Gluten free for many years but still struggle with anemia

[Alice-in-Nederland]

Hello everyone!

I am new to this forum and I am really happy that I have found such large and supportive gluten-free community. I have been reading previous content and it was most helpful.  

I am writing here to get more insight into people's experience with gluten-free diet and anemia. I have been diagnosed with celiac disease 8 years ago, and I am 34 now, but I think I may have had it since birth. According to my mother I had anemia since I was a child and for long time that was my only symptom. After being diagnosed and going on gluten-free diet I gained weight, no stomach pain, and my anemia improved. However, I still have quite low ferritin which is 1.9 and normal range is 15-150 , and hemoglobin that is below normal range (6.2 and range is 7.5-10). It is not as bad as it was but for sure it is not great. I would like to know if someone else has this issue even after many years of gluten-free diet? I don't take iron tablets because they wreck my stomach and I was never put on iron infusion - so I am not really doing much to improve my anemia except with food, and doctors here in the Netherlands do not offer any substitute for iron tablets. 

Even though I have anemia I feel completely ok, not tired or anything, stable weight and so on - I guess my body just adapted over the years. However my doctor is convinced that I have refractory celiac disease. Over the last 7 years I had 2x colonoscopy & endoscopy with biopsy, MRY, and video capsule investigation. All test were negative and showed nothing abnormal. In two weeks I will go for another colonoscopy & endoscopy with biopsy and I wonder if this is necessary. My doctor thinks that "just because we didn't find anything 2 years before, it doesn't mean we won't find something now", and he is convinced that I am bleeding somewhere in my body, which is always scary to hear, and I have been listening this for 7 years now, every time I go for an appointment. And refractory celiac disease is not something anyone wants to hear either. 

I would appreciate to hear your experiences on this matter, and every advice is most welcome.

Cheers,

A.  

[trents]

17 minutes ago, Alice_in_Nederland said:

Hello everyone!

I am new to this forum and I am really happy that I have found such large and supportive gluten-free community. I have been reading previous content and it was most helpful.  

I am writing here to get more insight into people's experience with gluten-free diet and anemia. I have been diagnosed with celiac disease 8 years ago, and I am 34 now, but I think I may have had it since birth. According to my mother I had anemia since I was a child and for long time that was my only symptom. After being diagnosed and going on gluten-free diet I gained weight, no stomach pain, and my anemia improved. However, I still have quite low ferritin which is 1.9 and normal range is 15-150 , and hemoglobin that is below normal range (6.2 and range is 7.5-10). It is not as bad as it was but for sure it is not great. I would like to know if someone else has this issue even after many years of gluten-free diet? I don't take iron tablets because they wreck my stomach and I was never put on iron infusion - so I am not really doing much to improve my anemia except with food, and doctors here in the Netherlands do not offer any substitute for iron tablets. 

Even though I have anemia I feel completely ok, not tired or anything, stable weight and so on - I guess my body just adapted over the years. However my doctor is convinced that I have refractory celiac disease. Over the last 7 years I had 2x colonoscopy & endoscopy with biopsy, MRY, and video capsule investigation. All test were negative and showed nothing abnormal. In two weeks I will go for another colonoscopy & endoscopy with biopsy and I wonder if this is necessary. My doctor thinks that "just because we didn't find anything 2 years before, it doesn't mean we won't find something now", and he is convinced that I am bleeding somewhere in my body, which is always scary to hear, and I have been listening this for 7 years now, every time I go for an appointment. And refractory celiac disease is not something anyone wants to hear either. 

I would appreciate to hear your experiences on this matter, and every advice is most welcome.

Cheers,

A.  

Welcome to the forum, A. !

A., for the sake of clarification, have you been making a serious attempt to eat gluten free since diagnosis? You don't really say but your question at the beginning of your second paragraph implies that.

