Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Feeling Pretty Sad About The Whole Gluten-Free Thing Right Now

GF in BC

By GF in BC
in Coping with Celiac Disease

Recommended Posts

GF in BC Newbie
GF in BC
Posted

I haven't been on the site for a while, but I needed a place to post where people understand, so here I am.

 

I just received the results of my most recent blood work-up. I now go every six months to monitor my iron levels. This time I also requested my B12 be checked.

 

In June, my ferritin level sat at 32, down from six months prior (33). I'e been struggling to eat more meat and to find a supplement that didn't hurt me (and they've all been gluten-free). My GP wants me to take 300mg of iron daily and I just can't find a way to do it.

 

Today my number is 25. I don't understand. I've eaten strictly (and I mean strictly!) gluten-free since finding out about this whole issue last December. I also just discovered three weeks ago that I'm allergic to dairy. Not lactose intolerant....allergic. No more Greek yogurt for a while....if ever. (I was at the grocery store last weekend and found myself wandering aimlessly around, choking back tears. I felt like a little kid: "What CAN I eat??") :blink:

 

My B12 has also been flagged as way too low. Not sure if it's lower than typical as I have to pay for this particular test so it hadn't been done before.

 

My thyroid seems fine....and I have no symptoms of it being an issue. I know that doesn't mean anything after reading a few posts here.

 

Not sure what I expect from this post....I supposed I needed a small pity-party :( It's been a VERY difficult year adjusting and just when I thought I had it figured out....bam.

 

Thanks for reading my whining and I promise to buck up and suck it up and all that.....but not today. :wacko:

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

(hugs)

You might be doing everything right but just be one of the unlucky celiacs who take longer than average to get better. Technically half of us take longer than average to heal, so you are in good company. ;)

 

For B12, a sublingual vitamin is probably the way to go.  For iron, are you eating meats?  I know animal heme iron is easier to absorb than iron from plants.  This could start coming up anytime in the next year or so without a lot of help, but a supplement might speed things along.

 

Sorry to hear about the dairy.  :(  I find coconut products can be a good substitute (especially after you've lost your taste for dairy) but I know it's not really the same thing.  Hang in there.

GF in BC Newbie
GF in BC
Posted
  • Author

Thank you for your response....most appreciated. 

 

I'm going out to buy the sublingual B12 tomorrow as you are the second person today who has suggested this.

 

I've ramped up my meat eating.....I was a vegetarian for years and years, and my meat eating in the past decade was limited to maybe a dozen times a year or less. I'm trying to eat it at least once a week but it's not the first thing I think of when I'm planning meals - I'm sure that will come eventually.

 

I am so sad about the dairy. I ate Greek yogurt every single day for the past few years. It's a good way to get protein and calcium. I'm attempting to try goat's yogurt but that's an acquired taste! I'm also trying almond yogurt. Not overly impressed. Hence the almost-tears while shopping!  I'll give the coconut a try as well.....never even thought about that!

I have a serious sensitivity to xanthan/guar/locust bean gums.....makes it difficult to find food that will work.  I'm a dedicated label reader now, that's for sure. :)

 

Again, thank you for posting.

nvsmom Community Regular
nvsmom
Posted

If you try the coconut yogurt just remind yourself that it is not really yogurt.  The texture is quite different than dairy yogurt.  It would be like comparing quinoa to rice - they are similar but very different at the same time.  Basically, I mean that you should expect it to taste different, and then maybe it will seem like an okay substitute.  KWIM?

 

I'm sure others will have tips for you.  Anemia and low iron and B12 are pretty common symptoms among celiacs.  Best wishes.  :)

skullgrl Rookie
skullgrl
Posted

I've had B12 deficiency/low iron for years. I just give myself B12 injections now. They work great. You may be able to find lactose free yogurts. 

 

Edit: Oops, pardon the last sentence. I didn't realize it was an allergy! My apologies.

w8in4dave Community Regular
w8in4dave
Posted

Have you tried smoothies? There is a ton of super healthy smoothies on line. They pack a bunch of vitamins. Your allergy to lactose wow I do feel for you. Intolerance is one thing but allergy is something you probably will never get it back. I fell the same way you do sometimes. But then after wards I pull my big girl panties up and get over it. Just eat what I have to eat. Look on line and find vegetables and fruit that have the vitamins you need. See if you can put them in a smoothie or just eat them every day. Or try to anyway. 

Shell fish, Beef liver and fish high in b 12. Not that a vegetarian wants to hear that. 

