for me. I also wanted to know how critical it is that I stay 100% gluten free and vigilant about cross-contamination forever. I’m curious to know if any of my symptoms seem directly correlated with exposure to gluten. When we were first gluten free I did seem to get symptoms from cross-contamination in alternate grains and beans and I’m curious if those were gluten reactions or reactions to those foods themselves.

So… I waited until I had my digestion back on track. It had been out of whack because of soy-fed eggs and a quick slip into some Halloween-related processed crap. Digestive enzymes and getting back to basics got me in good shape. I went to my doctor and she ordered a full celiac panel for me. This way, if I can’t make it the whole three months, I can go in for the test without waiting for a new appointment. When I am ready, I’ll just go into the lab.
The celiac panel includes:

  • tTG IgA
  • EMA IgA
  • AGA IgA
  • AGA IgG
  • total IgA (important because if total IgA is low, the other IgA tests will not be accurate)
  • DGP (this one is now replacing AGA, it is more specific to celiac disease)

My goal is to eat about 20 grams of gluten a day for at least 2 months. This is the amount in 4 typical slices of bread. But since I wanted my symptoms to be obviously related to gluten and not other ingredients I’m not used to having, we decided to go with Bob’s Red Mill Whole Wheat Farina as my source of gluten.

After Thanksgiving, I started the gluten challenge. I’m eating the farina every day. The first day I actually didn’t notice any symptoms, but slowly they are starting to add up. It started out with foul gas, and now I’m noticing brain fog and a bit of a headache when I eat it as well. I’ve had to run to the bathroom a couple times, too. I’ve been sleeping extremely heavily and this morning woke up with my old stiff hands. I can’t be sure this is all the gluten talking, but it does seem related. None of this is as severe as what I used to experience… but it has been a year of healing since then. It will be interesting to see what happens. So far it hasn’t been bad and I’m thinking I’ll be able to make it through the challenge for some reliable testing.

Update December 2, 2011
Since the farina is 12% gluten, I have to eat 167 grams of it a day to get my 20 grams. I have not been able to keep up with this amount. It makes me so full that I don’t feel like I can eat anything else. Having half first thing in the morning and half in the evening has helped with being able to eat other foods. I’m going to try finding something less filling to try. I’m going to try store bought bread with the fewest ingredients I can find.

Symptom-wise, my gas is much better than it was at first. However, I’ve been sleeping like a rock and waking up tired, with very stiff hands. My thumbs and toes are sore in the morning and night especially as well. It’s hard to say with symptoms like this what they are related to. I did have these symptoms before going gluten-free, however maybe it could be the weather, or the yard work I’ve been doing? I guess time will tell. My bad breath and terrible BO seem clearly correlated to the gluten. So do my tummy aches.

Update December 7, 2011
Well, things seem to be getting worse. Last night I ate a bunch of sourdough bread before bed and I woke up four or five times with horrid pain in my arms and hands. It’s similar to the symptoms I get from hypoglycemia, only much worse and with stiffness. I got the pins and needles feeling all the way down them, the dead arm feeling, and pain. Also, my hands couldn’t make a fist, and moving my fingers was very painful. They did a sort of popping thing when I extended them and bent them, jumping from position to position instead of flowing through them. They also couldn’t fully extend. A couple hours after waking up they felt better. I still have some weakness in my hands but it’s not too bad. Before changing our diet last year these kinds of symptoms were normal for me. The rest of my symptoms are continuing.

Thanks, gluten! I love looking pregnant again.

Update December 13, 2011
Oh, my achin’ belly! This has been happening on and off throughout the challenge, but this time I thought to take a picture. Normally my belly is flat.

It’s definitely getting harder to make myself eat the gluten. I think I’m going to get some Bob’s Red Mill Vital Wheat Gluten and start sprinkling that on all my meals.

Update December 16, 2011
Oh boy more fun body stuff. Today I had a symptom I’d pretty much forgotten about but which used to be a constant thing – morning nausea and an extremely sensitive gag reflex. When I brushed my teeth this morning it sent me into dry heaves. Yuck!