Your anemia is borderline low but your very low ferritin levels are a concern. That tells me you are assimilating iron from your diet fairly well but not getting enough of it or are you are you are losing it in some way. They do not give iron infusions in the Netherlands? Are you eating iron rich foods? The best iron sources are red meats. Vegetable iron, like from green leafy veggies, isn't absorbed as well.

[trents]

Also, are you consuming oats and/or dairy? About 10% of celiacs react to oats like they do wheat/barley/rye. And it's not clear that this is due to cross contamination with gluten containing grains or whether the oat protein itself, which closely resembles gluten, is the culprit. And recent studies have shown that for some people, the protein casein in dairy blunts villi like you see in celiac disease. I know that in general, the Dutch people consume a lot of dairy.

[Alice-in-Nederland]

44 minutes ago, trents said:

Welcome to the forum, A. !

A., for the sake of clarification, have you been making a serious attempt to eat gluten free since diagnosis? You don't really say but your question at the beginning of your second paragraph implies that.

Your anemia is borderline low but your very low ferritin levels are a concern. That tells me you are assimilating iron from your diet fairly well but not getting enough of it or are you are you are losing it in some way. They do not give iron infusions in the Netherlands? Are you eating iron rich foods? The best iron sources are red meats. Vegetable iron, like from green leafy veggies, isn't absorbed as well.

Hi trents, and thanks for your reply! I am on a strict gluten free diet and I never cheat. That means I only use fresh food or products marked by gluten free symbol and I cook my own meals. However, I do occasionally (~once a month) go to a restaurant, where I would call in advance and explain that I am celiac and I need absolutely gluten free meal. I cannot guarantee there wasn't some cross-contamination in those cases, but I at least never felt it. 

In the last several weeks I have put a lot of effort to eat iron rich food. In 2 weeks I will do blood test again and see if that has helped a bit. I can't say I paid much attention if I ate iron rich food before, but I do always try to eat fresh and diverse food. And I must say I don't eat that much red meat, not a big fan. And beetroot is the worst, but I eat it now every day. In addition, I substituted my cornflakes with amaranth, teff, and quinoa that suppose to be rich in iron. I also started taking Floradix, based on the experience of some people on this forum - it's been only 3 days but it seems I can't tolerate it well and so far no stomach pain and constipation.

As for iron infusion, I never had it. GP cannot not order it for me, they can only give iron pills and my celiac disease specialist thinks issue is somewhere else (i.e., that I am bleeding somewhere in my intestines) and that iron infusion is reserved for people in critical condition which I am not. My iron level and hemoglobin have been pretty much constant over the last 7 years, and all the tests I did over that period were negative. I have appointment with him end of June and will ask again. But essentially, I haven't been taking any iron supplements, until now with Floradix. I only got iron pills and since that didn't work for my stomach I was not offered any other solution. 

A.   

[Alice-in-Nederland]

24 minutes ago, trents said:

Also, are you consuming oats and/or dairy? About 10% of celiacs react to oats like they do wheat/barley/rye. And it's not clear that this is due to cross contamination with gluten containing grains or whether the oat protein itself, which closely resembles gluten, is the culprit. And recent studies have shown that for some people, the protein casein in dairy blunts villi like you see in celiac disease. I know that in general, the Dutch people consume a lot of dairy.

I would sometimes by accident get box of gluten-free cookies and only see at home that they contain gluten-free oats. So apart from these accidents, which are rare I do not eat oats. Dairy is another story Indeed hard to avoid that in the Netherlands. But I have now kicked that out of my diet too (in the last week or so, but I plan to stick to it). Over the time I discovered that garlic and onion also don't work for my stomach. I could see that some people on this forum have the same issue. 

[GFinDC]

Hi Alice,

Chicken eggs are a good source of iron also.  Free range eggs are the way to go.  There is an iron fish that people put in their cooking pots to increase the iron in food they eat.  Maybe worth trying, I don't know for sure.

https://luckyironfish.com/  A cast iron cooking pan might do just as well as the fish.

