When I Am Not Reading, I Play Gluten Detective (Part 1)

This post is in response to all of you who have asked me about a gluten-free diet and how it has helped me. Anyone who has been sick for a very long time or has dealt with odd symptoms might want to read this series of posts. I am not a doctor. I do not work in a medical field. This is simply my experience and if it helps one of you, then great.

I have been gluten-free for a year now. However, it was three years ago that I first suspected that gluten might be a problem for me. I am a relatively healthy person. I don’t get sick often, but five years ago I didn’t think I was going to make it. Here’s what happened:

I woke up one morning and my left elbow was sore. It was a deep, dull ache. A nagging ache. The kind of ache that over-the-counter meds can’t touch. I let it go for several weeks, but when I began to lose feeling in my left arm and could no longer hold a pencil, I made an appointment to see my doctor. He said it was either carpel tunnel or tennis elbow so he put me in a wrist brace and told me to keep an eye on it. Weeks passed, and the feeling in my left arm didn’t come back and had traveled down my arm to my hand. I began to drop things and had trouble steering my car with that arm. Back to the doctor I went.

This time, he noticed that I was favoring one foot when I walked. After the exam, and all that poking and prodding, it was determined that I had lost some feeling in my left foot as well. I immediately thought “stroke.” He thought, pinched nerve and sent me on my way. At this point, I didn’t know what to think. I never had these issues before and although I didn’t think my doctor was being aggressive enough, I did think he was listening and he has always been a good listener.

Months later, I returned to the doctor with increased numbness, increased pain and what had started on the left side, was now traveling to the right. It’s hard to imagine having pain AND numbness, but I did. What wasn’t numb, hurt like hell. Not just joints but in-between the joints, too. If you touched my arm, it would hurt. If I sat for too long, it hurt. Shifting my car from Park to Drive, hurt. At this point, my energy was gone. I was lethargic and could not walk from the parking lot to my office. I did. I did walk, but I felt as if I couldn’t and wouldn’t make it if I tried.

The doc tested me for all sorts of things. Lyme disease was one possibility since it all began after a trip to Yosemite. That test was negative. Actually, everything that he tested me for was negative except for inflammation tests (which were elevated).  But what was causing the inflammation? In the mean time, I was just trying to live. Working was difficult because on the outside, I looked healthy, but on the inside I was falling apart. My family and friends were not supportive. There, I said it. When you look well, it’s hard for anyone to understand just how bad off you really are, and then the doctor couldn’t find anything, I think most thought it was just in my head. However, I was convinced that something was seriously wrong.

After more than a year of this, everything continued to get worse and my hair started to fall out in clumps. Additionally, I had small fissures in my bones that were healing on their own, but no one could explain what caused them. I had bone density tests which did not show anything abnormal. That’s when my doctor ran tests to screen for Lupus and other auto-immune diseases because it certainly seemed as if my body was attacking itself.  Lupus is a strange disease. There is no “lupus” test to tell you whether or not you have it. There are tests to show elevated levels of certain things which point to Lupus, but it’s very vague and out of all the tests he ran, some of these came back positive.

So…it was Lupus. Maybe.

[To Be Continued]

34 thoughts on “When I Am Not Reading, I Play Gluten Detective (Part 1)”

  1. Thank you for sharing your story, for putting this out there. It’s an important message that may help some people.

    Until last week I may not have understood your comment about looking fine but feeling horrible (see fb post). But now I get it.

    I’m beyond excited to know that GF is working for you.

    1. The other thing to note too, is that some people handle pain better than others. Apparently, I could handle a lot of pain without it showing in my face. Walking on fractured bones for months without anyone here at work knowing how difficult it was for me just to get a copy from the copier. It was beyond tough. I finally had to tell my boss because I couldn’t do it anymore.

  2. I remember you talking about this earlier and how they were testing you for Lupus. I’m so glad that it was just a gluten problem, though this must have been terribly frightening.

    1. When the Lupus tests came in, I didn’t think it could get any worse, but it did which I will share in part 2. No one should have to spend 5 years of their life sick when they don’t have to.

  3. I am so sorry that you had to go through this and that it was so difficult for you. My husband had some of the same problems over the past few years, and they finally put him on a gluten free diet, which seemed to clear up a lot of things. I can’t imagine how horrible it would be to be so sick, and not have any idea what caused it, or to have the support of your family and friends. That’s one thing that I went through with my husband. He looked fine, and it was hard for me to realize that inside he was hurting. When I finally began to respond to that, things got a lot better for him. I feel bad admitting that, but sometimes I can be a little nonobservant. I am really curious to read part 2 and discover what happened, and what finally worked for you!

    1. Heather, don’t feel bad for admitting what you have. Even as I was going through all of this, I knew it was hard for people to understand. I found this post one day and it helped to have people read it, because at the time, it was exactly how I felt. This called the “spoon” theory. It’s long, but valuable for understanding silent illnesses.


  4. I am glad you are sharing your story here, I’m sure it could help people with the same issue. I went through a process of discovery with my hypothyroidism, that thankfully only took about six weeks, but it was the longest and scariest six weeks of my life. Usually hypothyroidism develops slowly over time, but I went from being healthy and energetic to being bedridden and so weak I could hardly walk within two weeks. I thought I was dying and the doctors couldn’t figure out what was wrong. I dealt with some unsupportive relatives too. The neurologist thought I might have something degenerative. It all came to a head with me passing out and ending up in the emergency room where they thought I might have a heart condition but then tests finally revealed hypothyroidism. The doctors said they had never seen TSH test scores change so quickly (because I’d had a test two weeks before that was in the normal range). Anyway, I was thrilled to have a diagnosis, but it took me a while to get over the callous reactions some relatives had had to my complaints of feeling ill. It was like they were thinking, “Now that a doctor has officially diagnosed you I guess you have an excuse for feeling lousy, and maybe you really weren’t feeling so great.”

