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Iron deficiency anaemia


MrsTurner

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MrsTurner Apprentice

Hi there,

Wondering how many of you with Celiac or NCGS who also suffer from anemia or iron deficiency, what your symptoms are/were and how you manage it.

I'm fairly new here, and may have undiagnosed NCGS after a negative celiac blood test. 

I've been gluten-free for just over a week now and noticing some positive changes to my symptoms, however I'm experiencing a worsening in symptoms which seem to be related to iron deficiency.

I've recently had a blood test which showed my serum ferritin as 10ug/L. My GP doesn't seem concerned about this, telling me it's not that low, even though everywhere I read says it is low, and for months I've experienced shortness of breath, palpitations, chest pain and fatigue (had normal ECGs and bloods for anything heart related, so these symptoms have been put down to anxiety, even with my iron levels being low). I've started taking OTC iron supplements and it's only been a week, but these symptoms actually seem to be getting worse.

Did anyone else experience anything similar? Roughly how long does it take to get iron stores high enough to not feel lousy? 

Strangely I also have a low resting heart rate which seems to keep decreasing. It's currently in the low 60s and mid/high 50s and I'm not particularly fit. Wondering if anyone else has anemia and a low heart rate as that's seems to contradict everything I am reading.

Thanks all. I got such a lovely positive response last time I posted by the way, I feel really supported by this community, so thanks 😊

 


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trents Grand Master

MrsTurner, google "pernicious anemia". It is basically caused by an inability of the gut to assimilate B12, itself a necessary nutrient to the assimilation of iron. If you have this, you will not benefit from oral iron supplementation.

MrsTurner Apprentice
5 minutes ago, trents said:

MrsTurner, google "pernicious anemia". It is basically caused by an inability of the gut to assimilate B12, itself a necessary nutrient to the assimilation of iron. If you have this, you will not benefit from oral iron supplementation.

Thank you trents. I've just had a look.

My last bloods showed Serum vitamin B12 level 417 ng/L [normal range 211.0 - 911.0] so it doesn't seem to fit (unless I'm misunderstanding the science behind it).

My CBC also shows a normal amount of red blood cells, just the ferritin that was low. 

If I've got it wrong, just let me know - it doesn't take much with all my brain fog 🤣

trents Grand Master
(edited)

Nope, I think you got the science right. Must be something else. Give it more time. It commonly takes around two years for thorough healing of the villi after going gluten free in the mature adult population. Less time for children and young folks probably. Ferritin is about iron storage so it may take awhile for the stores to be built back up as opposed to hemoglobin which which is about what iron is available for oxygen transport "now" in the cells. Ferritin is about reserves.

Edited by trents
Posterboy Mentor

MrsTurner,

I saw from another thread....that you said quoting

"Other things that may be of note:

33 Y/O female

Had a baby in 2020 and feel my health has gotten worse since then.

Had Covid in January 2022. Still suffered from POTS for a month after testing negative

Don't drink alcohol

Don't smoke

Don't have any caffeine

Not pregnant

Try to eat a varied and healthy diet and move as much as my body allows

Could do with losing around a stone to be optimal healthy weight - can't seem to lose it, despite being in a calorie deficit. "

It is not uncommon for a Pregnancy to trigger Heartburn and for the woman to continue to have Low Stomach Acid after the child is born.....I think this has happened to you.

Here is a nice article about it entitled "Can Pregnancy Trigger Celiac Disease?" and thought it just might.....

https://www.verywellhealth.com/can-pregnancy-trigger-celiac-disease-562302

Where they noted quoting from the article....

"First Comes Baby, Then Come Symptoms

Most women are diagnosed with celiac disease after at least one pregnancy—in fact, a comprehensive Italian study on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy."

And this sounds what is happening to you via the Low Stomach that has most likely developed during/after you  had your child and your body has not yet recovered from the stress of childbirth.

