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Belly Ache.

My celiac tests came back negative.  So did my IgA or IgG AGAs (these could be exactly the same as a celiac test but I do not know all the lingo and thus, I remain clueless).  The basic gist is that my body seems to have no trouble at all with gluten.

Except that it totally does.

I don’t know exactly when it started, but I’d say about eight months ago.  That’s when the first nondescript symptoms came into play.  My weight went up a little bit, despite the same amount of exercise and generally eating the same mostly-healthy foods.  My stomach wasn’t upset so much as a little uneasy, and my abdomen felt slightly tender after some meals … and other times without any known catalyst at all.

But I’m not good at keeping track of when things “start to change.”  The only way I knew that my weight was changing was because my clothes fit a little bit differently.  My blood sugars were fine, and my overall health seemed fine.  The decline into “not so fine” wasn’t fast, but really slow and subtle until all of a sudden, I was like, “WAIT.  Just a frigging second.  Why do I feel sick all the time?”

In the last three months, I’ve been acutely aware of not feeling well, and the list of noticeable symptoms grew week by week.  I was exhausted – falling asleep on the couch and having trouble maintaining my normal vampire hours.  I was moody and grouchy, especially later in the day.  (And I’ll just offer this up because I know you’re thinking it:  I’m not pregnant.)  My hands, on some mornings, were tingly and pins-and-needlesish.  And my stomach was angry, but in a really passive-aggressive way.  I had sharp pains in my stomach, but not all the time.  I had wicked bloating, but not intensely all the time.  I just had a permanent belly ache, and it was becoming the norm.

And I was permanently belly aching about it.  The only thing that alleviated symptoms was to cut out gluten, but I didn’t do it consistently enough or in a dedicated enough fashion to really assess if going gluten-free helped.  (Sadly lazy, but true.)  On the whole, our family is about 80% gluten-free, but apparently the 20% was enough to leave a trail of blargh.

Thankfully, my endocrinologist is thorough, so when I saw her a few weeks ago, she ran all the appropriate tests to rule out different this’s and that’s and to help establish certain baselines and other fancy doctor/patient discussion things.  My thyroid function is fine.  My A1C is fine.  My blood pressure is fine.   Nothing came back flagged as an issue.  (Except the whole diabetes thing.)  Which made me feel weird, because the absence of a concrete YES YOU HAVE A GLUTEN SENSITIVITY made me feel a little powerless, like I was just grasping at straws.

In efforts to take some definitive steps towards actually doing something, I talked with Sara(aah) about this issue, and she and I compared symptoms until I felt confident that, even if the tests didn’t flag an issue, there still could be some kind of correlation.  Whether gluten is the root cause or just a trigger, its absence makes me feel much better.  I can’t dispute that fast-becoming-a-fact.

So for the last week, I’ve been running my own gluten-free tests.  And fortunately for my body, it seems to help.  (Unfortunately for my preferences, though, because I love Italian bread and all that jazz.)  It’s been almost a full week now without a whisper of a symptom.  It’s been months since I’ve gone more than a few hours without a sore belly, so this is a step in the right direction.

My plan is to continue to go with my gut and do what makes my body feel better.  If I go against the grain, I’ll feel better.  It’s a diet omnivorous about sticking to, but I know it’s best in the long run. 

… more gluten-free puns once I cook them up.  For now, you’ll have to wheat.

 

36 Comments Post a comment
  1. Kerri,

    Thank you for writing this post. I have been saying for months that whenever I eat large amounts of Gluten I feel a different way from when I don’t. I’ve been thinking about going Gluten-Free by choice, but was having a difficult time with it.

    I’ve always been a bit “scared” to get any sort of testing done because of the possibility of the test coming back positive.

    I think I now will.

    09/12/14; 2:48 pm
    • I kind of wished for a positive result, if only to have clear path towards feeling better. The results aren’t scary, but not feeling well can be. I hope you get the test.