Your stool can be tested for blood loss.  Fecal occult test or some such name.  Sounds simpler and easier than another endoscopy to me.  if you are losing blood in your gut it tends to turn stool black.

 

[trents]

I doubt if this is the issue, since you seem to be assimilating some iron from your diet, but have you been checked for pernicious anemia? This is caused by the inability to assimilate B12 due to lack of something called "intrinsic factor."

[Alice-in-Nederland]

3 minutes ago, GFinDC said:

Hi Alice,

Chicken eggs are a good source of iron also.  Free range eggs are the way to go.  There is an iron fish that people put in their cooking pots to increase the iron in food they eat.  Maybe worth trying, I don't know for sure.

https://luckyironfish.com/  A cast iron cooking pan might do just as well as the fish.

Your stool can be tested for blood loss.  Fecal occult test or some such name.  Sounds simpler and easier than another endoscopy to me.  if you are losing blood in your gut it tends to turn stool black.

 

Hi! I never heard of that cooking tool!  looks really interesting! I will try to order one lucky fish. Thanks for that info! 

I have been tested for blood in stool several years ago but the test was negative. I don't want to sound gross, but I always check my stool and I never saw anything unusual. 

[Alice-in-Nederland]

7 minutes ago, trents said:

I doubt if this is the issue, since you seem to be assimilating some iron from your diet, but have you been checked for pernicious anemia? This is caused by the inability to assimilate B12 due to lack of something called "intrinsic factor."

In two weeks I will do several blood tests, and I noticed one of them is for b12 level. But I don't think I was ever tested for it before. I wonder what results will show. 

[trents]

Blood in the stool will not be visible unless the sight of the leak is in the lower part of the intestinal track. Then it would be bright red. If the bleed sight is higher up then it may give the stool a darker appearance than normal.

[MADMOM]

4 hours ago, Alice_in_Nederland said:

Hello everyone!

I am new to this forum and I am really happy that I have found such large and supportive gluten-free community. I have been reading previous content and it was most helpful.  

I am writing here to get more insight into people's experience with gluten-free diet and anemia. I have been diagnosed with celiac disease 8 years ago, and I am 34 now, but I think I may have had it since birth. According to my mother I had anemia since I was a child and for long time that was my only symptom. After being diagnosed and going on gluten-free diet I gained weight, no stomach pain, and my anemia improved. However, I still have quite low ferritin which is 1.9 and normal range is 15-150 , and hemoglobin that is below normal range (6.2 and range is 7.5-10). It is not as bad as it was but for sure it is not great. I would like to know if someone else has this issue even after many years of gluten-free diet? I don't take iron tablets because they wreck my stomach and I was never put on iron infusion - so I am not really doing much to improve my anemia except with food, and doctors here in the Netherlands do not offer any substitute for iron tablets. 

Even though I have anemia I feel completely ok, not tired or anything, stable weight and so on - I guess my body just adapted over the years. However my doctor is convinced that I have refractory celiac disease. Over the last 7 years I had 2x colonoscopy & endoscopy with biopsy, MRY, and video capsule investigation. All test were negative and showed nothing abnormal. In two weeks I will go for another colonoscopy & endoscopy with biopsy and I wonder if this is necessary. My doctor thinks that "just because we didn't find anything 2 years before, it doesn't mean we won't find something now", and he is convinced that I am bleeding somewhere in my body, which is always scary to hear, and I have been listening this for 7 years now, every time I go for an appointment. And refractory celiac disease is not something anyone wants to hear either. 

I would appreciate to hear your experiences on this matter, and every advice is most welcome.

