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Ferritin Rising Since Going Gluten-Free!
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Hi folks,

I am so happy! Went on the gluten-free diet in October (to feel better like everyone talks about) and was that ever an eye opener! I honestly had no idea that this could be my problem and really knew nothing about Celiac AT ALL!

My labs just came back since going gluten-free (albeit that is a struggle all it's own) and my Ferritin and Hemoglobin is rising with NO iron supplementation! It's a miracle! My hematologist of three years (who has been pressing me about my GI doc missing something) just called THRILLED. When I told him I was not taking supplements but had merely gone gluten-free, he said, "I hear you, I hear you. Happy New Year dear!".

This journey has been so long. I've spent so many years sick and, no, I don't have a crystal ball but just to THINK this is the answer, well, I am doing cartwheels (in my head because, Lord knows I don't feel well enough for the real ones YET). But I finally have hope.

I'm sure I'll have more to share as the days go by but thank you for your support during this process so far. It is quite the crazy journey at the beginning (WOW what a life changer) but I am so looking forward to continuing the healing process. Thank God for the "fad diet"! It ain't a fad to me. It's a gift.

Sorry for blurting but today is a good day :)

Cali

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I am happy for you. I ran out of Ferritin supplements and I feel it. Hopefully my levels will be headed up again soon.

I think I have 30 years of damage? How about you?

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That's fantastic!! Isn't it great when the numbers reflect how you're feeling?!

Laura

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It's been a roller coaster ride because I have been getting glutened since the start of the diet (about every week to 10 days) so this came as a big surprise. Of course, the Ferritin has quite a ways to go and my D is in the dirt (which also causes fatigue). It is the first time my Ferritin level climbed without supplementation which, to me, speaks volumes. My body is working hard to heal (probably has worked like crazy to fight off the invaders) and so I still just want to sleep all the time (except when it's bedtime). The longest stretch of being gluten-free has been 15 days and that was the first time out. I did take Floravital liquid iron in December but only five days worth. Maybe that's an ultra good vitamin!

I think my body has a lot more healing to do and the numbers might precede my energy level. HA

LadySaved, someone posted a childhood picture of me on Facebook a few years back which horrified me. I was 11-years old and very skeletal looking. I'm holding a roll. It was the first thing in this process that made me think, "holy crow, something has been going on with me for longer than I thought"! Add a few years to that 30 and the last 8 have been a nightmare. Someone here posted that every year being gluten-free greatly decreases the chance of lymphoma and the other diseases that come from this. Having started the medical musical chairs in '05, I am hopeful to turn this slide down the road of unwell, around and actually have a life.

My hematologist still wants me to keep my appointment with the urologist for a cystoscope :-Q but I guess it's prudent to make sure everything is checked out. It's not over yet but this news is very motivating and confirming.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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