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

Anemia And Other Deficiencies


ShayFL

Recommended Posts

Ursa Major Collaborator
Thank you for answering my questions. When I went back in 97 for my second biopsy, my villi had healed (was healing); and I've remained gluten-free, so I'm hoping I'm still healed... Now, even with my villi healed, I've gone from 0 ferritin to only around 21 (as my high). I guess something else is amiss (which I'm investigating and (sigh) working on). I'm thinking it's the enlarged RBC's (low RBC); but why I have that condition is what I'm trying to figure out.

I too found, like others here, that iron supplements are constipating - which I don't need! I brought up iron injections to my doctor before, and all he said was it gives you a sore... bum. So, I didn't detect any urgency, or enthusiam, about it from him. I can't imagine having such low iron for over a decade, or probably more, is something to take lightly, though. I'm considering injections again, though. Thanks again; and this is a great topic. It's surprising how many of us have chronic low iron.

Oh, I'm not sure how recent your message is about your granddaughter; but I hope she's doing ok!

I had a hysterectomy in 2002 to stop me having my period, because I'd have it for ten days each time, with only 2 weeks in between, and heavy bleeding (very close to hemorrhaging each time). My doctor felt that was the cause of my low ferritin. And it was, but I believe now that it was a symptom of celiac disease.

Anyway, it took six months of still getting iron injections every week before my iron stayed up at 40, and we stopped the injections. After that it went up by one count a month, meaning it took 65 weeks before it got up to the perfect count of 105. Maybe it would have been faster if I would have been absorbing iron better, I don't know.

But if your iron climbs slowly, but steady, that is good. You might consider giving yourself a boost by having an injection to go up to maybe 40. You would feel much better then, and maybe it will stay there and slowly go up.


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



Celiac.com Sponsor (A8-M):



loraleena Contributor

I just got mine checked for the first time. I demanded it after doing some reading. My ferritin was 14. I have read that is should be above 6o or even 80. My regualar doc said it was a little low, but not something to worry about since my hematocrit was low normal. My holistic doc saw it and said you are anemic!!! She had me start a supplement. It is only 18 mg. What is the amount that I should be taking? This seems low. I was told to try dessicated liver pills. Anyone trying these. I am currently taking one that does not cause constipation ( a big concern of mine). Are you anemic if ferritin is low but other tests are in the normal range?

ShayFL Enthusiast

I am taking Solgar's Gentle Iron. It did help get my levels up from 11 to 22 after a few months of taking only 2 pills a day (50 mg iron). But I stopped taking them. I am now taking them again because my last lab said Ferritin 19....so it dropped. This time I am going to shoot for 100 - 150 mg a day and retest in 2 months. Some people take 180 a day with no problems.

It does not constipate me or irritate my stomach.

Take with vitamin C for better absorption. :)

Lizz7711 Apprentice

I'm wondering how many of you with such low ferritin have been tested for hypothyroid issues? There's a big connection there, so might be worth exploring if you haven't already. A TSH over even 1.0 WITH symptoms, can signify hypothyroid, so if you have the symptoms, but the doc says your labs are fine, don't just accept it. Go to www.stopthethyroidmadness.com for more info on this topic.

If that's all being addressed, and you still have malabsorption, then maybe check into more aggressive leaky gut healing and intestinal healing, i.e. enzymes, probiotics, antioxidants, etc. as well as figuring out if any other foods are causing you problems.

I take ferrous bis-glycinate, about 50mg per day, and have no stomach or constipation problems at all, and my ferritin rose from 16 to 29 in under 3 months.

good luck to all of you :)

Guest hightop girl

to answer the Hypothyroid question... I had grave's disease and my thyroid radiated 21 years ago. I take synthroid and my TSH levels show hyperthroid problems, but my free t4 test is in the normal range. My doc says that can happen with inflammation or poor absorption.

Di-gfree Apprentice
I'm wondering how many of you with such low ferritin have been tested for hypothyroid issues? There's a big connection there, so might be worth exploring if you haven't already. A TSH over even 1.0 WITH symptoms, can signify hypothyroid, so if you have the symptoms, but the doc says your labs are fine, don't just accept it. Go to www.stopthethyroidmadness.com for more info on this topic.

