Gluten Detective (Part 2)

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.

When I left you last week, I had just been diagnosed with Lupus. Initially, I was glad to have a diagnosis. My Rheumatologist put me on Prednisone and an antimalarial (what they use to treat Lupus) and I felt TONS better. The joint pain subsided which made me feel like a new person but as treatment continued… things were still not right and the disease, whatever it was, morphed into other things.

I had visual migraines (which were painless but involved periods of blindness)
I began to lose my voice.
My teeth began to break for no known reason.
I began to get the classic Lupus rash that everyone talks about.
I had asthma attacks even though I had no history of asthma previously.
Sometimes I would break out with blisters in my throat.
My left tonsil disintegrated. Seriously, it broke apart and vanished.
I got hit with adult acne.
Food got stuck in my throat.
There were days where I’d gain 15 lbs for no reason (overnight).
Men, cover your eyes…menstruation was a nightmare.
My lethargy increased (this took years to get really bad).
Iron levels dropped to 5 (transfusions were mentioned and declined).

Because of these symptoms, I saw many specialists. The Ear, Nose and Throat doc confirmed damage to my vocal chords. The Gastroenterologist said I had a Hiatal Hernia which caused reflux, which in turn damaged my throat and caused asthma like conditions. Because of the reflux, I must be bleeding somewhere internally which caused the low iron levels. Because of the asthma, I saw an allergist who tested me for all sorts of stuff and noted a sensitivity to soy and poultry. In theory, some of this made sense but much of it was just to rule other stuff out. Barium swallows, endoscopies and manometry (sensor put down throat for 24 hrs) all proved that there was no reflux.

In the midst of all of this, my GYN who is pill happy and wants nothing more than to carve out your uterus (no kidding) wanted me to get a hysterectomy. I had ultrasounds to rule out tumors which came back negative but she still wanted me to consider this drastic option. Plus, I do believe she hit on me. Talk about uncomfortable!

The turning point for me, came with the colonoscopy that was ordered by my doc. For those who have never had one, the test is a breeze. Don’t be afraid of it, but the prep work can be a bit of a pain with all that drinking and fasting. Mine was a 4-day fast and although I complained the entire time, by day 4, I was feeling normal. NORMAL. No weirdness. No visual migraines. Energy was good. No rashes. No asthma. The test went well. All was negative but the doc forgot to take a biopsy. Yes. He forgot.

As soon as I could eat, I did and within 3 hours I began to react to my food. That is when it struck me that it HAD to be food related. I went back to my allergist and he suggested I remove gluten for two weeks to see if anything improved. I did as he instructed and by end of that trial, I did notice some improvement so I continued with the gluten-free diet but didn’t consider myself 100 % gluten-free yet as I was still playing around with my food trying to figure out what I could eat.

Gluten is a protein composite found in wheat and grain species. The wheat was easy to avoid but the hidden gluten found in say…soy sauce or cosmetics was a larger issue. Cross contamination was a problem too. I’d order gluten-free pasta off the menu yet the cooks would prepare it in the same water as regular pasta. Hello?? You can’t do that!

I continued with my gluten-free diet for over a year, before my doctor noticed that my iron levels began to improve and my Lupus tests began to come back negative. He asked me what I was doing, so I told him. He then sent me for a Celiac test but you have to be eating gluten for it to be a true test, and I could not tolerate even one bite. I tried, but broke out in blisters down my throat and was out of commission for over a week. So although I do not have a positive result to show for it, I do live as if I have Celiac disease which involves damage to the villi of the small intestine when gluten is consumed. To translate, I was not absorbing nutrients. So all of those iron supplements were not doing a darn thing since I couldn’t absorb it and because my digestion was so off, I was polluted with a capital P.

I still test positive once in a while for Lupus but it’s a very weak positive and might have to do with cross-contamination of food at the time of my blood work, All in all, I am much better and believe wholeheartedly that gluten is the cause.

As long as this post is, I could have easily written ten more pages on the subject. Why? Because it really just skims the surface. I am a forty-something who wants to know exactly what is going on at all times. So many times, “I” had to ask the question. “I” had to suggest a test. So many patients are okay with whatever the doctor tells them but I am not. I want to see the numbers and I want to be told WHY something is being done. Most of my doctors were okay with that and in fact, encouraged it. Some, were not and that’s okay because I have other doctors in the network that I can see instead of them.

Thank you for your comments and concern. I am much, much better and my “off” days don’t come nearly as often now that I am used to eating this way. Stores are carrying gluten-free items and restaurants, for the most part, go out of their way if I make a special request. I find that most people want to accommodate me if they can, so I always ask. It can’t hurt, right? My vocal chords are permanently damaged so I no longer teach, as speaking is tough after a 10 minutes or so but my work accommodated me by changing my job description which I am grateful for.