 

Spinach and dark leafy greens have alot of iron That should make you happy! And you can put those in a smoothie and get alot of Iron. Good luck !! 

plumbago Experienced
plumbago
Posted

Hi,

 

It would be helpful to know what your B12 level was, and what is the normal B12 range for the lab your blood was processed at. Same with the normal range for iron/ferritin. I used to give myself B12 shots. Easy to do. Also, you can do supplements for iron. I agree that animals have more heme available to us than veggies, but the veggies are so good for us!

 

Plumbago

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GF in BC Newbie
GF in BC
Posted
  • Author

Hi,

 

It would be helpful to know what your B12 level was, and what is the normal B12 range for the lab your blood was processed at. Same with the normal range for iron/ferritin. I used to give myself B12 shots. Easy to do. Also, you can do supplements for iron. I agree that animals have more heme available to us than veggies, but the veggies are so good for us!

 

Plumbago

My B12 is at 110 and the reference is 150-220 as low and up to 698 as normal.    It's pmol/L - whatever that means ;)

 

For ferritin, anything between 15-49 is considered iron deficiency.  Normal is anything over 100.

 

I cannot tolerate supplements. I've tried about a half dozen types, including heme iron in pill form, and liquid that is meant for babies. Not sure what comes next.  I'm eating so much more meat than I ever have and I think that is why the further lowering of my number is confusing me....

I'm sure it will eventually get sorted out, but I definitely needed to whine! I felt better right away! :D

BethM55 Enthusiast
BethM55
Posted

I'm so sorry all this is coming down on you at once.  It's fine to have a pity party!  Keeping all that emotion in isn't good for you, as long as you are able to move forward.  Sounds like you are doing that.  

 

If you are a make things at home type of person, these links may be useful for you.  I hope you feel better.

 

 

Open Original Shared Link

 

Open Original Shared Link

plumbago Experienced
plumbago
Posted

It doesn't sound like you want much more advice, so this will be my last  - are you concerned about your iron levels? How's your hemoglobin? What does your doc say - at what point should you move to injections? that sort of thing. You can get iron injections as well as B12 injections. Has your doctor wanted to rule out ulcers as a source of blood loss?

 

Good luck, and of course feel free to whine.

Azenka Newbie
Azenka
Posted

Liver!!  Super cheap, super full of metals. If you hate the taste, caramelized onions and bacon will balance out the taste.

 

Ironized yeast if you can find it. Helped my mom years ago, and she cannot tolerate supplements also. But, uh, she can't find ironized yeast either.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Insomnia help

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess.
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Insomnia help

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety. I had awful anxiety at diagnosis, and that feeling of doom that you describe. My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me. I then got a phobia...
    3. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Insomnia help

      Hi @trents thanks so much for the insights this helps alot. These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep...
    4. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Insomnia help

      When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be...
    5. hjayne19
      - hjayne19 posted a topic in Traveling with Celiac Disease
      0

      Mallorca Guide

      Hi celiac community. Reaching out for some help. I am traveling to Mallorca in May for a cycling trip and would like some recommendations on gluten free safe eats and if there are things in the stores to buy. Let me know what works
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,936
    • Most Online (within 30 mins)
      7,748
    Zaneflying
    Newest Member
    Zaneflying
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Insomnia help

      By trents · Posted

      One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 
    • cristiana
      Insomnia help

      By cristiana · Posted

      Hi @hjayne19 It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.   In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game. As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another: In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.    I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy! Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.   Anyway, sorry for the length of this post.  I hope something might be of help. Cristiana  
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @trents thanks so much for the insights this helps alot.    These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months Magnesium: 0.80 mmol/L Vitamin B12: 1021 Vitamin D (25-OH): 102.8 I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 
    • trents
      Insomnia help

      By trents · Posted

      When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be much more important than we ever realized. In many ways, it is a "master vitamin". And in the modern world where we spend much more time indoors than our ancestors did, we often don't get enough of it, especially if we live in northern latitudes. And it's also true that "normal" levels may not be the same as optimum levels.  Ferritin is an iron storage protein. The body can rob from storage in order to maintain immediate blood levels of iron so, yes, ferritin can take longer to rebuild than hemoglobin counts. Your ferritin levels are low end of normal.
    • hjayne19
      Mallorca Guide

      By hjayne19 · Posted

      Hi celiac community. Reaching out for some help. I am traveling to Mallorca in May for a cycling trip and would like some recommendations on gluten free safe eats and if there are things in the stores to buy. Let me know what works 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.