What most people overlook when trying to treat Iron Deficiency Anemia that Low Stomach Acid alone can be an independent trigger for IDA.

Here is the research on it..

Entitled "Is achlorhydria a cause of iron deficiency anemia?" and they concluded it definitely was!

https://academic.oup.com/ajcn/article/102/1/9/4564242

You should also take a good B-Complex at least 2x a day for a couple months......even better at 3x a day with meals.

Your Urine will begin to glow when you get enough B-2 aka Riboflavin.

Riboflavin status has been shown to also be a trigger for Anemia in women.

Here is the research entitled

"Suboptimal Biochemical Riboflavin Status Is Associated with Lower Hemoglobin and Higher Rates of Anemia in a Sample of Canadian and Malaysian Women of Reproductive Age"

https://pubmed.ncbi.nlm.nih.gov/31318024/

I hope this is helpful but it is not medical advice.

Good luck on your continued Journey!

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,



MrsTurner Apprentice
18 hours ago, Posterboy said:

MrsTurner,

I saw from another thread....that you said quoting

"Other things that may be of note:

33 Y/O female

Had a baby in 2020 and feel my health has gotten worse since then.

Had Covid in January 2022. Still suffered from POTS for a month after testing negative

Don't drink alcohol

Don't smoke

Don't have any caffeine

Not pregnant

Try to eat a varied and healthy diet and move as much as my body allows

Could do with losing around a stone to be optimal healthy weight - can't seem to lose it, despite being in a calorie deficit. "

It is not uncommon for a Pregnancy to trigger Heartburn and for the woman to continue to have Low Stomach Acid after the child is born.....I think this has happened to you.

Here is a nice article about it entitled "Can Pregnancy Trigger Celiac Disease?" and thought it just might.....

https://www.verywellhealth.com/can-pregnancy-trigger-celiac-disease-562302

Where they noted quoting from the article....

"First Comes Baby, Then Come Symptoms

Most women are diagnosed with celiac disease after at least one pregnancy—in fact, a comprehensive Italian study on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy."

And this sounds what is happening to you via the Low Stomach that has most likely developed during/after you  had your child and your body has not yet recovered from the stress of childbirth.

What most people overlook when trying to treat Iron Deficiency Anemia that Low Stomach Acid alone can be an independent trigger for IDA.

Here is the research on it..

Entitled "Is achlorhydria a cause of iron deficiency anemia?" and they concluded it definitely was!

https://academic.oup.com/ajcn/article/102/1/9/4564242

You should also take a good B-Complex at least 2x a day for a couple months......even better at 3x a day with meals.

Your Urine will begin to glow when you get enough B-2 aka Riboflavin.

Riboflavin status has been shown to also be a trigger for Anemia in women.

Here is the research entitled

"Suboptimal Biochemical Riboflavin Status Is Associated with Lower Hemoglobin and Higher Rates of Anemia in a Sample of Canadian and Malaysian Women of Reproductive Age"

https://pubmed.ncbi.nlm.nih.gov/31318024/

I hope this is helpful but it is not medical advice.

Good luck on your continued Journey!

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,



Thank you for this. I definitely feel that my symptoms only started after the birth of my son just over two years ago and have quickly got worse in the past months. 

I lost a lot of blood in childbirth too which was never replaced and GP has never thought to check my iron until just recently.

Karen B. Explorer

I can't speak to the effect of childbirth but I was so anemic, I was having heart palpitations, which led to the Celiac diagnosis for me 20 years ago. I worked with a hematologist to build my iron back up and one thing they told me is to take carbonyl iron. It's more readily absorbed. Also, take it with an acidic beverage like orange juice to increase absorption. They thought it would take six months to get to normal but I managed it in three months with Feosol carbonyl iron and eating spinach a lot.

I was deficient in B-12 and folic acid at that time and had been on prescription acid reduction medication, which was no longer needed when I went gluten free. They don't tell you that the acid reducing drugs cause B-12 deficiencies but they do. Hope some of this might help you get back to normal levels so you can keep up with your baby. 🙂

 

Congratulations, BTW!