I’ve also noticed my skin is itchy. My face is breaking out and my forehead, legs, and torso itch. They even turn red and inflamed when I take a hot shower. Nice.

Update December 19, 2011
It is so hard to eat the gluten. The past couple days I’ve been really bad about it. I even had one day were I didn’t eat gluten, and I went for something like a glorious 12 hours without a stomach ache. The next day on gluten was brutal.

I’ve started to get brain fog when I eat the gluten. It sets in pretty much right away and doesn’t last all that long. The other new thing that’s happening is I’ve been crashing. I think this is a blood sugar problem. I have belly pain which makes me not want to eat until I am falling over. It’s happened to me twice in the past couple days that I got a cold sweat, lightheaded, and had to lie down and eat something. This is something that used to happen to me regularly. I used to pass out, but I’ve since learned to hit the floor on purpose first. It started when I was about 11 years old and was especially bad when I was pregnant.

Still, through all this, my symptoms are just a fraction of what many other people experience. I’m functional, overall. I really wonder whether the tests will show anything when we get to it.

Update December 23, 2011
Today I took the cat to the vet and about half-way through the visit I almost passed out. I’d been thinking this was just a blood sugar issue but I ate right before going to the vet so I don’t know now. Fortunately I realized it and was able to lay down before I hit the floor. When I had my color back the doctor asked if I had low blood pressure. I do, generally, but explained that my fainting spells have come back with my gluten challenge. She said it seemed I had my answer.

Update December 27, 2011
Ugh. I went a couple days without eating gluten. It wasn’t really on purpose because I still want to get tested… We just had so much else to eat and by the time I thought of making pasta I was so full. I stopped stinking as much and my now-constant tummy ache let up, and that made it even less appealing. Anyway, I’m back on gluten as of last night, back to the same old stuff. Now the whole family seems to be coming down with something (headache and nausea) so until that’s gone it’ll be hard to say what’s gluten and what’s the virus.

Also, I’m finally clear of the herpes outbreaks that I just realized I forgot to mention. I’ve had three since this challenge started a month ago. I’m pretty sure I only had one mild outbreak in the whole year prior.

Update December 29, 2011
I’ve always been the emotional sort, but lately I’ve been back in my adolescent brain. Everything is reading as an attack. Of course I’ve felt completely justified in my defensiveness and outbursts in the moment, but it’s starting to get ridiculous. My tip off is that people are reacting to me differently than I’m used to. So I started going back later with the thought in my head that maybe I was overreacting, and when I review what happened I can rationally see how I misinterpreted things completely. Sigh. Being a teenager was bad enough the first time.

Update December 30, 2011
Yesterday I started getting what is probably a reaction to something else – I had itchy, itchy ears. Throughout the challenge I’ve had itchiness on my legs, arms, and torso, but this was intense and all around my ears. I wonder if I’m developing some sort of allergy to apples as I’ve been eating a lot of them lately, what with the apple butter, apple crisp, applesauce, and plain old apples we have on hand. I’ll have to test that.

My facial tingling has also come back. This is a weird symptom I’ve had on and off most of my life. I’ve gotten it with migraine auras before. But when it was at it’s worst it turned out I had an abscessed tooth and had to have a root canal. My dental health had been so much better on GAPS it was amazing. I’m really hoping this is a tingly-face thing, not a tingly-your-bones-are-rotting-out-of-your-face thing. How’s that for hypochondria? It is more uniform so it’s probably a tingly-face thing. Kelsy has also noticed I’m shaky. I used to be shaky, but that had pretty much gone away. All this points to neurological symptoms returning, I think.

Oh, and good news – I think the diarrhea and horrid gas have subsided. Now I’ve just got pain instead. The pain is in the same exact spots I used to get it – kind of appendix or gall-bladderish. I really hope I don’t start getting attacks of that again (I’ve been to the ER a few times over this). So far it’s just twinges. Fun times, folks.