      09/12/14; 2:49 pm
      • Sarah #

        I went through this a few years ago (I’m type 1 30 years) and the tests were crazy. As was the Dr. There are differences in allergies and “sensitivities.” Sensitivities won’t show on tests but can feel very real in your body. Stick with what feels right:) Maybe it isn’t the gluten it’s a different wheat protein either way your body is telling you what to do!

        09/14/14; 9:40 pm
  2. I am in the exact middle of these tests. The stomach ache and tenderness, the tingles, the bloating, the everything.

    I am scared. Super scared. Because I find constricting diets tends to lead to even worse things for me mentally.

    You know what’s shitty? Getting a stool sample for your doctor.

    09/12/14; 3:03 pm
    • Yes, the idea of a “diet” makes me twitch like mad. :\ I hope your tests come back good.

      09/22/14; 6:11 pm
  3. Amy #

    I’m not a doctor, and I’m just beginning to look into this myself so I can’t say a whole lot with any authority, but look into magnesium supplementation – specifically magnesium chloride, because I guess it’s absorbed easier with fewer side effects.

    A lot of my own health struggles are linked with magnesium deficiency, and while I’m not personally gluten sensitive, that’s something that jumped out at me while I was researching my own stuff (migraines, eczema, asthma, anxiety, etc.) as it relates to magnesium.

    I’m taking 1000 mg/day, and I figure at worst it’ll result in some very expensive urine. At best it might help? Or cause a placebo effect? Talk to your docs and research, I have no idea what magnesium would do to your diabetes meds, and I’d hate to make you sick, but I feel like I’m on to something with my stuff, and I flagged the gluten stuff for later with regard to magnesium because that’s something my mom struggles with.

    Be well,
    Amy

    09/12/14; 3:04 pm
  4. denise #

    HA! Love the puns, Kerri.
    And Alanna, good one!

    09/12/14; 3:18 pm
  5. Stephanie #

    I’ve been going through something similar, but mine includes being itchy anywhere, at anytime, sometimes with a rash like eczema, sometimes not. I’m trying to rule out possible food allergies and this week i’ve been cutting out dairy. seems to be helping a little, but i’m still not sure. I was going to test for gluten next. is it possible you have a wheat allergy (as opposed to celiac). that could maybe have similar symptoms from what i’ve read. i went to an allergist a while back, but he was a douche and not very helpful. i’ll be going to a new allergist in a few weeks to get a second opinion.

    09/12/14; 3:27 pm
  6. Jessica #

    Kerri, I just read “Graun Brain” a few weeks ago because of different issues I was having, and found it very interesting…some of the suggestions may help and the way it’s presented makes it easy to understand what gluten does to you if your bady can’t tolerate it.

    09/12/14; 3:35 pm
  7. dpcfmander #

    I too was in a very similar state 8 months ago, except that my “symptoms” were more large scale and debilitating. I had been trying to deny that gluten was any problem for probably well over a year, as the symptoms creeped up in intensity.

    I never bothered with the test; I just tried cutting down on gluten (like you, I find 80% free is managable, 100%… not so much) and my symptoms slowly weakened. However, I will say that the real tell-tale sign for me is when I *do* eat a piece of cake, or toast, or something YUMMY again.

    I’ve searched for and seen lots of random Web articles on a not-insignificant link between diabetes and gluten intolerance, primarily that their both auto-immune stuff.

    Good luck in your experimentation, and thanks for sharing. I’m now of the opinion that there are more of us “just gluten-intolerant enough to feel miserable, but not enough to pass any tests” people that are unaware and will benefit from posts like this. ;D

    09/12/14; 3:37 pm
  8. Sarah #

    One thing to keep in mind is that a lot of times, tests won’t show anything until there’s significant damage. I would try maybe going back later and be retested again. Or, just keep on with the GF diet and just do what makes you feel better.

    09/12/14; 3:44 pm
    • I completed agree with Sarah regarding the potential for tests to not show anything until there’s significant damage.

      Kerri everything you described in your post happened to me (pre celiac diagnosis) however one test that you did not mention, though it might have been tested for already, was IRON levels. That was the only consistently messed up thing I had going on for years and years….dangerously low iron level, no stores to speak of and after trying for years to alleviate the iron problem my symptoms got worse (similar to the ones you described) and I was finally tested for celiac and found to have it (of course). I mean, it was 15 + years of this before a Dr I work with professionally offered that test as a consideration.