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MrsTurner Apprentice
4 hours ago, Karen B. said:

I can't speak to the effect of childbirth but I was so anemic, I was having heart palpitations, which led to the Celiac diagnosis for me 20 years ago. I worked with a hematologist to build my iron back up and one thing they told me is to take carbonyl iron. It's more readily absorbed. Also, take it with an acidic beverage like orange juice to increase absorption. They thought it would take six months to get to normal but I managed it in three months with Feosol carbonyl iron and eating spinach a lot.

I was deficient in B-12 and folic acid at that time and had been on prescription acid reduction medication, which was no longer needed when I went gluten free. They don't tell you that the acid reducing drugs cause B-12 deficiencies but they do. Hope some of this might help you get back to normal levels so you can keep up with your baby. 🙂

 

Congratulations, BTW!

Thank you so much for the advice. Its reassuring to see other people have experienced similar things and come through the other side feeling much better than before. I'll keep crossing my fingers that things pick up quickly for me - he's definitely getting hard to keep up with now and I want to able to enjoy his childhood, not feel constantly poorly.

Interestingly I was actually prescribed Omeprazole a few months ago as my GP thought my abdominal pain was gastritis (I actually think its more like skin pain which even responds to the lightest touch and sounds similar to myofascitis), but I only took them for two weeks so hopefully that didn't really have too much of an effect on stomach acid etc.  I didn't think they sounded too friendly when I was reading the label.  

trents Grand Master

Omeprazole will have an immediate effect in lowering stomach acid. The real question is what effect will three weeks of lowered stomach acid have on other gut factors and other body systems. I would think nothing serious.

shadycharacter Enthusiast
On 6/29/2022 at 9:37 PM, MrsTurner said:

Hi there,

Wondering how many of you with Celiac or NCGS who also suffer from anemia or iron deficiency, what your symptoms are/were and how you manage it.

I'm fairly new here, and may have undiagnosed NCGS after a negative celiac blood test. 

I've been gluten-free for just over a week now and noticing some positive changes to my symptoms, however I'm experiencing a worsening in symptoms which seem to be related to iron deficiency.

I've recently had a blood test which showed my serum ferritin as 10ug/L. My GP doesn't seem concerned about this, telling me it's not that low, even though everywhere I read says it is low, and for months I've experienced shortness of breath, palpitations, chest pain and fatigue (had normal ECGs and bloods for anything heart related, so these symptoms have been put down to anxiety, even with my iron levels being low). I've started taking OTC iron supplements and it's only been a week, but these symptoms actually seem to be getting worse.

Did anyone else experience anything similar? Roughly how long does it take to get iron stores high enough to not feel lousy? 

Strangely I also have a low resting heart rate which seems to keep decreasing. It's currently in the low 60s and mid/high 50s and I'm not particularly fit. Wondering if anyone else has anemia and a low heart rate as that's seems to contradict everything I am reading.

Thanks all. I got such a lovely positive response last time I posted by the way, I feel really supported by this community, so thanks 😊

 

Perhaps because you no longer get iron from gluten-containing whole grains and fortified flour? Possibly other nutrients as well. You could compare the nutritional value of food you no longer eat, with the nutritional value of the glutenfree food you've replaced it with, to see if you get less iron now. 

MrsTurner Apprentice
16 hours ago, shadycharacter said:

Perhaps because you no longer get iron from gluten-containing whole grains and fortified flour? Possibly other nutrients as well. You could compare the nutritional value of food you no longer eat, with the nutritional value of the glutenfree food you've replaced it with, to see if you get less iron now. 

Thank you for your reply. My blood test for iron was actually before I went on a Gluten free diet so it won't have been related to that change. I have a suspicion I've been iron deficient a long time -  a combination of being anaemic during pregnancy, blood loss in child birth and always having heavy periods, along with a possibility of having a gluten sensitivity which could have affected my absorption.