Update January 2, 2012
I stopped eating apples but my itchy ears and tingly face are sticking around. My legs are falling asleep a lot, too.

Another symptom I’ve been having is bad sleep. I don’t fall asleep easily, and I wake up all night long. My bad breath actually is so bad that it wakes me up. My belly pain wakes me up, too. (So does the cat… and needing to pee…) Of course when I get woken up I’m in the middle of a dream, and my dreams have been extra scary, too. Then I wake up late and have a really hard time getting started.

Well, last night I slept like the dead. I only woke up once, and fell right back asleep. It was marvelous. I kind of woke up when Kelsy got up, but I was super disoriented, thinking it was Saturday, wondering where I was supposed to be, and feeling like total crap… then I fell back asleep so hard that when Kelsy came in and opened the windows and put the cat on me I didn’t stir. She checked on me 4 times and I didn’t wake up. Maybe I’m making up for lost sleep.

I also finally took a little video of my hands when waking up. It shows the weird jerky thing they do and how I can’t make a proper fist. This is typical for me the first hour or so after waking since I’ve been back on gluten. The sound is bad, basically I’m saying I can’t move my fingers smoothly or make a tight fist. They stretched out fine this morning, sometimes they won’t do that. There is some achy pain in the joints and bones of my fingers. My toes, knees, and shin bones have been sore as well.

Update January 10, 2012
I keep eating the gluten. My body odor is really unpleasant, and has been since the start. Of all the symptoms, this is the one that upsets me the most. It’s just embarrassing to stink! My digestion has slowed down but isn’t miserable any more. I think I’m kind of adjusting to having the gluten in my diet. It makes me wonder if I’m going to get negative test results despite all this unpleasantness.

It’s funny how even after more than a month of this I am still in my gluten-free mode out in public. I reflexively politely refuse foods that people offer me and plan ahead for bringing my own food. It’s funny how normal being gluten-free has become to me.

Update January 16, 2012
I’d been feeling like I stabilized at a new normal. Then I really gorged on gluten. I went to a party, played Toblero, drinking a lot of beer in the process. I also ate about a loaf of amazing fresh-baked bread. This was on top of already having had gluten that morning. I had a fantastic time!

Wow, did my symptoms blow up the next couple days. I’m back to running to the bathroom, and I stink ten times as much in every imaginable way. My hands have achieved new levels of stiffness, and I have had a more-horrid-than-ever time prying myself from bed in the (late) morning.

Update January 19, 2012
I still haven’t recovered. I almost pooped my pants twice this morning. TMI, I know. But seriously, if you’ve read this far that’s no biggie, right? My face feels puffy, too. Like my eyelids are extra thick and itchy. Seems like I must have some mild sort of IgE thing going on.

The worst thing is how hard this has been on my family. Kelsy seriously is suffering for having to put up with my over-the-top defensiveness and sensitivity. It’s like I have PMS x 100 all the time. Add to this my thoughts are obsessive.

I get convinced that people are “trying to make me lie.” For instance, yesterday I was trying to figure out how to file W2s for employees. I called the Social Security Administration office’s number. The automated phone tree told me to enter the SSN for the person I was calling about. I was calling about filing 2 employees’ forms. So I freaked out and had to hang up. I couldn’t decide what to do so that I wouldn’t be “lying.” I called back and entered my own SSN, irrationally fearing that it was somehow a federal offense I could be prosecuted for. I worried about it for the rest of the day.

Fortunately, I am aware enough to know that these obsessive thoughts do not reflect reality. Unfortunately, my mental health is such a mess that I still think them. Thanks, gluten!

Update January 20, 2012
Did I mention my skin is really bad? My cheeks are red and dry, my forehead has been peeling this whole time. I’ve been rubbing coconut oil in all the time which helps a bit, but doesn’t compare to the benefits of a good diet. Sigh. It’s not just the winter. My skin was much better last winter when I was gluten-free, for the first time ever.