Cheers,

A.  

have your celiac levels gone down?  if yes then it’s not refractory celiac i suggest u do take iron supplements - there are many out there that are coated and easy in the stomach i take them as well - if you are still menstruating then obv u will be more anemic - i was until i went through menopause and my levels have gone up just about normal although my ferritin was 7.9 when i got diagnosed with celiac - try the iron with calcium for better absorption - i bet you will see an improvement 

[Alice-in-Nederland]

4 minutes ago, MADMOM said:

have your celiac levels gone down?  if yes then it’s not refractory celiac i suggest u do take iron supplements - there are many out there that are coated and easy in the stomach i take them as well - if you are still menstruating then obv u will be more anemic - i was until i went through menopause and my levels have gone up just about normal although my ferritin was 7.9 when i got diagnosed with celiac - try the iron with calcium for better absorption - i bet you will see an improvement 

Hi madmom! Thanks for your reply. My antibody levels went down when I started gluten-free diet and they have been down ever since. Some articles say it is possible to have refractory celiac disease even when antibody levels are down, which is what frightens me 😬. I do have my periods but they are mild, and I don't think they could explain such low iron. I will add calcium to my diet, thanks for your suggestion! 

[MADMOM]

15 minutes ago, Alice_in_Nederland said:

Hi madmom! Thanks for your reply. My antibody levels went down when I started gluten-free diet and they have been down ever since. Some articles say it is possible to have refractory celiac disease even when antibody levels are down, which is what frightens me 😬. I do have my periods but they are mild, and I don't think they could explain such low iron. I will add calcium to my diet, thanks for your suggestion! 

add the iron as well?  did ur endoscopy show healing of your villi?  if yes it can’t be refractory - i’ve had anemia all my life but so does my mom and one sister so it doesn’t necessarily mean it’s refractory unless ur villi hasn’t healed - please let me know 

[Alice-in-Nederland]

1 hour ago, MADMOM said:

add the iron as well?  did ur endoscopy show healing of your villi?  if yes it can’t be refractory - i’ve had anemia all my life but so does my mom and one sister so it doesn’t necessarily mean it’s refractory unless ur villi hasn’t healed - please let me know 

I am taking iron already in liquid form (Floradix), I started 3 days ago. My endoscopy showed healing of the villi quite quickly on the gluten-free diet but it took 3 years before my anemia improved a bit on its own. However 6.8 was the highest I could reach, whereas normal level is 7.5-10 for women. Anemia also runs in my family, but I am the only one ever diagnosed with celiac disease. So I wonder if maybe my other family members have undiagnosed celiac disease, or maybe we all have some additional issue with anemia. In two weeks they will do again endoscopy and gastroscopy with biopsy where they test presence of certain type of lymphocytes (if I remember correctly) which indicate ongoing inflammation. I did this test two times before and both times it was negative. Also no sign of villi damage. I will let you know how the test went and if there are any new insights regarding anemia.

[trents]

I think taking calcium with will likely have a negative effect on iron absorption. https://pubmed.ncbi.nlm.nih.gov/21462112/#:~:text=Studies on human subjects have,salts or in dairy products.

Calcium supplementation raises the PH in the gut. To improve iron absorption you want to take something acid along with it like Vitamin C, orange juice or tomato juice that lowers PH.

Edited May 23, 2021 by trents

[Alice-in-Nederland]

2 minutes ago, trents said:

I think taking calcium with will likely have a negative effect on iron absorption. https://pubmed.ncbi.nlm.nih.gov/21462112/#:~:text=Studies on human subjects have,salts or in dairy products.

Calcium supplementation raises the PH in the gut. To improve iron absorption you want to take something acid along with it like Vitamin C, orange juice or tomato juice.

Thanks! So far I have been taking a glass of fresh orange juice every day and I add strawberries and blackcurrant to my breakfast. And Floradix also contains some vit C but not sure in what amount. I hope it all helps...

[trents]

The Floradix is not heme iron, It's plant based iron so it may not be as effective.

[Alice-in-Nederland]

1 minute ago, trents said:

The Floradix is not heme iron, It's plant based iron so it may not be as effective.