If you have often wondered if diet could be the cause of your problems, you can always try to go gluten-free for a couple of weeks to see if it makes a difference. If you try it, let me know.

46 thoughts on “Gluten Detective (Part 2)”

  1. I am so glad to hear you are feeling better, what an ordeal! I think it is so important for all of us to learn to be advocates for ourselves in the medical world as insurance, prior knowledge, and biases all come out to play with doctors (well, with anyone, but you know what I’m saying).

    Last week I advocated for one of my students who had random bruising. I really worked hard to get her to a doctor, making phone calls, paying for a taxi, etc since I had a bad feeling. She found out Friday she has Leukemia and they have caught it in time to get her treatment. So, advocate, advocate, advocate!

    1. Your story gives me chills! That poor girl. I am so glad that you pushed her to go to the doctor and that her doctor acted on it. I am surrounded by students here at the university and these students wait until they are on their death bed to get treatment of any kind. They have the student health center that is paid for out of their fees and yet they never want to make that appt.

  2. Wow, Tina, I’m so glad to hear you are feeling so much better now, but sad to hear your vocal chords have been permanently damaged and that you had to go through all that before you figured out what the problem was.

    I’m also on a gluten-free diet without having confirmed that I’m Celiac. I actually did the blood test twice: the first time, my doctor “forgot” to tell me that I had to be eating gluten for the test to work (and I honestly didn’t think of it); the second time it came back negative (for a different doctor). As a result, I went on and off the diet a bunch of times, but since eating gluten makes me feel like I’ve been hit by a truck (I’m so exhausted), I’m happy to stay off it permanently now.

    Thanks for sharing your story with us!

    1. I don’t know why doctor’s can’t seem to remember to tell you about eating gluten before that test. It’s critical. I feel the same way that you do when I accidentally eat gluten… all of a sudden my limbs feel as if they weigh a ton, I barely feel as if I have a pulse and then all hell breaks loose with skin eruptions, throat closing up, sometimes blisters but not always. You mentioned the truck analogy. I feel as if I fell out of a 3rd story window.

  3. I am glad that something finally worked for you! It sounds like what you were going through was very frightening strange, but I know how you feel. My husband has fibromyalgia, and when he eats gluten, he is literally so sick that he can’t get out of bed. We just figured this out, and he has started eating better meals, but sometimes he forgets, and sometimes I have no idea what to cook for him. Since it’s a long term problem, I need to be looking for long term solutions. I have been emailing him these posts, and he is eager to find out what works for you, as some of his symptoms are similar. Thanks for sharing all this with us, Ti. It’s really helpful to a lot of people who are going through the same things.

    1. If he is as sensitive to gluten as you say he is, then he really needs to be mindful of everything…even pill coverings sometimes have gluten, as does toothpaste (sometimes) and other items you wouldn’t even think about. I think the best thing to do with cases like his, is to strip his diet down to clean, whole foods only and then slowly add things in. What is hard for people to understand is that even a tiny bit of gluten can do damage if you are sensitive and sometimes it stays in your body for a very long time. So you can’t say, this week I’ve been good so on Saturday I am going to have a slice of pizza. It’s all or nothing it seems. I hope he finds a balance that works for him. At first, I ate nothing but greens and small amounts of protein but I got tired of that quick. Now, with all the gluten free options available to me, I can eat a lot of what I like but even I get sloppy sometimes.

      1. Yes, I was not reacting to them last year but this year I seem to catch a reaction sometimes to cosmetics and some of the coverings and binders in my meds were a problem too.

  4. I really am glad that you are a proactive patient. So many of us are not. We really need to take a page out of your book and become more active in our care, especially in this country. Doctors are too eager to just prescribe medication that may not be necessary…its better to ask questions and find out what really needs to be done and why…and what treatment options are available.

    I’m glad you had the courage to share the whole scary story with us. Its a great lesson for others. I applaud you.

    1. Thanks! Now I have to get my doctor to wean me off the lupus meds. I tried at my last appt but he was still skeptical since my one test was slightly positive again. He’s afraid of sending me back into a downward spiral. I love my Rheumatologist though and I know he will work with me.

  5. I’m so sorry you went through so much, but really happy you found a treatment that works for you. It’s amazing things we take for granted like the food we eat can really make a difference. I hope your Gluten-free journey keeps going well. It sure is easier now, huh?

