Iron infusions, feedback?

[Chickennugget88]

Hi all. I'm new here 😁

Diagnosed with celiacs at 22 but have been anemic since i was 5 (wish i was kidding). My iron levels hover between 5 and 12, the highest it has ever ever been was a 25 and i was utterly amazed. Anyhow. I was an absolute moron and because i was asymptomatic and had zero signs of celiacs, i kept living life like a normal person and ignored the diagnosis for another 11 years.

I'm now 34 and don't absorb iron or much of anything from what i eat. I've been fully gluten free for over a year now and take ferrograd c tablets daily (which have something like 300mcg of iron or whatever the measurement is, my brain is foggy on that), which my body spits back out and absorbs nothing of.

the doctor told me back over a year ago that if i didn't go gluten free, i would die. Again, wish i was kidding. My iron was at a 3 back then and yeah, it was bad. I could barely breathe and stay awake. So i was told go gluten free, take the iron tablets religiously and come back in three months.

then i got covid, yada yada, what fun that was. Anyhow. The three months turned into 9 and my energy levels have dropped right off and my heart skips a beat every hour or so. Typical anemia stuff. I'm booked in for my first transfusion next month and i don't know what to do, what to expect.

 

Any tips? Any feedback on what to expect and what to do or what not to do?

[trents]

4 hours ago, Chickennugget88 said:

Hi all. I'm new here 😁

Diagnosed with celiacs at 22 but have been anemic since i was 5 (wish i was kidding). My iron levels hover between 5 and 12, the highest it has ever ever been was a 25 and i was utterly amazed. Anyhow. I was an absolute moron and because i was asymptomatic and had zero signs of celiacs, i kept living life like a normal person and ignored the diagnosis for another 11 years.

I'm now 34 and don't absorb iron or much of anything from what i eat. I've been fully gluten free for over a year now and take ferrograd c tablets daily (which have something like 300mcg of iron or whatever the measurement is, my brain is foggy on that), which my body spits back out and absorbs nothing of.

the doctor told me back over a year ago that if i didn't go gluten free, i would die. Again, wish i was kidding. My iron was at a 3 back then and yeah, it was bad. I could barely breathe and stay awake. So i was told go gluten free, take the iron tablets religiously and come back in three months.

then i got covid, yada yada, what fun that was. Anyhow. The three months turned into 9 and my energy levels have dropped right off and my heart skips a beat every hour or so. Typical anemia stuff. I'm booked in for my first transfusion next month and i don't know what to do, what to expect.

 

Any tips? Any feedback on what to expect and what to do or what not to do?

Welcome to the forum, Chickenugget88!

Iron infusion should make you feel better very quickly. Have you been checked for pernicious anemia? This is a particular kind of anemia that is caused by the inability of the body to assimilate vitamin B12, B12 being necessary in turn for the assimilation of iron.

Are you eating gluten free yet? You never actually stated in your post that you have begun the gluten free diet. Most beginners don't have a very incomplete idea of what eating gluten free involves. They manage to eat lower gluten but not gluten free because they don't understand how and where gluten is tucked away in processed foods by the food companies and they don't understand about cross contamination issues. The biggest single sabotager of eating gluten free is eating out, since you have little control of how food is prepared and handled back in the kitchen. You can order gluten free food in a restaurant but if they cook it together with gluten food it gets cross-contaminated ("CC" for short).  Perhaps this might help: 

I would also recommend to start taking an adult multivitamin, sublingual B12, a high potency B complex, 5000IU of D3 and magnesium glycinate. Make sure they are all gluten-free. Wheat starch can be used as a filler in pills. Costco's Kirkland and Nature Made line of vitamins and supplements are a good choice. If they are gluten free, and most of them are, it will be clearly labeled such on the bottle.

[knitty kitty]

Welcome, @Chickennugget88!

Being checked for nutritional deficiencies is part of proper follow up care for Celiac people.  

Our bodies need B12 Cobalamine, B2 Riboflavin, B6 Pyridoxine, and B9 Folate to make red blood cells.  Iron is absorbed better if taken with Vitamin C.  Thiamine B1 and Niacin B3 are also needed.  So a good B Complex supplement with all eight essential B vitamins would be beneficial. 

Lack of energy, fatigue, tachycardia (skipping beats) and brain fog are symptoms of Thiamine B1 deficiency.  The World Health Organization recommends taking Thiamine Hydrochloride 500-1500 mg per day for several days and see if there's improvement.  I had improvement within hours.  Thiamine is water soluble and nontoxic.  Other forms of Thiamine that help are Benfotiamine and Allithiamine, fat soluble forms that can get into cells easily.  Magnesium works with Thiamine, so a magnesium citrate supplement will help, too.

We need more Thiamine when we are ill, so your bout with Covid may have left you with insufficient Thiamine.

Vitamin D acts as a hormone.  Deficiency in Vitamin D can mess up your cycles.  Vitamin A will help with anemia.  

Stay away from processed foods and eat veggies and meat.  

Keep us posted on your progress!

[Chickennugget88]

Hi all,

I do eat gluten free. I call it "cave man" eating because i eat meat, veggies, fruit and rice and use spices to flavour it. I'm in Australia and we have very strict gluten free labelling. I did alot of research and know about CC and hidden gluteny stuff (thickeners, additives, etc) and anytime I'm unsure, i just google it and check multiple sources to be safe. Eating out is near impossible for me, it's very hard to find anything that is certified gluten free by the Australian celiac society. Thankfully i have a certified gluten free butcher and bakery within minutes of home.

