Gluten free for many years but still struggle with anemia

[Posterboy]

On 6/1/2021 at 9:12 AM, HLM said:

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. 

HLM,

You might enjoy reading this thread about how Dairy could be involved in Refractory Celiac disease, in part, from Casein(s) in one diet.

It seams to bear our many of your own experiences with Dairy and possible eggs.

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

Posterboy,

 

[Posterboy]

On 5/25/2021 at 11:15 PM, 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. 

Happy Place and Alice,

I had read about Hepcidin before....but since you mentioned it again.....I wondered whether their was any good research on the topic.

I have had Iron Overload aka HH for at least the last 6 months now....

I have found that too much Iron can be from Low Copper and Low Vitamin A.

Here is  the research on the Hepcidin and Low Vitamin A connection.

Entitled  "Vitamin A deficiency increases hepcidin expression and oxidative stress in rat"

https://www.sciencedirect.com/science/article/abs/pii/S0899900708005029#:~:text=Vitamin A deficiency increased liver hepcidin mRNA and,and significantly increases divalent metal transporter-1 mRNA levels

I mentioned the copper connection about my Iron (either too much or too little) issue(s) to my doctor but the doctor wouldn't even consider it ....so I have had to try and figure it out on my own!  Nothing unusual there....Sadly!

Vitamin A is commonly low in Celiacs.....much like Vitamin D is commonly low.....In fact many Fat Solubles Vitamins are often low in Celiacs......but their is much less awareness of deficiency of Vitamin A in Celiac's....

Note their conclusion quoting

"These results suggest that vitamin A maintains iron homeostasis by the modulation of liver hepcidin expression. The increase of lipid peroxidation in vitamin A deficiency seems to be iron dependent, whereas protein oxidation is not."

I can't say I understand it all myself....but I do know they are related conditions.

I have always found this Deanna Minich article helpful in finding out what Vitamin/Mineral deficiency or what deficiencies can trigger other deficiencies.

https://www.deannaminich.com/vitamin-and-mineral-interactions-the-complex-relationship-of-essential-nutrients/

I am providing the link so you both can study these relationships in more detail.

It is a cascade.....like domino's falling.....we just don't know which Vitamin/Mineral deficiency will trigger another domino to fall!.....and the doctor's aren't studying it!

So it is left to us to try and figure it out ourselves!

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

Good luck on both your continued journeys!

Posterboy,

[Posterboy]

Alice,

Don't be afraid to take a B-Complex with your meals.....or at least twice a day.

Both B2 (Riboflavin) and B3 (Niacin) have been shown to help Anemia.

Usually this takes about two or three months to notice  a sustainable difference...

Here is the research on it...

Entitled "The effect of riboflavin deficiency in rats on the absorption and distribution of iron"

https://pubmed.ncbi.nlm.nih.gov/3395601/

And this  one on how Niacin aka Vitamin B3 can help Iron and Zinc absorption...

Entitled "Effect of nicotinic acid (Niacin) on zinc and iron metabolism"

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

Generally one would want to take Niacin as Niacinamide to avoid the flushing that Niacin can cause especially on an empty stomach.

When you get low in Stomach Acid your iron levels will get low.

Here is a Posterboy blog post that talks about Low Stomach in Celiacs going undiagnosed or misdiagnosed instead.

Maybe it will help you to read it....

Niacin helps treat low stomach acid and can help your Iron deficiency anemia by increasing your stomach acid levels.

But it is best to Niacin(amide) as a B-Complex because the time you are low in Niacin you are low in many other of your B-Complex Vitamins as well.

B2 (Riboflavin) is also important in our body synthesizing it's own Niacin itself.

Also Low/NO Stomach Acid has been proven to be, in part, a undiagnosed or under diagnosed cause of Iron Deficiency Anemia aka IDA.

See this research about it...

Entitled "Is achlorhydria (aka NO Stomach Acid) a cause of iron deficiency anemia?"

https://pubmed.ncbi.nlm.nih.gov/25994564/

And their answer was unequivocally YES!

IF as the research shows both Riboflavin and Niacin are important for Iron absorption.....then this makes perfect sense in the light of the fact that Niacin can help Low Stomach Acid levels!

Taking Magnesium as a Citrate and Benfotiamine a Fat Soluble B1 (again with meals) can also help many of the fatigue symptom's you might be feeling from your anemia!

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

Posterboy,

[Alice-in-Nederland]

On 6/1/2021 at 4:12 PM, HLM said:

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. 

Hi HLM! Thank you for letting me know about your experience! I eliminated dairy from my diet for several weeks now - it is too early to tell if it has any effect on my iron level, but at least my digestion has improved. Can you tell me how did you get tested for egg and dairy sensitivity? Is there some test for food sensitivity or was it simply by eliminating eggs and dairy from your diet and seeing if makes you feel better? I had my blood taken yesterday, fingers crossed that there is some improvement in my iron levels 😬

[Alice-in-Nederland]

22 hours ago, Posterboy said:

Alice,

Don't be afraid to take a B-Complex with your meals.....or at least twice a day.

Both B2 (Riboflavin) and B3 (Niacin) have been shown to help Anemia.

Usually this takes about two or three months to notice  a sustainable difference...

Here is the research on it...

Entitled "The effect of riboflavin deficiency in rats on the absorption and distribution of iron"

https://pubmed.ncbi.nlm.nih.gov/3395601/

And this  one on how Niacin aka Vitamin B3 can help Iron and Zinc absorption...