I guessed as much, but it's better than nothing 😔

[MADMOM]

1 hour ago, trents said:

I think taking calcium with will likely have a negative effect on iron absorption. https://pubmed.ncbi.nlm.nih.gov/21462112/#:~:text=Studies on human subjects have,salts or in dairy products.

Calcium supplementation raises the PH in the gut. To improve iron absorption you want to take something acid along with it like Vitamin C, orange juice or tomato juice that lowers PH.

that’s what i meant sorry 

[HappyPlace]

This sounds a lot like my son. After more than 2 years of taking 145mg. of iron daily, his ferritin had barely moved. He was referred to a hematologist and we discovered that his hepcidin doesn’t function properly which blocks iron absorption. The recommended solution was to take his iron supplement every other day (instead of every day, to allow his hepcidin to reset) with both heme and non-heme sources of iron at the same time with vitamin C - supplement must be at least 2 hours after and 1 hour before any dairy. In 3 months time, his ferritin went from borderline to ideal range. His pediatrician said she is now recommending every other day dosing for anemia as standard practice. 

[GF-Cate]

Not sure if this is true for Floradix in other countries, but in the US one of the versions of Floradix contains gluten (wheat germ extract & yeast extract).
https://www.floradixusa.com/products/floradix-iron-herbs-liquid-herbal-supplement

There is another version labeled "gluten free & yeast free", but double check the label and ingredients to be sure the one you have is gluten-free (the packaging in the US is almost identical between the 2 versions).

[Alice-in-Nederland]

On 5/26/2021 at 8:15 AM, HappyPlace said:

This sounds a lot like my son. After more than 2 years of taking 145mg. of iron daily, his ferritin had barely moved. He was referred to a hematologist and we discovered that his hepcidin doesn’t function properly which blocks iron absorption. The recommended solution was to take his iron supplement every other day (instead of every day, to allow his hepcidin to reset) with both heme and non-heme sources of iron at the same time with vitamin C - supplement must be at least 2 hours after and 1 hour before any dairy. In 3 months time, his ferritin went from borderline to ideal range. His pediatrician said she is now recommending every other day dosing for anemia as standard practice. 

Hi HappyPlace! Thank you for your response! I never heard of hepcidin before and that it has such important role in iron absorption. I will discuss this with my doctor. It really helps to gather all this information before my appointment so I discuss different options with my doctor. So far focus was on bleeding somewhere in my stomach and many invasive test I had do not support this theory. I would like to look into alternative causes of my anemia. Thanks again for sharing the story of your son. 

[Alice-in-Nederland]

15 hours ago, GF_Cate said:

Not sure if this is true for Floradix in other countries, but in the US one of the versions of Floradix contains gluten (wheat germ extract & yeast extract).
https://www.floradixusa.com/products/floradix-iron-herbs-liquid-herbal-supplement

There is another version labeled "gluten free & yeast free", but double check the label and ingredients to be sure the one you have is gluten-free (the packaging in the US is almost identical between the 2 versions).

You are completely right, there are two versions of Floradix, also here in Europe, and they look identical! I read label 5x to make sure I had gluten-free one. They could have invested a bit more effort into packaging

6 minutes ago, Alice_in_Nederland said:

 

 

[HLM]

I was diagnosed with Celiac in 2008 but convinced I've had it my entire life.  I'm 53 now and have been struggling with iron deficiency and anemia ONLY diagnosed after hernia surgery in 2017 which caused a blood clot.  I was sent to an oncologist specializing in blood cancers and other blood disorders and have had 3 years of IV iron infusions, about every 3 months.  

Recently I tested for high sensitivity to eggs and moderate sensitivity to dairy.  I eliminated for about 4 months now and when I went for my usual 3 month blood work, my iron & ferritin levels were the highest they have ever been.  I think either the eggs or dairy may have been the culprit. It's worth a try to eliminate or get further testing. 

[Scott Adams]

Welcome to the forum @HLM, and it's interesting to hear your story, and that it took eliminating additional foods for your iron and ferritin levels to improve.