Caligirl57 Rookie
On 6/29/2022 at 1:37 PM, MrsTurner said:

Hi there,

Wondering how many of you with Celiac or NCGS who also suffer from anemia or iron deficiency, what your symptoms are/were and how you manage it.

I'm fairly new here, and may have undiagnosed NCGS after a negative celiac blood test. 

I've been gluten-free for just over a week now and noticing some positive changes to my symptoms, however I'm experiencing a worsening in symptoms which seem to be related to iron deficiency.

I've recently had a blood test which showed my serum ferritin as 10ug/L. My GP doesn't seem concerned about this, telling me it's not that low, even though everywhere I read says it is low, and for months I've experienced shortness of breath, palpitations, chest pain and fatigue (had normal ECGs and bloods for anything heart related, so these symptoms have been put down to anxiety, even with my iron levels being low). I've started taking OTC iron supplements and it's only been a week, but these symptoms actually seem to be getting worse.

Did anyone else experience anything similar? Roughly how long does it take to get iron stores high enough to not feel lousy? 

Strangely I also have a low resting heart rate which seems to keep decreasing. It's currently in the low 60s and mid/high 50s and I'm not particularly fit. Wondering if anyone else has anemia and a low heart rate as that's seems to contradict everything I am reading.

Thanks all. I got such a lovely positive response last time I posted by the way, I feel really supported by this community, so thanks 😊

 

 

Caligirl57 Rookie
Just now, Caligirl57 said:

 

Hi Mrs Turner, sorry to hear about your anemia.  I believe I’ve had celiac my entire life. I am now 67. I am not a drinker, but celiac ruined my liver. I also have hemochromatosis. My iron levels were high. I had blood letting twice. It relieved my tiredness but I was still cold. My liver could not get rid of the toxins from my body. I ballooned up to 265 pounds. By the time I was evaluated for a liver transplant, I had 30 days to live. I received a Miracle 3 weeks later.  My weight dropped 130 pounds. This took a while. I became very anemic. One year post transplant, I was still a anemic. I was sent to get weekly Epogen injections. After 2 months, I’m feeling great! My blood counts are good, and I’m not tired all the time, and I’m not cold either! Have your hemoglobin numbers checked. I was told any thing over 11, I would not need an injection. Good luck to you, I sure hope this helps.

Bronwyn W Apprentice
On 6/29/2022 at 9:37 PM, MrsTurner said:

Hi there,

Wondering how many of you with Celiac or NCGS who also suffer from anemia or iron deficiency, what your symptoms are/were and how you manage it.

I'm fairly new here, and may have undiagnosed NCGS after a negative celiac blood test. 

I've been gluten-free for just over a week now and noticing some positive changes to my symptoms, however I'm experiencing a worsening in symptoms which seem to be related to iron deficiency.

I've recently had a blood test which showed my serum ferritin as 10ug/L. My GP doesn't seem concerned about this, telling me it's not that low, even though everywhere I read says it is low, and for months I've experienced shortness of breath, palpitations, chest pain and fatigue (had normal ECGs and bloods for anything heart related, so these symptoms have been put down to anxiety, even with my iron levels being low). I've started taking OTC iron supplements and it's only been a week, but these symptoms actually seem to be getting worse.

Did anyone else experience anything similar? Roughly how long does it take to get iron stores high enough to not feel lousy? 

Strangely I also have a low resting heart rate which seems to keep decreasing. It's currently in the low 60s and mid/high 50s and I'm not particularly fit. Wondering if anyone else has anemia and a low heart rate as that's seems to contradict everything I am reading.

Thanks all. I got such a lovely positive response last time I posted by the way, I feel really supported by this community, so thanks 😊

 

Hi,

I also find this resource so amazing 👏 Thanks to all.