Entitled "Effect of nicotinic acid (Niacin) on zinc and iron metabolism"

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

Generally one would want to take Niacin as Niacinamide to avoid the flushing that Niacin can cause especially on an empty stomach.

When you get low in Stomach Acid your iron levels will get low.

Here is a Posterboy blog post that talks about Low Stomach in Celiacs going undiagnosed or misdiagnosed instead.

Maybe it will help you to read it....

Niacin helps treat low stomach acid and can help your Iron deficiency anemia by increasing your stomach acid levels.

But it is best to Niacin(amide) as a B-Complex because the time you are low in Niacin you are low in many other of your B-Complex Vitamins as well.

B2 (Riboflavin) is also important in our body synthesizing it's own Niacin itself.

Also Low/NO Stomach Acid has been proven to be, in part, a undiagnosed or under diagnosed cause of Iron Deficiency Anemia aka IDA.

See this research about it...

Entitled "Is achlorhydria (aka NO Stomach Acid) a cause of iron deficiency anemia?"

https://pubmed.ncbi.nlm.nih.gov/25994564/

And their answer was unequivocally YES!

IF as the research shows both Riboflavin and Niacin are important for Iron absorption.....then this makes perfect sense in the light of the fact that Niacin can help Low Stomach Acid levels!

Taking Magnesium as a Citrate and Benfotiamine a Fat Soluble B1 (again with meals) can also help many of the fatigue symptom's you might be feeling from your anemia!

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

Posterboy,

Hi Posterboy! Thank you for all this information! I have been using vitamin B complex for many years and it really helps with my brain fog. Recently I stopped with it because I was getting random muscle twitches on a daily basis and I wasn't sure what was causing it, so I started to eliminate my supplements. Now that I know that these twitches are caused by anxiety, I need to start again with vit B complex. And my anxiety is connected to my anemia somehow, at least anemia makes it worse, it's just weird how one thing leads to another...

[HLM]

16 hours ago, Alice_in_Nederland said:

Hi HLM! Thank you for letting me know about your experience! I eliminated dairy from my diet for several weeks now - it is too early to tell if it has any effect on my iron level, but at least my digestion has improved. Can you tell me how did you get tested for egg and dairy sensitivity? Is there some test for food sensitivity or was it simply by eliminating eggs and dairy from your diet and seeing if makes you feel better? I had my blood taken yesterday, fingers crossed that there is some improvement in my iron levels 😬

Interesting.  I'll have a read. I take multiple supplements but I never quite know if I am actually absorbing them.  B, D with K, and a probiotic. My hernia surgery was a result of severe GERD so I'm guessing stomach acid is not the problem.  I used Everlywell testing for the food sensitivity and many food diaries.  Good luck to you!

[dolson]

Hi HLM, We are totally different. Eggs do not bother me one iota. I love eggs. It's one of the few things I can digest with no problems. Part of the problem with Celiac Disease is we are all different. I can no longer eat potatoes. Night Shades! Rice is all I can eat and I love rice. I'm taking my rice mesh bag to a restaurant and see if they can boil it for my digestion. They know I have problems with gluten. I'm seeing more restaurants taking charge and introducing gluten free foods. I think we are making progress and strides in Celiac but still, I meet people who don't know what Celiac is and it's complications. Hope you find relief on your journey to good health. 

[Alice-in-Nederland]

Hello everyone! Just wanted to post some updates. My colonoscopy and endoscopy went well and doctor said that everything looked normal. The biopsy results just came and they are normal too! So relieved! No signs of refractory celiac disease. For the past several weeks I have been taking floradix every other day and I added more red meat to my diet. In addition, I stopped eating dairy. My ferritin levels went from 1.9 to 5.7, and hemoglobin from 6.2 to 6.8. That is massive improvement in such short time. In fact I never had such "high" ferritin, the highest I got was 3.2. I am not sure what had the highest impact on my ferritin, but I think excluding dairy. I will continue with this diet and hopefully one day my anemia will be gone I want to thank you all for your advices and support, it really meant a lot! 💗

[trents]

Thanks for the update, Alice. Good news! But you won't be able to represent your community as dairy queen this year.

[MADMOM]

6 hours ago, Alice_in_Nederland said:

Hello everyone! Just wanted to post some updates. My colonoscopy and endoscopy went well and doctor said that everything looked normal. The biopsy results just came and they are normal too! So relieved! No signs of refractory celiac disease. For the past several weeks I have been taking floradix every other day and I added more red meat to my diet. In addition, I stopped eating dairy. My ferritin levels went from 1.9 to 5.7, and hemoglobin from 6.2 to 6.8. That is massive improvement in such short time. In fact I never had such "high" ferritin, the highest I got was 3.2. I am not sure what had the highest impact on my ferritin, but I think excluding dairy. I will continue with this diet and hopefully one day my anemia will be gone I want to thank you all for your advices and support, it really meant a lot! 💗

so good to hear that - i’m gonna go for my 6 month followup since dx to get blood work and check my ferritin levels as well - last checked i believe it was 8.0 so i’m hoping it’s come up and my celiac levels down 🙏🏻❤️

Just now, MADMOM said:

so good to hear that - i’m gonna go for my 6 month followup since dx to get blood work and check my ferritin levels as well - last checked i believe it was 8.0 so i’m hoping it’s come up and my celiac levels down 🙏🏻❤️

how soon after was this followup endoscopy you had since your last?