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

Anemia And Other Deficiencies

ShayFL

By ShayFL
in Related Issues & Disorders

Recommended Posts

Ursa Major Collaborator
Ursa Major
Posted
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
loraleena
Posted

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
ShayFL
Posted
  • Author

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
Lizz7711
Posted

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
Guest hightop girl
Posted

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
Di-gfree
Posted
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
mftnchn
Posted

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
mftnchn
Posted

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
Joni63
Posted

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
ShayFL
Posted
  • Author

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
sumichls
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,455
    • Most Online (within 30 mins)
      7,748
    Zpayt
    Newest Member
    Zpayt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
    • julie falco
      NEED TO READ ALL LABELS (FRONT & BACK)

      By julie falco · Posted

      BRAND NAME: NOT BURGER PLANT-BASED PATTIES  A product I came across labeled gluten-free bought it when I got home I read the back ingredients further to notice that it says gluten with a line going through it u will see in the attached pics.     The label says down below that it is processed in a facility that also processes "WHEAT".  I tried to put this on the Gov. website as false advertisement but couldn't do it.  Maybe on here at least the word can get out to others not to purchase anything gluten-free without throughly reading the whole label....It won't let me upload 2 pics.  says to contact manager.   The products name is Not Burger    INGREDIENTS: Water, Pea Protein, Coconut Oil, Sunflower Oil, Natural Flavors, Bamboo Fiber, Less than 2% of: Methylcellulose, Dried Yeast, Rice Protein, Salt, Cocoa Powder Processed with Alkali, Psyllium Husk, Potato Fiber, Red Beet Juice Powder (color), Chia Protein Concentrate, Spinach Powder.   Manufactured in a facility that also processes wheat and soy.          MANUFACTURED FOR: The NotCompany, Inc, 438    Treat Avenue, San Francisco, CA 94110.
    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
    • knitty kitty
      Getting rid of the belly bloat

      By knitty kitty · Posted

      Welcome to the forum, @Karen Chakerian, We need more information, please.   What homeopathic remedies or medications are you taking now?  Do you still have the blood pressure and other symptoms?  What is included in your diet currently?  Dairy? Oats?  Processed gluten free foods?  Vegetarian?  Other food allergies?  Do you take vitamins?  When gluten is removed from the diet, the body stops making the anti-gluten antibodies that are usually measured in blood tests used to diagnose Celiac disease.  To measure the anti-gluten antibodies, you would have to consume 10 grams of gluten (4-6 slices of bread or equivalent) per day for a minimum of 2 weeks or longer.   A DNA test which looks for the most common genes for Celiac Disease may be a less invasive avenue to pursue.  Has your doctor checked you for nutritional deficiencies? Glad you're here!
    • knitty kitty
      Dangerously underweight, Perfect gluten free and insomnia

      By knitty kitty · Posted

      @SaiP, Insomnia is listed as one of the side effects of Loratadine.   Niacin B3 in the form Tryptophan, Pyridoxine B 6, Folate B 9, Cobalamine B12, Magnesium, and Thiamine B 1 are needed to produce the sleep hormone melatonin.  Insomnia can also be caused by low Vitamin D and low Vitamin A.   A strict gluten free diet can be low in essential  vitamins.   Gluten containing products are required to replace vitamins lost in processing and milling.  Gluten free processed foods are not required to have vitamins added.  White rice is not a good source of B vitamins.  Brown rice is little better.  Exposure to light (even grocery store lights) and heat (during transportation) can destroy B vitamins.   B vitamins are easily lost in urine and diarrhea because they are water soluble.  If you have had diarrhea longer than two weeks, you are probably low in B vitamins.  Fat based vitamins, like Vitamins D and A, can be low due to fat malabsorption in Celiac disease, too.   Damaged villa in Celiac Disease do not absorb B vitamins and fat based vitamins and minerals well.  Supplementing with essential nutrients while villi heal boosts the ability to absorb essential vitamins and minerals.  Vitamins are stored and utilized inside cells.  Blood levels are not accurate measurements of vitamin deficiencies.  You can have normal blood levels while having deficiencies inside cells.  The brain orders cells to release their stores so the brain and heart can keep functioning.  This results in normal blood levels, but vitamin deficits inside cells.   Your indulgence in a little bit of bread is providing some, but insufficient amounts, of vitamins needed to make sleep hormone melatonin while keeping your inflammation and histamine production high.   In addition to a B Complex, I took 1000 mg of tryptophan before bed to correct my insomnia caused by high histamine levels.  Correcting my Vitamin D level to between 75-100 nmol/ml helped as well.  Also Passion flower extract is helpful in falling asleep quickly.   Please stop eating gluten bread as this will keep your autoimmune response triggering and your antibody levels won't go down and your histamine levels will stay up as well.   Celiac is a marathon, not a sprint.  P.S. I wanted to reiterate that insomnia and weight loss are symptoms of Thiamine deficiency.  Benfotiamine is a form of thiamine that promotes intestinal healing.  Thiamine is water soluble and nontoxic even in high doses.  High doses are needed to correct thiamine deficiency. All mitochondria in cells utilize thiamine.  The World Health Organization says to take 500 - 1000 mg per day of thiamine and look for health improvement.  Diets that are high in carbohydrates like rice and gluten require more thiamine.  For every 1000 calories from carbohydrates, we need 500 mg more thiamine.  Thiamine is found in meat.  Few veggies contain thiamine. Can you rise from a squat without assistance?  This is the field test for thiamine deficiency used by WHO.  If you cannot rise easily from a squat you may be thiamine deficient.
×
×
  • Create New...