I have had low iron stores for years (always put down to menstruation by doctors) and my resting heart rate averages around 56bpm. I was diagnosed with Celiac disease 10 months ago. Whilst doing some investigations into low iron this week, I found the following article that suggests that iron apparently does not deplete due to gastrointestinal bleeding in celiacs. Mant MJ, Bain VG, Maguire CG, Murland K, Yacyshyn BR. Prevalence of occult gastrointestinal bleeding in celiac disease. Clin Gastroenterol Hepatol. 2006 Apr;4(4):451-4. doi: 10.1016/j.cgh.2005.12.010. PMID: 16616349.

The only solution that works consistently to remedy shortness of breath, palpitations, chest pain and fatigue for me, is "Ferrinject" iron drips (on prescription) and Neurotropic B vitamins shot this morning. I speculate that the effectiveness could be because it goes directly into bloodstream. 

I would also very much appreciate specialist advice on best practice on managing malabsorption, as I have been diagnosed with low iron stores, low magnesium, low Vitamin B and D.

Marimarston Rookie
On 7/7/2022 at 9:34 AM, Bronwyn W said:

Hi,

I also find this resource so amazing 👏 Thanks to all.

I have had low iron stores for years (always put down to menstruation by doctors) and my resting heart rate averages around 56bpm. I was diagnosed with Celiac disease 10 months ago. Whilst doing some investigations into low iron this week, I found the following article that suggests that iron apparently does not deplete due to gastrointestinal bleeding in celiacs. Mant MJ, Bain VG, Maguire CG, Murland K, Yacyshyn BR. Prevalence of occult gastrointestinal bleeding in celiac disease. Clin Gastroenterol Hepatol. 2006 Apr;4(4):451-4. doi: 10.1016/j.cgh.2005.12.010. PMID: 16616349.

The only solution that works consistently to remedy shortness of breath, palpitations, chest pain and fatigue for me, is "Ferrinject" iron drips (on prescription) and Neurotropic B vitamins shot this morning. I speculate that the effectiveness could be because it goes directly into bloodstream. 

I would also very much appreciate specialist advice on best practice on managing malabsorption, as I have been diagnosed with low iron stores, low magnesium, low Vitamin B and D.

My understanding is that the anaemia does not come from intestinal bleeding, but rather from damage to the areas that absorb iron in the gut, so your ability to absorb iron from food is reduced. It can also lead to low calcium for the same reasons. I have had anaemia pretty much all my life, and was diagnosed as coeliac about15 years ago. I take iron every day and it doesn’t do much. I have recently been referred for iron infusion which I’m guessing is similar to your ferritin. This will work better because it is not relying on the gut to be absorbed. I also take a calcium supplement twice a day, which contains magnesium.

trents Grand Master
(edited)

Low serum calcium is probably not due to malabsorption from celiac disease because the body will take calcium from the bones to keep serum calcium from dropping below needed levels. But malabsorption therefore certainly can result in osteoporosis. If serum calcium is low there is probably another metabolic problem at work.

The anemia may be due to malabsorption of B12 which is a precursor to iron uptake. It's called pernicious anemia. They can give B12 injections to correct this but you can also do it with mega doses of oral B12.

Edited by trents
Posterboy Mentor
On 7/6/2022 at 2:26 AM, MrsTurner said:

Thank you for your reply. My blood test for iron was actually before I went on a Gluten free diet so it won't have been related to that change. I have a suspicion I've been iron deficient a long time -  a combination of being anaemic during pregnancy, blood loss in child birth and always having heavy periods, along with a possibility of having a gluten sensitivity which could have affected my absorption.

MrsTurner et Al,

You can't fix an Iron deficiency Anemia without finding out what the underlying cause(s) is?

Taking Iron by itself won't by itself help you......you need to find what other Co-Factors you are low in to help your Iron Absorption.

Two or three Common things is take your 1) Iron with Vitamin C and 2) treat your commonly co-morbid low stomach acid that occurs with Celiac disease (often)......3) take your Iron with a Zinc/Copper supplement as well because it is not commonly understood that Iron deficient Anemia is not an Iron problem but really a Copper problem instead.