My bad breath and body odor are even worse if that is possible. Kelsy practically runs away retching when I get too close. I’ll be glad when this is over.

Update January 21, 2012
I just realized I never mentioned my ears ringing. It’s not all the time, but has been happening frequently over the past month or so.

Anyway, I had a total mental breakdown into an incommunicative, OCD, twitching, stuttering mess today. If I’m not adequately gut-damaged, I’m surely adequately brain-damaged. I was shooting for three months and didn’t quite make it for two, but I’ll be getting my bloodwork this week. After that, no more gluten.

So tonight I went and had the two foods I’ve wished for – Mississippi pizza and a cinnamon roll. These are things I wouldn’t normally eat in the best of times due to the dairy and the sugar. I was feeling so horrid anyway, I figured what’s the difference?

There’s a new blog a-comin’ about my big crash. (Here it is: I Fought the Gluten and the Gluten Won) Just a few more days and I’ll be done with this experiment.

This post is a part of Monday Mania on The Healthy Home Economist.

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28 comments to The Gluten Challenge

  • Aly

    Yow! That doesn’t sound like very livable symptoms. The brain fog, lethargy, dizziness, and headaches are my tell tale signs. I would be afraid to eat wheat right now. Let us know how it goes!

    • Joy

      Well, so far all my symptoms are very mild compared to symptoms I’ve had in the past. If that changes I will have to reevaluate my plans.

      The difference between having celiac and having a sensitivity is that with celiac you must avoid all cross-contamination, even if you don’t feel any effects. Maybe science will show that even gluten intolerant or sensitive people shouldn’t have any contact with gluten at all anyway, but I would like to know if I have this specific kind of damage and risk. I really wish I had been tested prior to going gluten free.

      I don’t suggest anyone else try reintroducing gluten if they are afraid to! I think it’s fine for people to avoid it, especially if it makes them feel bad!

  • Jennifer Reyna

    How are you handling cross-contamination with J’s celiac?

    • Joy

      I have one sealed container of farina, which we will throw away after this experiment. I have one small pot which we don’t use for anything else. I put the water in the pot, put it on the stove, put the farina in, put the lid on, and cook it. Then I eat directly out of the pot with a designated spoon. I wash them out in the sink with soap and water, with a designated sponge (the only yellow one). I keep that sponge up on the windowsill. Then I dry the pot and spoon on a designated spot on the drying rack.

      • Jennifer Reyna

        I don’t know if I have Celiac’s b/c I’m not willing to reintroduce wheat in my diet but you might be interested to know that I react to wheat in the air when it’s cooking. Bread on the table isn’t a big deal but baking bread gives me neurological problems, like short term memory loss. Luckily, it doesn’t seem to affect me digestively and the neuro problems disappear soon after I leave the area.

        • Joy

          Reacting to airborne gluten is something I’ve heard from a lot of people. No way are we baking bread at our house… Or bringing in all those crumbs. When Kodiak was doing her challenge we had one sealed, sliced bag of bread which she ate on paper towels, then we cleaned up carefully.

  • Rosalyn

    I don’t understand why you need laboratory verification of something that is so obvious to you. Do the measurements make it more real to you? Or does it give you something to show people who don’t believe that gluten makes you ill? The trial you’re doing sounds like torture, and it can’t be helping your overall health long-term.

    • Joy

      It is a tough thing to justify, but also something I just feel I need to do for myself, emotionally. I have a number of reasons for wanting the testing – some of them contradictory. I’m complex, what can I say?

      I grew up being seen as a hypochondriac. I lost the ability to trust what I feel in my own body. Even now, I feel like I am making it all up. Positive numbers would validate my experience in a way I could hold on to. I know I very well may end up with a negative test result. Then I’ll have to confront my hypochondria issues without the validation of scientific proof. At least now I have this nice record of all the miserable things that eating gluten does to me. I didn’t get that when I first went gluten-free and I’m glad to have it now. I’m looking forward to going back off gluten and feeling better again. Hopefully I’ll find a way to get *all* the way better this time.

