20,000-24,999 SparkPoints 20,590

Answers and a plan to get my health back

Monday, February 17, 2014

I have not been very active here on SparkPeople lately. Sorry about that. I missed you all and I am back! For the last several months I have been feeling miserable and for the longest I was trying to figure out what was going on.

I was extremely exhausted every day, no matter how much or little sleep I had at night. I even nodded off at work a couple of times. I had several migraines a week. My GI system was acting crazy. I had weird painful patches on my scalp that would appear and disappear unpredictably. My skin was extremely dry and I lost more hair than usual. I was unusually angry, tense, sad, depressed and even lost my appetite (I am usually a "foodie" as I love cooking and eating). I was short of breath a lot faster than usual which (at the time) I thought might just be a result of not exercising as much as I used to, yet this one felt different. Something was not right.

After talking to my Mom, who has Celiac disease, she suggested I should take a self test by checking off my symptoms on a list of common symptoms of Celiac sufferers. Wow. That one hit home. I sure was surprised to find many of my recent ailments on that list. Since my Mom has Celiac disease already, I am at greater risk of developing it myself. Another risk factor is having another autoimmune disease (I already have Hashimoto's disease). Since the beginning of the year, I started tracking my symptoms and whether I ate gluten or not each day. I set up a doctor's appointment to get a blood test for Celiac done as well as a large blood panel. Knowing that a Celiac blood test could come back with a false negative after cutting out gluten from one's diet, I kept consciously eating gluten up until the day of the blood test.

While I was waiting on the results, I kept eating gluten at first, in case a biopsy was needed. However, I was so miserable the weekend before last with one of the worst and longest migraines I have ever experienced that I decided to go gluten free starting that Sunday up until Tuesday night and I soon felt better. The migraine and my GI issues subsided. Knowing I would get my test results on Wednesday, I did go on a "gluten splurge" on Tuesday night with my favorite made-from-scratch homemade pizza (I will miss you, baby!). Well, let me say I paid for that on Wednesday morning...

Eventually I got my test results on Wednesday afternoon and the good news is that the Celiac test came back negative/non-elevated. I am still at risk of developing Celiac, but at this point I do not have it. That is great news. So for now, it looks like I am gluten intolerant and I am cutting it out for the next six months (and possibly forever) along with tracking my food meticulously to see if there is anything else I might react to. The big surprise that came with my blood panel was that I was severely iron deficient/anemic and that explains some of the above symptoms as well (including the unusual shortness of breath). I immediately started taking an iron supplement and got some extra rest the last few days. I am starting to feel a little better. Yay!

Here comes some female stuff, possibly TMI for some. You have been warned. ;-)
My last blood panel was in September last year and it showed all my values to be perfect with iron being just a tiny bit low and my progesterone levels being postmenopausal. I increased my dark leafy greens intake (I am not a big meat eater) and I am already taking a multivitamin which also has iron in it. That should have taken care of it, or so I thought. Well, it apparently did not. I have to add that my menstrual cycle has been crazy for years (since my miscarriage in 2007 to be exact). First, I did not bleed at all, then I started spotting and/or having minimal flow on a daily basis. Several doctors had previously suggested I take birth control pills to "reset" my cycle, but I did not want that in hopes of at some point becoming pregnant again. Well, that has not happened since 2007 and with my progesterone levels being postmenopausal (I am 27!), I eventually agreed to trying to "reset" my hormones with the means of birth control pills. I never stopped spotting, but I did have two very heavy cycles during which I lost more blood than usual. Looking back that probably was what depleted my iron levels. Especially considering that soon after that second very heavy cycle I started feeling exhausted and extremely tired for (at the time) no apparent reason. In addition, I continued to have (almost) regular cycles with spotting in between. Having almost regular cycles is a good sign and I really hope constant spotting will stop soon.

I will be taking my iron supplement daily and will keep getting my levels checked. I will also eat more yogurt again and also take probiotics which will hopefully get my gut back in order (I am still waiting for them to come in the mail, but they should get here soon). Through that and my diet change(s), I hope to be back to my old self soon (I sure miss her!).

At times I was so miserable that all I did was sleep as soon as I got home in the evenings and most of the weekends as well. I did not exercise much. This I am changing now. I need my workouts. I am going to a Zumba class once a week (Mondays) –I already went twice– and I am increasingly walking in the morning between dropping my son off at school and going to work. Eventually I want to go back to the 5K Your Way program and actually run a 5K this year.
Share This Post With Others
Member Comments About This Blog Post
    Thank you Mom and thank you Amanda. I have been completely GF since Sunday and am also taking iron supplements and probiotics now. No migraines so far which is awesome. I worked out Monday night doing interval training (walk/run) and I was miserable on Tuesday. I was shaky, dizzy, nauseous, had a racing heartbeat at times, and was beyond exhausted – all anemia related I am sure. I am assuming this was m body's response to a workout to strenuous to handle at this point. emoticon For now I will slow down my workouts to walking and light strength training for now. I will still go to Zumba, which can be pretty intense, but I will be careful and modify some of the steps as to not overdo it.

    Amanda, your discovery about how your iron levels changed after removing gluten is very interesting. I hope you can continue to regulate them through your diet. I totally understand you not wanting to intentionally eat gluten to get checked for Celiac. I am glad I can now be completely free of it and don't have to keep eating it. Maybe we can swap some recipes and product recommendations down the road. I am happy to have found some edible whole grain (brown rice) pasta so far (through my Mom, thanks!). emoticon
    1580 days ago

    Comment edited on: 2/19/2014 2:41:58 PM
    Well, celiac or not, you pretty much hit the nail on the head with all those symptoms! Wow it was like reading about my own symptoms, right down to the weird painful sores that would move around the scalp! When mine got really bad, I started itching around my eyes due to losing multiple eyelashes too. Weird, huh? Removing the gluten really helped, getting rid of all the skin issues, and insomnia, and headaches, and a lot of the pain. Even better though - I have the opposite issue with iron. I have a family genetic disorder that leads me to have dangerously high levels of iron. Many people in my family are forced to go through monthly blood-letting (haha) in-office, and we can't even do it through donating blood because the blood bank won't take our blood because of the genetic disorder. I haven't gotten full-blown hemachromatosis yet, but I have several of the genetic risk factors, and over the last two years, my blood iron has gotten to where it's been slightly too high. I've tried to correct this through diet - not eating a lot of iron - but it's stayed elevated. Now, after six months going without gluten, I had my blood tested right before my surgery in January, and the levels are normal for the first time in over two years. Kinda makes you wonder what sort of effect gluten-intolerance has on blood iron, too.

    I've not been diagnosed or tested for Celiac, because frankly I'm not willing to pay for eating gluten in order to take the test! There are very few foods that I miss that I haven't found decent substitutes for (I spent the last two weeks slowly going through a box of GF glazed donuts, haha), and they aren't worth all the pain and problems that come after. I hope now that you have all these answers, you will feel so much better Heidi!
    1582 days ago
    Sweetheart emoticon ,
    i will be very happy when u finally feel better - never liked to see u suffering (for so long since Teenage years with the migraine).
    I know how hard it is to miss favorite foods - but once u find out how much better u feel without those fav foods, u will not miss it any more emoticon .
    Try to find new fav foods, that helps emotionally too - it sure helped me emoticon .

    always lots of Love and Hugs from your MOM emoticon
    1582 days ago

    Comment edited on: 2/17/2014 11:41:25 AM
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.