    1. It’s easier knowing what I can and cannot eat, but in another sense it’s always a challenge because my family STILL thinks that on special occasions, I can make an exception and have that piece of cake or slice of pizza. What has helped, and I didn’t mention this in the post and hate to even admit that it helps but The Girl is sensitive to gluten too. She is mindful of her own diet and I have yet to get her tested, but seeing how it affects her makes it easier for The Hub to understand.

  6. Crikey, Ti! What a nightmare! I’m so sorry you had to experience all of that, but I’m so happy you figured out what the root of the problem was. Sounds like you are on the right track and that you’ve gotten your health back on track 🙂

    Also, I think its great you are so proactive with your doctors – you have to be nowadays. Ever since getting diagnosed with AIH, I’ve been extremely vocal with my doctors – if I hadn’t been I would have no clue what their treatment plans would be or why they are prescribing certain meds – important things that I need to know (considering how strong the medications I take are). So, I am a big supporter of being your own advocate when it comes to your medical care – it is a must!

    1. I often worry about the elderly. So many times they go in and just take what is given to them without question because they come from a day where you never questioned what a doc told you. You absolutely cannot do that these days!

      1. I know! My dad is that way – he just takes what the doc prescribes and trusts that they are giving him what he needs. I’m the one looking up his meds and asking questions.

  7. I really think there are lots of auto-immune diseases that benefit from a gluten-free diet. It’s so crazy how drastically the grain has been modified in the past 50 years, and it really shouldn’t be surprising that gluten-related problems are on the rise. I’m glad you got it figured out, for you. I, too, live as a Celiac, although I haven’t been tested. I realized over a weekend that it might/must be the culprit and went GF at that point (3.5+ years ago now). I never could stomach the idea of deliberately harming myself by eating enough gluten for an accurate test.

    1. I was hoping for a positive result because my life insurance company declined me based on my lupus diagnosis… they said if I could prove it was Celiac, then they would review it further. For that reason, I tried. I took one small bite of bread and thought I would eat tiny bits up until the test which was 3 weeks ago. That one bite almost sent me to the ER. Blisters, throat closed up and the Benadryl and inhaler took a long time to do anything. It took me over ten days to recover from it. So no, I won’t be testing anytime soon and will just have to live with the fact that it’s not on paper, yet that is what I have or I am just extremely intolerant of gluten.

  8. Your story is another signal to me that I need to try going gluten free. I am turning 50 this month and have struggled forever to lose the 40 lbs that would put me at a healthy weight. I carry a lot of that weight in my belly and not only can’t stand the way I look in the mirror, I want to start the second half of my life healthy.

    Thanks for sharing your story. And I’m happy that you are feeling better!

    1. Thank you! I have to tell you, I didn’t lose much weight when I went gluten free. Initially, I lost about 15 lbs but I have since gained about 10 of it back. What I did lose, were those weird, overnight weight gains that I could not figure out. I think my body was just so polluted that I retained a ton of water, etc. I think if you are ready to make a change…then start small. Even small changes can add up to be valuable.

  9. Your story is fascinating and amazing Ti – I’m so glad you figured it out! It seems like every time I figure out one health issue another aspect needs solving. Thankfully I have a wonderful internal medicine doctor who listens and takes my suggestions seriously. We’ve been working on a problem for a year (with tendinitis and horrid female problems) that’s related to progesterone deficiency and now am using a hormone cream purchased online because my insurance won’t cover the hugely expensive prescription version. Just crossing my fingers now for the next few months to see if it makes a difference (because birth control pills are the other option, but they have made me very sick in the past). The whole issue of birth control in the news definitely has had my attention because the hormones are a medical necessity for me right now and my insurance doesn’t cover what I need to use.

    I haven’t considered going gluten free because I’ve never noticed anything that might suggest a food related issue, but like you say – it couldn’t hurt to try at some point just to see.

  10. Wow! Kudos for managing to get through all that, and diagnose the problem yourself! I am so glad you are feeling better and back to “normal”!

    Gluten seems to be a problem for a lot of people these days.

    1. I had a minor set back with some food I ate this past week and it reminded me just how fragile my system is. I am all better now though. Just in time for the weekend! Have a good one!

  11. I am simply overwhelmed at everything that was happening to you. I am surprised you had time for anything else…work, family, sleep…with all the doctoring you must have been getting. That kind of schedule can really work against a good state of mind. God bless you. I worked with a woman who had celiac disease, and I can appreciate the effort it takes to abide by the diet.

  12. I’m so glad you wrote about your experience. It’s so important.

    Lesson: we are our own best advocate.

    ps: I didn’t know you taught. Sorry to hear about your throat damage, that’s horrible.