      When I first went gluten free I actually felt much worse for a couple months. Going on GAPS fixed a lot of that. But I did not get better as quickly or as completely as the rest of the family, and I even developed a couple new symptoms. I’d like to have a clearer picture of what symptoms are due to gluten and what are due to other things. I’d like to know if it’s that I just haven’t healed from gluten, or if there are other issues at play.

      It took a while for symptoms to set in once I went back on gluten. Now that they have, I do have a lot of answers. However I’d hate to quit before being able to get valid results, having already put myself through this much. After a life-time, it’s hard to see how a few more weeks is going to make that big of a difference, given my symptoms are not extreme.

      From a medical standpoint, there are good reasons to know whether it is celiac disease or another form of gluten intolerance. People with celiac disease react to different levels of cross-contamination, sometimes without being able to feel the damage being done. Follow up testing can let you know whether the level of risk that you have chosen is adequate to promote healing of the villi. Knowing the level of damage done and whether you have healed can make a difference in determining what other diseases may need to be screened for as well.

      If I have a positive celiac test, then others in my family may take it seriously and get tested themselves.

      Hopefully my experience can at least serve as a cautionary tale for others. Before going gluten-free, get tested for celiac if you have any inkling you’ll want to know later. It sucks to reintroduce gluten.

  • Jen

    Thanks for sharing this . . . wow you are brave! I am not sure that I would want to mess around with the stuff that I know triggers my issues — SOY (but I see you have issues with it too since you needed to buy soy-free eggs). That stuff almost killed me.

    It’s amazing to me how some people are so affected by gluten and others are not — as with other allergies. Is it something in the genetics or an autoimmune thing created by diet/environment?

    • Joy

      You’re probably smarter than I am, Jen. My issues, while uncomfortable didn’t bring me to the brink of death (yet), so it doesn’t feel like quite as big a risk. I do notice symptoms from soy, it sends me running to the bathroom in a most miserable way.

      With gluten there are a number of ways to be sensitive to it. There are autoimmune reactions to gluten (celiac disease & dermatitis herpetiformis are the big ones, but liver, thyroid, arthritic, neurological, etc autoimmune problems can be gluten-mediated as well). These have a genetic component. Other gluten reactions such as ataxia also have a genetic corrolation. Having the genetics is a risk, not a guarantee. Usually autoimmune reactions are triggered by an experience or something in the environment. Then there are IgE reactions and IgG reactions. IgE reactions are “true allergies,” IgG antibodies are one kind of intolerance, which is often caused by gut dysbiosis & leaky gut.

      There has been both an increase in diagnosis of these conditions, and an increase in prevalence. Diagnosis has not caught up with prevalence yet. In my case, I had no idea anything was wrong with me. I had lots of nagging problems, but did not correlate them to food. I could “eat anything.” It was only after changing our diet and seeing improvements over the course of a year that I realized I really did have a problem. I suspect a lot of people are in that boat.

      • Jen

        I apologize for not remembering the comment I made here. I finally remembered to come back and see your response (I am a bit of an airhead sometimes – maybe it’s gluten) :)

        To be honest I am so overwhelmed with the things I know I have issues with that I am scared to think of one more thing that might be a problem. However, I don’t eat much with gluten in it. I make everything from scratch. The one gluten thing I really love is properly prepared sourdough bread. But I just saw a gluten free book for it on Real Food FOrager that I might check out. But even that is a very seldom treat. I try to only eat things that will really nourish and bread is at the bottom of that list.

        I really appreciate your research on this topic as it is so in depth and personal. Maybe someday if you are up to it you can do a guest post at our blog. I know many people who will benefit from your knowledge.

        • Joy

          Hi Jen,
          I know how it is with the comments… I often forget to go back and see what’s happened to mine. I’ve started bookmarking them but still I sometimes forget.

          I’d love to do a guest post for Real Food Freaks. I always enjoy reading what you all have to say and would be honored to be on your blog.