If that's all being addressed, and you still have malabsorption, then maybe check into more aggressive leaky gut healing and intestinal healing, i.e. enzymes, probiotics, antioxidants, etc. as well as figuring out if any other foods are causing you problems.

I take ferrous bis-glycinate, about 50mg per day, and have no stomach or constipation problems at all, and my ferritin rose from 16 to 29 in under 3 months.

good luck to all of you :)

I was recently diagnosed with Hashimoto's. The iron/hypothyroid connection is confusing to me. I just read how low iron can cause intolerance to thyroid medication (both of which are a problem for me right now). So, it's frustrating trying to fix iron problem when you can't fix the hypothyroid problem, and vice versa (if that makes any sense!). It's a vicious cycle.

mftnchn Explorer

Thanks for all the information on this thread. I just had my ferritin checked and it was just under 31. My doctor's brief email message (I'm overseas) said it is ok if above 30, he doesn't want it too high. I have a phone consult coming up so will ask for more information.

I want to comment on how important getting the vitamin D levels checked, I've been recently researching this. There is more and more information about the connection with autoimmune disease. Also be sure that the lab is reliable, the specimen needs to be frozen and handled appropriately to get reliable results.

Also remember that just a few minutes of sun can bring your levels up fast. So I'd be careful about doubling your current supplement in the summer unless you are avoiding sun or checking your levels frequently.

On the other hand, there is the absorption issue, which is major for me too. I think we need to track more than just a few levels. My suspicion is that if iron isn't staying up, something else might also be going on.


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Open Original Shared Link

Here's a link about Vitamin D and autoimmune disease.

Open Original Shared Link

And another about the importance of calcium as well.

Sherry

Joni63 Collaborator

You know, I've just read this whole thread again and I'm totally amazed at how differently doctors handle low vitamin levels. Many do nothing, and the ones who do prescribe supplements do so at such a wide variety of doses. And some say the low ranges are just fine.

I just find it is yet another negative to our medical system which is so lacking in somthing so basic as nutrition. (had to vent, sorry)

I'm wondering about the thyroid issues and iron myself. My TSH was 2.4 and I've felt like something is still off in my system after the gluten-free diet. Many things have resolved, but sleep issues persist and tinnitus started after going gluten-free. I just don't think that is a coincidence. I was taking melatonin and have only been waking up once in the night most nights which is a huge improvement. I just found the time release version and have found that I only wake up if I have to go to the bathroom, which is still once a night.

Liker Ursa, I have always had heavy menstrual cycles so I'm sure that contributes to my low iron. I also don't eat a lot of red meats. I've read that heavy exercise will deplete ferritin levels and many runners have that problem. I was running 2 miles 3 to 5 days a week, lifting weight and doing yoga/pilates at the time my iron was tested.

I'm still waiting on my updated labwork after high doses of supplements, but I will be sure and post the results for anyone who is curious.

My ND tol me when I went to her that she would be putting me on higher doses than any regular MD and that it was ok because we would be re-checking all those levels in a month. Iron can be tricky and dangerous if the levels are high so it is something to supplement only under medical supervision. In most of the cases posted, the levels are so low and rise so slowly that it will take forever to them to get into the middle range.

I'm glad we can all learn from each others experiences.

ShayFL Enthusiast

TSH of 2.4 is too high for most people. My MD would treat you with that TSH if you have symptoms. After treatment has started, she does not even look at the TSH. In my case, I get a thyroid panel done now and again and last time, my TSH was .08 Most doctors would freak at this and drastically reduce your meds. My doctor asked a bunch of questions and noted I was still hypo and "upped" my Rx. And I got better.

I am hoping over time that my thyroid will heal on gluten-free diet and that I can reduce the meds.....

sumichls Newbie
You know that you may only need ONE SINGLE injection to bring the ferritin up to an acceptable level? It will go into your butt, so not too bad.

I think having one single little poke shouldn't be too bad, right? If then you can manage to keep it there, and slowly bring it up higher from where it will go (probably around 25 or 30), you would likely feel much more energetic as a result.

I have been receiving iron infusions twice a year since 2002 and haven't noticed any bad side effects from them. The only downside is the infusion takes up most of the day to receive it and it takes awhile for my iron to come up enough to really feel a difference.

My iron was 2.7 right before my last infusion the first of May and now it is at 11, which is a big improvement for me.

Sue

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748

    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.