    1. Thanks, Mari. The docs believe that the scar tissue caused my esophagus to twist…which sometimes means that food gets stuck which somehow screwed up my vocal chords. I can talk just fine for short periods of time, but after 10 min I go hoarse and if I keep talking, I lose my voice for a day or so.

    1. I hope your friend gets something out of it. It’s difficult to troubleshoot your own health when you lack the energy to do it!

  13. It is sad in a way that you had to figure this out on your own … but thank God you did. What a nightmare you had. I’ve been hearing more and more about this gluten thing and you see the gluten-free food more and more places. It seems like it is becoming more prevalent or something. I’m glad you finally found the cause of your problems.

    1. I asked my Rheumatologist if it’s just me, or if gluten-sensitivities are on the rise and he said he has seen many more cases in the past three years, especially in young people. I think the reliance on fast food, processed foods and modified foods in general have destroyed our digestive tracts. The good thing, and he agreed, is that much of this can be reversed if caught early. 

  14. I hereby invite you to visit me and we can eat out at all the wonderful Rhode Island restaurants who are knowledgeable about GF (and proper cooking issues) because I know many! Apparently, a nice person campaigned extremely hard and successfully trained the importance and we have many lovely options for dining out. One of my BFFs is extremely gf sensitive and she has educated me. I am always trying to consider her needs when we make food for potluck events. She’s a doll (and I sent her an email to this post so she might stop by and see this *wink,wink*)
    Your story is nightmarish. Glad to know you’ve found life livable again? wow. Another testament to how strong we can be when we half to be. Reading through the list, I was flabbergasted. I just got through a horrible back injury that, now that I’m feeling good, I’m realizing how much pain I really was in but it seems to be just a snowflake compared to your blizzard.
    This also makes me wonder about a few other ‘acquaintenances’ who are suffering interesting “ailments” but how DO you suggest, CHANGE YOUR DIET!? Do you think sometimes it has to come right when they are receptive to hearing it? I wonder… Again, these are only casual infrequent people barely in my life. BUT. I do want to be more patient and compassionate…

    1. I, for one, really do think such a suggestion has to come when the person is ready to hear it. I’ve been trying to tell my sister this, but she’s not ready to hear it yet, sadly.

    2. I would love to come visit you! I live in a big city but the restaurants are slow to pick-up GF menu items. Actually, that’s not true. They put them on the menu and then have no idea how to keep them GF by using clean prep processes and not cross contaminating me in some way. How do you suggest it to someone who might benefit from it? It is hard to suggest it, but if they give it a try and then feel better… then it’s worth it. As much as I want a bagel slathered in cream cheese and topped with Lox, I know that it will ruin me for a week, if not more. The desire to NOT be in pain and to be able to breath outweighs my noshy tendencies. I think the people that are “stuck” in their ways have given up hope, which is sad.

  15. Wow, I can’t believe how much you went through! That must have been so scary. It is also scary that you had to be the one to suggest so much with your care and ultimately figure out how to treat yourself!

    1. My husband still thinks I was being overly dramatic but when you seriously think you are not going to make it at the age of 38, it is a scary thought.

  16. Your story is amazing, Ti and I am so impressed by your tenacity especially in the face of doctors who don’t always listen or do the right thing. I did laugh when you said the doc hit on you! But not when the colonoscopy doc didn’t do a biopsy…c’mon now buddy! Many people don’t understand that you need to listen to your body and be honest and forceful with your doctors. They don’t know everything and they certainly don’t know how we’re feeling unless we tell them.

    I’m sorry to hear your family isn’t very supportive. It would be easier if they were but, of course it doesn’t change how much better you feel not eating gluten. It’s great for your daughter that she has your support with her diet.

    You’re an inspiration, Ti, keep up the great work :o) !

  17. I am totally worn out just hearing about all this. I am so sorry you have had to deal with it. It sounds horrible. You must have been scared to death. You are too young. Now that you have figured it out, hopefully, you will be well.

    I always say you have to be your own doctor. It is so true.

  18. I’ve been gluten free for 12 years after going through similar unexplained health problems for many years and I also solved the problem myself. I do have one of the main Celiac genes and have talked to my kids and other family members about the importance of getting tested, and also the importance of listening to your body and thinking for yourself. Medicine does not have all the answers, particularly when it comes to chronic illness and doctors can be very closed-minded. Great post my blogging friend!

    1. I can’t imagine how hard it must have been 12 years ago. Now, I see products on the shelves and a people seem to know or have at least heard a little bit about it. Back then, you must have felt as if you were forging your own path.

  19. Ti, your posts were so informative. Even if individuals are not suffering the horrible effects you did, I feel like you let all of know that doctors aren’t right all of the time. We know our bodies better than anyone else. Glad u have things under control, and thanks for you informative posts.

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