          I don’t think everyone needs to be gluten-free, and I totally get not being in the place to try it right now. Baby steps are ok.

          It is a big one to look into, though, if you are having unexplained health issues. It can impact people in such a wide variety of ways. It can also be at the root of other intolerances (for example, lots of lactose intolerant people are fine with it after having been gluten-free for a while). Of course, I’m on fire about this because of our personal experience. :)

  • Jennifer Reyna

    How much longer do you have? The tingling and numbness is a sign of nerve damage and that is very worrisome Joy.

    • Joy

      I was going for 3 months, but the 2 month mark is at the end of next week. I’m considering calling it off then.

      I know my nerves are involved… the tingling and numbness are things I have dealt with my whole life… it did get better on GAPS but returned with too much fruit, especially before bed. Hypoglycemia gives me bad neuro symptoms.

      I do think the feelings in my face especially are neurological and due to the gluten. I have a hard time with the idea that the level of symptoms I’m experiencing now over these two months is leading to irreversible symptoms, because I have had it worse before and it did get better with GAPS. I hope I’m not kidding myself.

  • Wow! All of your symptoms sound like exactly what I used to feel like. Thank you so much for the reminder about why I don’t eat wheat. You even named some symptoms I used to have that I never connected to wheat. Very interesting!

    I do understand why you want to get testing. When I first started thinking that I might have an intolerance, the symptoms seemed so vague to me that it I had a hard time staying 100% true to the diet. When I got pregnant with my 4th, I realized my morning sickness was exactly like my sister’s celiac symptoms. Apparently my symptoms get much worse while pregnant. Once I got off all wheat, my morning sickness completely disappeared. That was like my “test”. If wheat did that to me while pregnant, it couldn’t be good for me any time.

    Thanks for sharing!

    • Joy

      Your welcome, Melanie, and thanks for telling me you understand wanting to get tested. So many people don’t understand that.

      I’m glad you are doing so well off wheat (and all gluten, I presume?). I think as time goes by it can be hard to remember how things really were. I’m glad I’ll have this record to look back on!

      So many people find their symptoms worse when pregnant. Pregnancy can even trigger celiac disease. It’s great that you figured it out. I’m sure it was better for your baby that you were able to cut it out during your pregnancy, and better for you and the whole family that you’ve been able to stick with it!

  • Rebecca Fender

    Hi Joy ~ I discovered your blog through my friend, Jennifer Reyna, and have been devouring your journey over the last few days. I’m sorry for the discomfort and ill-health you’ve been experiencing during your challenge, but I have to say I’m so happy to see that someone else experiences similar symptoms to my own when consuming gluten. For me, even grains are dangerous territory. It’s comforting to have my own symptoms affirmed and to know that one more person’s story confirms I’m not totally crazy. Consuming gluten and grains has the greatest impact on my mental health, which I know is ultimately related to my gut health. My anxiety and depression are uncontrollable when on the gluten and grains. When I’m gluten and grain free, I can think clearly, and my anxiety, OCD and social phobia is almost non-existent. My depression completely lifts, and I feel like I’m in control of my own life again. Thank you for sharing your story. I admire your determination, and I hope your results confirm your symptoms and that you have a quick and easy return to good health!

    • Joy

      Hi Rebecca,
      I feel the same way, hearing from you, so thanks for taking the time to comment! I never believed it until I took ‘em out and put ‘em back, but grains really are no good for me. It’s so hard for me to take mental symptoms seriously… they’re “all in my head,” right? But actually, those symptoms are the scariest of all. Thanks for the well wishes. I’m glad to hear you are doing so well. How long have you been grain free?
      Joy

  • So sorry you’ve had to go through all of this. I’m glad this phase of your journey is almost over. I hope you get some definitive answers.

    I also have suffered from many of these same symptoms. I was struck by the ringing in the ears, because I noticed it in myself the last time I had a significant dose of gluten. I hadn’t had it in ages, so I immediately suspected that gluten was the cause.