      I know that diabetes plus celiac seems like it makes for a horrifically challenge diet, but I can assure that it doesn’t have to be. It is a major change no question….but you’ve already managed to deal with the diabetes so the addition/change of another dietary thing that you know makes you feel better….likely won’t be quite as hard as you imagine it to be. Plus, if it makes you feel better….go for it!

      09/12/14; 5:33 pm
  9. Teresa Werner #

    You def have to go with your gut – pun intended! 😉
    My Ava tested positive for celiac last spring – she
    Had an endoscopy procedure and despite the
    Dr saying it def looked positive when he came out,
    The results came back neg for celiac. Ugh! At FFL
    2013 she participated in the study and was tested,
    And again it came back positive for celiac. We decided it was
    Enough and went GF last fall. She doesn’t talk about
    It much but she rarely cheats which says a lot for a
    10 year old so I know it’s because she feels so much
    Better. It will get easier!

    09/12/14; 4:03 pm
  10. Melissa E #

    Hey Kerri, I had the same issues…obvious gluten issues, negative tests, etc, etc. My allergist ran a Celiac genetic marker test. Based on the number of markers you have, it tells you whether you have a chance of developing Celiac (if you have no markers you wont develop Celiac). I had something like 9 of the 10 markers. Meaning that I was in the highest risk category for developing Celiac. Her theory based on the results is that I don’t technically have Celiac yet so the antibody tests don’t show it, but that because of my markers I am sensitive to gluten and will more than likely develop Celiac in the future. But! Because I am already avoiding gluten, I wont really ever know if I develop Celiac, unless I start having cross contamination issues. Here is an article on the genetic marker test..http://www.uchospitals.edu/pdf/uch_007936.pdf

    Hope you feel better!

    09/12/14; 4:04 pm
  11. If you need any help/suggestions, ping me. We are a year into this and do a split household where 3 of us eat gluten and 1 exceptionally bouncy young lady doesn’t. I’m a big believer in “if you’re still getting trace gluten, you’re not gluten free” and that is honestly the hardest part of eliminating it – all the little things. Separate toasters, separate butter, separate cutting boards, barely eating out, etc. We literally have only about half a dozen items in the (separate) pantry that do have gluten and I’ll allow it only on one portion of countertop. But I know which GF brands of everything taste good, so let me know if you’re stranded on an aisle and can’t pick between the Betty Crocker and the King Arthur brownie mix (get the King Arthur for brownies). For bread, I don’t care what anybody tells you, you should try Canyon Bakehouse. 🙂

    And mainly, I hope you figure out how to feel better…whatever that entails.

    09/12/14; 5:14 pm
  12. Diane Fuchs #

    During this past year, my 27-year-old daughter went through the tests for celiac, too, and they came up negative. But the symptoms would abate when she avoided gluten. My understanding is that these tests will only be positive when body has reached a certain level of damage, so it doesn’t help to say they are negative when you haven’t been having symptoms for very long. She found she felt even better when she avoids ALL grains, although she isn’t as strict about this as being G. And then she also found out she is sensitive to nightshades, so she avoids those, too. She wrote a lot about this on her blog: Living a Warrior Life. You might have to dig around a bit to find her entries about her GF journey. If I did this right, here is a link to her post about her GF “experiment”: http://livingawarriorlife.com/category/warrior-life-wellness/page/4/

    09/12/14; 11:56 pm
  13. Diane Fuchs #

    In my comment I just submitted, there is a typo. One place I put “G” and I meant to say “GF” so if you are going to publish this, could you make the correction for me? Thanks! 🙂

