Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Iron Supplements


Mother of Jibril

Recommended Posts

Mother of Jibril Enthusiast

I've been having some problems with fatigue and dizziness for the last few weeks. I really noticed it on Wednesday... I took a group of students on a tour of the art museum, and we were standing around for about an hour. I felt SO tired! Not tired like I needed to sleep... tired like I needed to sit down or lay down. I haven't felt like that since I was pregnant (and I'm definitely not pregnant right now). I don't feel depressed... just tired. And sometimes dizzy, especially when I wake up in the morning.

So... yesterday I went to a walk-in clinic and asked if they could test my ferritin and B-12. Gotta love doctors <_< This one said, "I don't think we need to test your iron." Let's check your thyroid hormones (I do have hypothyroidism). Whatever. This morning I found out that the results were normal (TSH is 1.1).

What now??!!! I'm still tired :huh: I bought some sublingual B-12 to try, but what about the ferritin? Do I need to keep hounding doctors until I find one that's willing to test it (or come up with some other explanation for the fatigue/dizziness)? I've always been told that you should only take iron supplements under a doctor's supervision. Is that true? I guess I could up my intake of foods with iron... but I'm already eating quite a lot! Meat, eggs, leafy greens... grrrr. My diet is so restricted and I'm getting tired of having to plan everything SO carefully. I've been borderline anemic for years. Sometimes below the line, sometimes a little bit above (I've been unable to donate blood several times). So clearly, I'm just one more "emotional" woman looking for attention. :blink:

Argh!! I have some other problems going on right now... lump in my lymph node, had a severe allergic reaction last week (still trying to figure out why)... so this is kind of taking a back seat. That's why I went to the walk-in clinic instead of my regular doctor. The bad thing is that there's no follow up care... <_<


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



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

Most multivitamins contain all of the iron you need to keep your levels normals. However if you are more than slightly anemic eating red meat or taking a multivitamin won't sufficiently increase your iron levels so you need a temporary supplement (these are usually prescription). Most doctors like to see Ferritin levels at least 80. I think iron should be taken under a doctors supervision as having too much iron can be just as dangerous as not having enough. A good doctor will check your iron stores every 3-4 weeks until they return to normal and stay that way for a few months. I think it's worth finding a doctor who will test your iron levels if you 've been anemic in the past.

ravenwoodglass Mentor

It is true that iron is not something you want to oversupplement as it can be toxic and build up in organs. If you are not postmenapausal then taking a vitamin with iron is not going to hurt you IMHO. If you are postmenapausal someone I always found helpful with testing for this was my OB/GYN. If your not postmenapausal it is not uncommon for a woman to be deficient or low and they test for it all the time.

curiousgeorge Rookie

You need to get your ferritin tested but you already know that.

My ferritin has been chronically low (4 to 6 range). I have taken iron supps for the last 5 years pretty much all the time and it does very little to change my levels. The most its been is 20 which was the most recent, preinjection level . I ended up having iron injections because doc said my gut still isn't absorbing it even after 9 months on gluten-free diet. Now, my friend, same thing, her ferritin was 6. Her doc didn't tell her to take iron sups, but I did, and when she went back and said she had been taking them, he looked at her level and said yeah that is a good idea. She has now switched to my doc, and he retested her ferritin. After three months on the same sups as me, her ferritin was 167. That is the difference of someone who absorbs it and someone who doesn't. The sups can raise it that much that fast which is awsome but also potentially dangerous.

I had my cbc done by a walk in doc too, and I asked him the same thing and he said your ferritin must be fine bc your rbc was fine. Um yah, no, it was not when retested a month later. I know I had ferritin issues since I was preg with my 13 year old. It is my biggest celiac symptom.

If your hypo too you likely know this already, but you need to have a good ferritin level for the conversion of t4 to t3.

Go and insist on having your ferritin checked! I can't believe how much less fatigued I am after the iron injections. Its wonderful.

Mother of Jibril Enthusiast
If your not postmenapausal it is not uncommon for a woman to be deficient or low and they test for it all the time.

I haven't hit menopause yet... and even though I've tested borderline anemic many times, NOBODY has ever checked my ferritin level. :angry:

My ferritin has been chronically low (4 to 6 range). I have taken iron supps for the last 5 years pretty much all the time and it does very little to change my levels. The most its been is 20 which was the most recent, preinjection level . I ended up having iron injections because doc said my gut still isn't absorbing it even after 9 months on gluten-free diet. Now, my friend, same thing, her ferritin was 6. Her doc didn't tell her to take iron sups, but I did, and when she went back and said she had been taking them, he looked at her level and said yeah that is a good idea. She has now switched to my doc, and he retested her ferritin. After three months on the same sups as me, her ferritin was 167. That is the difference of someone who absorbs it and someone who doesn't. The sups can raise it that much that fast which is awsome but also potentially dangerous.

If your hypo too you likely know this already, but you need to have a good ferritin level for the conversion of t4 to t3.

Thanks for the comparison between you and your friend! I wish I could get a referral to a good PCP... one that would actually TEST FOR THINGS instead of guessing.

Good note about the T4 to T3 conversion. The doctor I saw yesterday was pretty clueless about that too. She tested my TSH and free T4, but not free T3. So... I'm absorbing the T4 (high normal), but am I converting it to T3??? Why test when we can guess? What a fun game! :lol::blink::ph34r:

curiousgeorge Rookie

Are you taking snythroid or are you taking dessicated?