    Anyway, I should stop babbling about my own problems… I am so happy for you that you have figured out what was causing you to be sick, and that you are able to feel better now! I look forward to the next part of your story.

    1. Family can be a real pain sometimes. I won’t even repeat what The Hub said to me in the middle of all of this but I swear, I could have divorced him over it. And my friends at the time…rolling their eyes at me because I didn’t have the energy to attend their Tupperware or PartyLite party. They are no longer my friends BTW. So glad you got your diagnosis. That stuff can be scary!

  5. My mom has lupus. She was so ill when I was young, but once she was diagnosed, the meds began to help her. She still has lots of health problems, but the woman she is now is so much healthier than when she was my age.

    I have to say that after all these years, I know I can be insensitive to her. She has daily migraines and has tried all sorts of treatments for them. At some point, I think they’re ludicrous, but I also know that if I had that pain all the time, I’d probably grasp at straws too.

    I’m so sorry that you’ve had to deal with this. For my part, I’m constantly reevaluating how I deal with my mom because it isn’t something I understand, and I know it’s something she lives with all the time.

    1. I can be a bit insensitive as well but this experience has made me less skeptical and more supportive when I can be. The one thing that held me together is that the doctors ALL agreed… that there was something wrong. That is was not in my head. The tests they took came back with elevated levels all over the place, but they never pointed to any one disease. I will talk more about the specialists that I had to see before I figure it all out on my own.

  6. Crikey, Ti! That is awful to have to go through and terribly scary. I’m so glad you are doing much better that you are GF and do not have Lupus. I’m looking forward to reading part 2 – thanks so much for sharing this with us 😉 By the way, I know what you mean about looking well and feeling like crap – that’s how it is for me with my AIH (autoimmune hepatitis). It wasn’t until I turned yellow last year and could barely get out of bed that my family and friends realized how sick I really am. Its frustrating when people don’t take you seriously about how you feel, just because you happen to look healthy on the outside – they have no clue what is going on inside. Anyhow, I hope your family and friends are there for you now and I really do hope that you feel great 🙂 Take care, chica!

    1. To think that you had to turn yellow for someone to notice how bad off you were. The auto-immune stuff is hard to deal with because when your body attacks itself, your body and all parts of it are fair game. I had eye issues, joint issues, muscular degeneration problems and not to even mention my poor teeth that just began to break for no reason.

  7. I knew about the Lupus thing, and a good friend of mine has it so I know it is a really big deal. God love you. I am anxious to hear the rest of your story. I do know that Matt (A Guy’s Moleskin Notebook) went on a gluten free diet awhile ago and lost like a billion pounds or something. He says he feels better than he has ever felt in his life.

  8. Thanks so much for sharing this — I can’t even imagine living through that — and society can be so unforgiving when you don’t have typical symptoms that are easy to see. My neighbor has gone on a gluten free diet after having a very similar experience to yours — she looks 180 degrees better than a year ago. My wife and I have modified our diets when we feel out of whack and it always helps — but hasn’t been ever prompted by a dr. We’ve seen nutritionists though who are confident GF is healthy and can keep people healthy!

  9. I’m very very interested in your story, Ti. I have a dear friend and coworker who has gradually went downhill for the past year. She’s being treated at U of Michigan right now but they still don’t know what is wrong with her. Her symptoms started with hives…and then it all went south from there. They say no to Lupus but that she has some sort of Auto-Immune Disorder. They had her on steroids for so long that she now suffers from dead-bone disease in her knees. She has a hard time walking on a daily basis and she’s only 39! She goes in for knee surgery in April. They’re going to drill holes in her kneecaps to hopefully alleviate the excruciating pain that she is experiencing. I know that she totally understands about people looking at her and thinking what is she bitching about…she looks fine. She rarely gives herself the right to cry. I worry about her mental stress with all of it. I look forward to your next post!

    1. Oh Staci…sounds very similar to what I went through. I was on steroids too at one point. Has she ever tried to go Gluten free? Even just for a week?

  10. It is great that you are sharing your story. People don’t realize what others are going through and when even a MD doesn’t know, it can make us look crazy. I’m have some stomach issues now which we haven’t determined the cause….anxious to read more about you story. Thanks Ti

  11. Oh my God! You poor thing. This must have been awful. I’m a huge advocate that you know your own body and, when it is not working correctly, you know it. Dr.’s aren’t always in tuned with us personally. They send us for tests etc. or worse yet, they poo-poo our complaints. I am sooo glad you were able to find out what the cause was and are able to fix it.

  12. It’s terrible how hard it is to diagnose lupus. The symptoms are usually all over the place, and doctors end up diagnosing wrongly, until nothing works, and then it becomes, Oh yeah, hello lupus! One of my best friends’ illness started with a rash case of sun allergy. It was going to be a long time before the real name came out. I’m glad you persevered and I hope you are much better now. I’m sorry you didn’t have much family support then. I know how that goes. Unless you are diagnosed with a scary disease, people can think you are whining! How sad!

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