See this article that explains why this is entitled "Its copper anemia not iron anemia"

https://www.bodybalanced.net/post/its-copper-anemia-not-iron-anemia

Also regarding your long term Iron deficiency.......when we get low in our stomach acid the body can no longer convert the Insoluble ferric iron Fe3 form to the absorbing ferrous iron Fe2 form.

Here is a nice article on it.....

https://www.ncbi.nlm.nih.gov/books/NBK448204/

Quoting from the Cellular paragraph on Iron absorption or lack there of....they note

Cellular

"The absorption of most dietary iron occurs in the duodenum and proximal jejunum and depends heavily on the physical state of the iron atom. At physiological pH, iron exists in the oxidized, ferric (Fe3+) state. To be absorbed, iron must be in the ferrous (Fe2+) state or bound by a protein such as heme. The low pH of gastric acid in the proximal duodenum allows a ferric reductase enzyme, duodenal cytochrome B (Dcytb), on the brush border of the enterocytes to convert the insoluble ferric (Fe3+) to absorbable ferrous (Fe2+) ions. Gastric acid production plays a key role in plasma iron homeostasis."

And without a strong stomach acid the Iron you are taking is never converted into the absorbile form needed by the body......and in large part why you have never been able to help your Iron deficiency anemia.

Also finally.....when you get low in Niacin aka Vitamin B3 best taken as the non flushing form Niaciamide you get low in Iron stores in the liver naturally.......this is important because Niacin is responsible in large part for the production of stomach acid and explains why when we get low in Niacin our Zinc and Iron levels also get low!

Here is the research on it entitled "Effect of nicotinic acid (aka Niacin) on zinc and iron metabolism"

https://pubmed.ncbi.nlm.nih.gov/9353874/

quoting from the astract

"When mice were fed with nicotinic acid-deficient, -adequate and -excess synthetic diets for four weeks it was observed that, in comparison with the nicotinic acid-deficient diet, percent zinc absorption, intestinal zinc, percent haeomoglobin and liver iron increased significantly under nicotinic acid-adequate and -excess conditions. The results obtained suggested that nicotinic acid (aka Niacin), in addition to its known effect on growth and metabolism, may be playing an important role in enhancing zinc and iron utilization."

I wrote a blog post on how to Niacinamide and why you would want to.....maybe it will help you to read it.

Most people won't take Niacin aka Vitamin B3 long enough to do them any good because it causes intense flushing for the approx. 30 minutes after you take it.... in higher doses but the good news Niacinamide has all the same benefits without the intense flushing....

The problem at least in "Brick and Motor" Stores.......Niacinamide is very hard to find.....but thankfully you can order it online readily and is the form I would recommend to you....

But note frequency is much more important than dose size when it come to B-Vitamins....as I explain in Faq on  how to take Niacinamide.......so take it frequently like 3x a day with meals for at least 3 months and you will notice a consistent and persistent burping a sign you are now digesting your food again......especially if you are  not now taking a PPIs or other Acid blocker/reducer......and bloating and indigestion was a common complaint before  you begin taking the Niacinamide......

I call it the Niacinamide Challenge.....it been shown to help digestive problems of all kinds because it restores our stomach acid to a healthy level again.  A healthy child will burp after 6 months and most GI healthy adults will burp again after taken Niacinamide 3x a day for 3 or 4 months.

See this abstract article about it entitled Niacin(amide) helps digestive problems!

https://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

I hope this is helpful but it is not medical advise.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

Beverage Rising Star
On 6/29/2022 at 12:37 PM, MrsTurner said:

I've been gluten-free for just over a week now and noticing some positive changes to my symptoms, however I'm experiencing a worsening in symptoms which seem to be related to iron deficiency.