    09/12/14; 11:58 pm
  14. Bethany R #

    I’m in a similar boat. Celiac tests were negative, but I’m not convinced I ever ate enough gluten for the antibodies to be sufficiently present for a positive result anyway. Now I eat 99% gluten free. (The 1% is the stuff I’m not checking for on ingredient lists.) It made a big improvement, but for me I also had to go a step further and remove a lot of dairy before I really felt better. (I was always a bread and cheese girl, so this was painful.) I still eat hard cheeses, but creamy dairy tends to be a problem (e.g. yogurt, soft cheese, milk, etc.) The thing I frequently find frustrating now is trying to explain at restaurants/events/dinner parties what my restrictions are and why. I don’t have an allergy and haven’t been confirmed celiac, so it makes it sounds like I’m just picky or following a fad. I maybe shouldn’t let it bother me, but it does. If you haven’t already encountered these situations, be prepared! Good luck, and I’m glad to hear that you’re getting things figured out and feeling better!

    09/13/14; 9:41 am
  15. Exactly Kerri!

    I can’t tell you why it works and why I feel better (tested negative for celiac) but I know I do. For me, that is worth the inconvenience of being “that girl” in restaurants and at friends’ homes. Thankfully I can make my own home 100% gluten free with no one to complain.

    09/13/14; 1:56 pm
    • That girl = Mary Tyler Gluten

      09/13/14; 2:07 pm
  16. I read Laddie’s self-experiment with a gf diet with great interest. (Spoiler alert she felt nothing changed.) I blame my family’s gf diet for my lack of superhuman amazing feelings on the Whole30 diet. Since I already don’t eat gluten, I already have been feeling my maximum level of awesomeness all along. (Which is not very awesome.) You, on the other hand, will likely feel better and better!

    09/13/14; 2:05 pm
  17. I’m glad you’re feeling better! I’ve heard and read that everyone with T1D should stay away from gluten. I try to avoid it, but I’m not strict enough. I want to follow your lead! Keep feeling good.

    09/13/14; 2:23 pm
  18. My husband took the ALCAT test last fall (please no hateful comments). It showed mild gluten intolerance or sensitivity. So I’ve made him eat gluten free (allowing the gluten free Bob’s Red Mill oatmeal). His symptoms don’t fall into the “celiac” realm but close. He’s been doing much better and keeps pointing out articles about how it may be something else besides gluten that’s bothering people. I agree with an earlier commenter, it could be wheat or a specific grain besides gluten but who knows?

    His major (red) areas were egg yolk, cow’s milk, and brussel sprouts. But he had a ton of stuff in his orange and yellow areas. Then blue/mild for candida (gluten) if anyone’s wondering. 🙂

    09/13/14; 2:59 pm
  19. Karen #

    I have had similar experience to you in terms of symptoms-pain, bloating, weight gain, rashes, itchiness…. I knew I felt much better when I eliminated wheat from my diet so naturally assumed celiac disease. Tested negative for celiac but positive for genetic markers. Endoscopy confirmed negative for celiac so given the general IBS diagnoses. My gastroenterologist acknowledged that I certainly have problems and told me that there are a group of foods called FODMAPS that often cause symptoms like mine. He told me to read “IBS-Free at Last” by Patsy Catsos. He said many of his patients find relief from IBS after reading it.

    This book was a lifesaver for me. First, it walks you through an elimination diet to temporarily remove these common trigger foods in order to calm and reset your digestive system. Next, you challenge each of the 5 FODMAP groups in an effort to induce the symptoms. Within a few days of starting the elimination diet, I felt great. Better in fact than I think I have ever felt in my entire life. All my symptoms were gone. Then I started the challenges. I found out why I felt better when I eliminated wheat from my diet. I can’t tolerate foods in the fructun groups-wheat, barley, rye, broccoli, garlic, onions, brussel spouts, inulin (in everything it seems), chicory root….

    Anyway, my point is that you may not have an issue with the gluten per se, but a larger group of foods like I do. Going gluten free may help because you inherently eliminate a common FODMAP-wheat. As long as I keep fructuns out of my diet I feel great and it is easier, I think, that actually being gluten free. Working through the elimination diet and challenges takes some and effort, but it’s manageable even with T1. Truthfully, you have nothing to lose and a lot that can be gained.