I always thought ferritin was a pretty basic test. I mean sheesh, your ultimately paying for the test right?

I know what you mean about them taking a blind stab at things. My old doc was really good at it. Scary thing is he was a prof at the medical school. He did test my ferritin but assumed it was low from my periods and said if it wasn't that then he would have to do a coloscopy because colon cancer can do that too. Asked if my periods were heavy, yes, well here is a drug to calm them down. Didn't look at antyhing other than my tsh. You have heartburn, here is a drug for that. Your ferritin isn't coming up with iron pills you must be non compliant. He never looked at the big picture which pointed straight at celiac. It still really makes me mad.

chatycady Explorer

Could you have developed hypoglycemia? Dizziness and fatigue are a big part of it. Also quite common with celiacs. Dizzie? Black outs? Ataxia? Dark circles under your eyes?

Just a thought.


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

I'm taking 100mcg of Synthroid. I'm not really keen to try Armour because I stopped eating pork products fifteen years ago for religious reasons. I'd do it if I had no other choice... my preference would be to try synthetic T3. We'll see what the endocrinologist says next month.

I am the one paying for the test! And I don't think it's very expensive. I wish the person I saw would have just agreed to test my thyroid levels AND ferritin. How hard is that?

Unfortunately, I think your experience is all too common. And why do so many doctors just think, well... it must be your periods... I don't need to check for anything else. I was having really heavy, long, irregular, painful periods by the time I was in my mid-20s. When I brought this up at my annual exams, the NP said her only concern would be anemia... eat more foods with iron. What about endometriosis? What about hypothyroidism? I think it's a miracle that I have any living children! I knew there were a lot of health problems in my family and I was diligent about getting annual exams... but you have to have a doctor on the other end who's willing to investigate <_<

Mother of Jibril Enthusiast
Could you have developed hypoglycemia? Dizziness and fatigue are a big part of it. Also quite common with celiacs. Dizzie? Black outs? Ataxia? Dark circles under your eyes?

Just a thought.

Well that's a good question too. My mom has diabetes. I haven't fainted in a while (I did as a teenager)... but I always tested negative for gestational diabetes. It's definitely something to ask the endocrinologist about. I notice the dizziness most often when I get out of bed. It was really bad while I was pregnant! I could hardly make it to the bathroom without bumping into the furniture or the doorway. I always thought it was a blood pressure thing.

curiousgeorge Rookie

My thryroid was SO messed up after my oldest was born, when I went to the endorchronologist when he was 4 months old, she asked me who's baby it was. She said it was a miracle that I even got pregnant with the numbers I had and that I had been messed up for years with the size of my thyroid.

I took synthroid for 12 years. Its as good as useless as far as I'm concerned and I suspect synthetic t3 is likely not much better. The thing that is really great about armour is its all the thryoid hormones, t1-4 and calcitronin and likley even yet identified hormones. Calcitronin is responsible for calcium in your body and studies have been found that people who take armour are less prone to osteoporosis. Synthetic t4 makes you more prone to osteoporosis. Expecting T4 onlly to do all the important things your thyroid is suppose to produce is just not realistic. If your thyroid isn't making t4 then its not likely making all the other hormones either yet doctors tell us that we'll be fine on t4 only. I know I felt better from the moment I took my frist armour pill. It was truley amazing. I know jewish law allows the use of porcine based medicines like armour because of the benefit.

Mother of Jibril Enthusiast

Well... a bit of good news. I finally found someone (my PCP's office) to test my ferritin. I should have the results by Tuesday.

I went in this morning. The nurse was polite, but seemed to think I was a bit crazy. She asked again what I wanted to test (ferritin!) and insisted that we do a CBC too. Whatever. She said, "Well, I guess some people do have a hard time storing iron!" :ph34r:

I found a medical article online that I'm going to print off... in a study involving women of childbearing age, 20% had low ferritin but only 5% were anemic. The ones who had a level under 50 felt better taking iron supplements.

Open Original Shared Link

Hopefully, this is the solution. If not, then at least I've ruled out my TSH, T4, ferritin, and certain types of anemia as explanations for the fatigue and dizziness! I already had a bunch of appointments scheduled for the next six weeks... allergist, ENT (lymph node problem), endocrinologist, rheumatologist, and a gynecologist who's supposed to be very good. At least one of them should be able to come up with some ideas.

Interesting about the calcitonin. My last CMP (in October) showed low serum calcium. I assumed it was because I had stopped eating dairy products and just wasn't taking enough calcium, so I increased my supplements and added some magnesium.

curiousgeorge Rookie

Yippie! I'm glad you got the ferritin test. I'm going to bet its low. I know I can feel it when its low.

Keep me posted :)

Mother of Jibril Enthusiast

So... I got the results on my ferritin this morning. 47. Could be better, but not bad.

What now??? I'm still tired :( I was really hoping I could find a simple answer.

curiousgeorge Rookie

It should be about 80 but yeah, I don't think that is low enough for you to feel horrid.

I'm going to PM you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,926
    • Most Online (within 30 mins)
      7,748

    Ctw9981
    Newest Member
    Ctw9981
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
×
×
  • Create New...