 

I just want to caution on anemia being always from iron deficiency. There can be other causes. I tested low iron for years and years, docs always telling me to take more iron, but it never improved.

It took until I was 19 years old in college to figure it out.  A young medical student in the student health clinic did additional blood tests that showed low in iron, but also lots of red blood cells but very small, less hemoglobin.  He was very methodical about giving me high dose iron, then testing again to see if the iron was doing anything...it did not result in any more or any larger red blood cells, no increase in iron levels. 

He got me a referral to a hematologist who spotted that I had thalassemia, an inherited anemia common in the Mediterranean area (my mom is Portuguese), and taking iron is actually detrimental as it is not water soluble and stores in organs and damages them.  I'd inherited it from only one side of my genes, so not very serious.  Treatment is to not take additional iron or too many foods high in iron, and nothing more to do. 

So just a caution to be sure it's iron deficiency before pouring a lot of iron into your body. If your doc is telling you to take iron and not following up with repeating tests to see if it does anything, then I strongly suggest you get a different doctor.

MrsTurner Apprentice
1 minute ago, Beverage said:

I just want to caution on anemia being always from iron deficiency. There can be other causes. I tested low iron for years and years, docs always telling me to take more iron, but it never improved.

It took until I was 19 years old in college to figure it out.  A young medical student in the student health clinic did additional blood tests that showed low in iron, but also lots of red blood cells but very small, less hemoglobin.  He was very methodical about giving me high dose iron, then testing again to see if the iron was doing anything...it did not result in any more or any larger red blood cells, no increase in iron levels. 

He got me a referral to a hematologist who spotted that I had thalassemia, an inherited anemia common in the Mediterranean area (my mom is Portuguese), and taking iron is actually detrimental as it is not water soluble and stores in organs and damages them.  I'd inherited it from only one side of my genes, so not very serious.  Treatment is to not take additional iron or too many foods high in iron, and nothing more to do. 

So just a caution to be sure it's iron deficiency before pouring a lot of iron into your body. If your doc is telling you to take iron and not following up with repeating tests to see if it does anything, then I strongly suggest you get a different doctor.

Thanks for your comment. I also had a full blood count which showed normal amount of red blood cells at normal size, just low ferritin. 

shadycharacter Enthusiast
4 hours ago, MrsTurner said:

Thanks for your comment. I also had a full blood count which showed normal amount of red blood cells at normal size, just low ferritin. 

Apparently copper is important for iron absorbtion. If low iron is caused by malapbsorption I suppose theres a risk for low copper as well, even though copper deficiency is generally considered rare. 

MrsTurner Apprentice
3 minutes ago, shadycharacter said:

Apparently copper is important for iron absorbtion. If low iron is caused by malapbsorption I suppose theres a risk for low copper as well, even though copper deficiency is generally considered rare. 

Thank you.  Lots of people have mentioned lots of different deficiencies and it's definitely an education for me! I never quite gave that much thought to how being low on vitamins and minerals can have such an impact on the whole body. The list of things I'll be speaking to my GP about next week is getting longer by the minute 😂

 

Aimeeball Newbie

Have you had an endoscopy? I was extremely anemic and they found I had duodenal cancer ( rare and terminal if not found early). I was an undiagnosed celiac until the endoscopy. When they biopsied for celiac my results came back weird so they did another endoscopy and went deeper and found the cancer. I had surgery to remove it and now my anemia is under control.

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      3 year old gluten intolerance?


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    • Captain173
      Do you have any links that show studies where NCGS and/or infections have caused high Ttg iga levels.  I've yet to see anything that truly supports this. Everything I've read says the high levels are celiac specific.
    • gailc
      I get coughing and choking from canola oil. I cough up stuff.  Symptom is like bronchitis.  I have gluten intolerance, maybe celiac.  the choking persists for about a week, it simulates a cold.  I got it from the gluten free menu at Outback too, that time I got cramps for 25 hours. the cramps start about 20 minutes after finishing eating.  
    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
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