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

Recommended Posts

GF in BC Newbie

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

(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

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

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

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748

    Terra33
    Newest Member
    Terra33
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.