    09/13/14; 5:28 pm
  20. I tested negative for celiac, but do have “wheat belly” symptoms and am allergic to yeast, so easy peasy for me to give it up. I just saw my Endocrinologist last month and am wobbling on the fence of a hypothyroidism diagnosis. We’ve been watching numbers for now. I experience gut disturbances all too frequently [duh, every day] that sound like what you are describing. Pain, bloating, gurgling, and bouncing from constipation and diarrhea or both at the same time. I asked my guru if I should see a gastro doc. He says my symptoms are related to, and common of, a crazy lazy thyroid. My most recent lab results were around 3. If that number reaches 4, I start meds. It’s in my genetic makeup, so it’s only a matter of time.

    I do not have Type 1, but have lots of other things under the sun.

    I love magnesium and take a good calcium magnesium supplement, because the two are buddies. I range from 400-500 mg a day depending on how many fibrous veggies I eat that day. Since your body does not store magnesium (like iron), you can’t OD on it. What you will experience at higher doses is diarrhea – so if you add that to your diet, I would suggest ramping up on the mg slowly. You’ll find your happy place.

    I would also recommend doing an entire food igG/igE food study with Alletess. Many other food allergies or sensitivities could be the culprit. Iceburg lettuce makes me sooooo sick and gives me pain, bloating, gurgling, diarrhea. Imagine an 800 calorie lifestyle and no iceburg lettuce. Sheeesh!

    Feel better soon, Kerri!

    09/14/14; 10:35 am
  21. Lisa #

    Just like alot of people that commented…ME TOO!! I had all the same symptoms. Endo tested and said negative for Celiac’s. I went to an acupuncturist because I was having horrible stomach pains that my PCP dismissed. Within 10 mins of being at the acupuncturist’s, she did some test and told me to cut out wheat. So I’ve been **trying** to be gluten free for about 3 years and I feel so much better when I don’t eat it. So much better!! But it is hard when you are tempted with delicious bread. But at least we know what we are in for if we eat it…Good luck cutting it out.
    PS I have heard that sourdough bread is the best one to eat if you have problems with gluten…something about how it is fermented….

    09/15/14; 9:22 am
  22. Nikki #

    Thanks for sharing. I too am having similar issues with negative test results. It can be very frustrating especially when trying to explain to people that you have gone GF but are not “celiac.” My doctor gave me the best advice this past week – You don’t need a test result to tell you that you shouldn’t be eating gluten – you just need to listen to your body.

    09/17/14; 3:13 pm
  23. Over the past 38 years it seems like I have been given about 37 celiac tests. They always came back negative. To be honest, it never felt good to eat wheat even at age 12 but I was a dutiful daughter. Today I avoid wheat and really enjoy all the gluten free products. No more stomach ache – happier me, happier diabetes.

    09/19/14; 10:38 am
  24. ria #

    Over the 43 years with type 1, I have developed a condition called gastroparesis.
    There is not a whole heck of a lot you can do for it, except like every other diabetes complication, the better control you have, as a general rule, the less severe the symptoms.(not always, though)
    Who knows, maybe I would have had a screwed up digestive system anyway if I had not become diabetic.

    09/19/14; 3:24 pm
  25. Helen #

    Kerri,
    I was into my 39th year of T1 and suddenly developed celiac disease. I had been warned that anybody living “long enough” with T1 would eventually develop a secondary autoimmune condition. I felt so inexplicably lousy prior to the diagnosis that when I finally found out what it was I was thrilled. I’ll take it! I felt awesome again within a week and have never looked back. It’s been 3 years now and I have had no problems, even when travelling. I don’t bother with GF substitutions other than the occasional cracker. Ther are so many amazing and wonderful carbs in this world, I have never felt shortchanged or denied.
    I focus on what I CAN have and ignore what makes me feel like crap.
    I wish you many meals of feeling good- the motivating factor for me here is to never feel so crummy again. Celiac is a shockingly easy condition- this is no ‘disease’ like diabetes, all you have to do is avoid gluten. No checks through the night, and no hypoglutenia to deal with. It’s a breeze.

    06/18/16; 5:30 pm

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