    I agree with other commenters that it is nice to have validation.

  • James

    I’m thinking of doing a gluten challenge, but how do you find the amount of gluten in different foods? I wouldn’t want to eat 4 slices of bread everyday. More likely a combination of bread, oatmeal, cereal, pizza, tortillas, etc.

    • Joy

      Hi James,
      It’s not perfect, but I used the protein content of foods that are primarily gluten containing grains. Oats do not have gluten in and of themselves, though they are cross-contaminated unless clearly marked as certified gluten free. You would not want to use the protein content of oats as an indication of the gluten in them. Wheat, rye, and barley are all high in gluten.
      Joy

  • Kris

    Really- call it off and go get the test! 3 months is excessive, especially when you feel terrible. If your body was going to produce antibodies, it would have begun the first day. Quit making yourself miserable and get the test!

  • Natalie

    Thank you so much for sharing this! I’m into Day 5 of my gluten challenge. I’m having a biopsy within 2 months to check for celiac after my blood test came back negative. So many things you’ve written here, I’ve started going through myself (including the initial lack of symptoms – I was beginning to feel like a fraud). & that picture of your stomach – mine is looking exactly the same right now! Part of me was starting to wonder if I was pregnant, even though no other symptoms were there :P

    Anyway, I just wanted to thank you for your complete honesty here, I’m grateful for your TMI! It’s nice not to feel alone, & to understand my own experience through reading about someone else’s. Much appreciated!

    • Joy

      Thanks for your comment, Natalie! Sometimes I feel a little insecure about sharing so much. It’s good to know it helps someone :) Good luck with your challenge. If it gets too bad, please do quit! I didn’t end up getting a biopsy (I have no insurance) but my blood work after the challenge was negative. I did, however, get my proof! Celiac or “just” gluten sensitive, I finally have my answers.

  • Kiri

    So I did kinda laugh out loud when you mentioned the preggers belly from gluten, i have that too. It is an off occasion that mine isn’t bloated. I have had the same issues with my hands and feet. Where I could not open and close them. I have been off gluten mostly for a year. Two times I started eating it to do the test, both times I could not eat enough but we did blood work anyway. Still waiting on results. I am finding dairy to be an issue. We have been doing GAPS but not intro. So grateful for your blog. Have you experienced deficiencies? Iron? Potassium? etc. I have and wonder if its part of this.

    • Joy

      Hi Kiri,
      Thanks for reading and commenting! I’m glad my belly could bring a smile to your day… sometimes we just need to laugh at ourselves to get through this!
      Many people with gluten issues have problems with dairy, too, so you are definitely not alone on that one. Depending on the type of reaction you have and the type of milk you drink, there is a chance it may be something that resolves, though! Lots of people with celiac damage stop being able to produce lactase. People with a leaky gut often have issues with the casein making it through the gut lining and across the blood-brain barrier in its opioid form. And homogenized milk products are so removed from their natural state as to be difficult to digest. Even pasteurized milk is harder to digest, as the helpful enzymes and bacteria have been destroyed. I’ve found I can tolerate homemade yogurt and kefir from raw milk, as well as ghee (which is very close to just the butterfat). We have a post about raw milk and GAPS you might be interested in.

      As far as deficiencies, I have been iron deficient in the past and probably have had other deficiencies but didn’t have screening done. When your gut is damaged you have a hard time getting all the nutrition from your foods, so it’s a very common problem. We cook in cast iron (that has been decontaminated from gluten!). We also take the Green Pastures Fermented Cod Liver Oil and ConcenTrace Trace Mineral Drops when we remember to. Of course we eat a lot of nutrient dense foods, too!

      I hope you get your answers and feel better soon!

  • Tash

    Just looking thru this and I totally have the same problem with my hands. I never associated it with gluten at the time just blamed it on too much horse riding but now I can see the sypmtoms did only flare up when I was back on the gluten. Thankyou for sharing your story and reminding me why it is so important to stay gluten free =)

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