I do take multivitamins, it's nature's own brand but i can be a bit lax with remembering to take it. Schedules and routines are my kryptonite and i struggle to stick to them at the best of times 😓

[LCAnacortes]

I am so sorry that you have had such a rough time.  I was having all kinds of issues but then found we have celiac in the family and that explained a lot of the symptoms I had. In addition to multiple vitamins I'm taking a B complex, Niacin, Thiamin, Magnesium Glycinate, D3 and I'm finally getting some relief. Consider taking other supplements too. I really hope that you feel better soon.  I take my pills with lunch - attach them to a meal and hopefully you will remember to take them.  We are your family here. Reach out if you need anything. 

[Bev in Milw]

It takes about 4 months to build new red blood cells and Vitamin B12is necessary to the process. B12 occurs naturally in animal-based food products so those who consume little or are vegan need to supplement.  It is absorbed at the bottom on the small intestine where ph is lowest and requires an “intrinsic factor” for utilization. The process get more complicated when celiac damage impairs normal absorption.   Taking a “sublingual” (under-the-tingue) form of B12 skips the GI process entirely and goes  directly into your circulatory system.

Walmart’s Spring Valley’s sublingual B 12 is similar to one previous available from Rexall.  It comes in 500 mg  (200 ct) and 2,500 mg (50 ct), which are comparably priced.  However, since this is a water-solute vitamin with excess eliminated from body within 6-8 hours, the lower dose taken multiple times a day (if needed) should result in greater absorption.  
 Anemia can also result when blood cells wear out sooner than they can be replaced.  A common cause is oxidative stress in which various compounds, a long list including nitrates in  produce which occur naturally in varying amounts, taken up from the soil. These bind to the heme- in hemoglobin to form methemoglobin which cannot carry oxygen. (Measuring levels of met-Hgb is done by pulmonary specialist who test arterial blood gases. Traditional lab just takes blood from veins, not arteries.) 
 The reduction process to free the heme- to carry oxygen again requires an niacin-based enzyme process and time. 
   Red blood cells are programmed to undergo a set number of these conversions which determines their lifespan. When Met-Hgb level is Normal, = < 3%, the lifespan of a red blood cell is 4 months, matching  time needed to build its replacement .  As the % of met-Hgb rises, anemia escalates  as an increasing number of red blood cells reach their natural end while production of new cells remains on the same 4 month schedule. 
   I had to figure this out for myself. After suffering from blisters on feet & hands, fatigue,  & other annnoyancesthat defied a diagnosis , I discovered that I’d been poisoning myself for 5 + year with potassium nitrate, found  in sensitivity protection toothpaste. Ever after I stopped using it I remained extremely sensitive to all forms of nitrates, even the 2 mg of thiamin mono-nitrate in my vitamin !  Most problematic were those that occurr naturally in roots, stems, most leaves of vegetables & even slow growing  fruits.  Avoiding exposure limited blistering but  didn’t solve underlying cause and some areas had remained raw for years 
   In fall of 2020 during Covid recovery, I spent time reading up on the role of water soluble vitamins.  While adequate thiamine is essential to the production of energy in every living creature, niacin is also an essential nutrient.  Historically, pandemics caused by widespread niacin deficiencies (pelegra) caused symptoms know as the  3 D-s …dermatitis, dementia & diarrhea., that led to deaths 
  I always take thiamine HCl during fever because body uses more to raises temp. After Covid, however, I decided to add a low dose of niacin (25 mg -ish, breaking 100 mg tabs in 1/4-s) to see if  it would help wit lingering gi issues.  While It did seem to help with that, I was surprised to find that lingering blisters were finally healing after nearly 20 years!  
  Our bodies get rid of toxins via the pores in our skin. These are most plentiful on our palms and soles of our feet and where my blisters began and failed to heal.  Niacin is an essential part of the reduction process that reduces and reverses oxidative reactions,  thus reducing the amount of toxins the  the body has to eliminate.
   Because my initial exposure to potassium nitrate was chronic, it seems likely any niacin reserves were  depleted and led some level of deficiency that hadn’t resolved on my gluten-free diet. 
  Since adding the extra bit of niacin, I’m not nearly as sensitive to nitrates in veggies although the high nitate levels in a minimal amount of potato starch still causes.a noticeable reaction. ( And guten-free without potato starch definitely limits  options.)     
   Having  been dx/gluten-free for 40+ years & even will all those extra years, I believe my body is probably functioning as close to normal as it ever has in the past. Definitely an unexpected surprise! 

Bev in Milwaukee
Milwaukee Celiac- Spre Crew

Mr Roger’ s School of Medicine—:”“Everything works together because you’re all one piece!”

 

 

 

 

[Posterboy]

On 8/11/2022 at 5:43 PM, Bev in Milw said:

In fall of 2020 during Covid recovery, I spent time reading up on the role of water soluble vitamins.  While adequate thiamine is essential to the production of energy in every living creature, niacin is also an essential nutrient.  Historically, pandemics caused by widespread niacin deficiencies (pelegra) caused symptoms know as the  3 D-s …dermatitis, dementia & diarrhea., that led to deaths 
  I always take thiamine HCl during fever because body uses more to raises temp. After Covid, however, I decided to add a low dose of niacin (25 mg -ish, breaking 100 mg tabs in 1/4-s) to see if  it would help wit lingering gi issues.  While It did seem to help with that, I was surprised to find that lingering blisters were finally healing after nearly 20 years!  

Bev In MilW,

I have been arguing for years literally that the 3rd Phase of Celiac disease is really Pellagra in disguise and your feedback (few words) might do more good than my many words!

Here is the research that shows exactly what you been experiencing!

https://www.jidonline.org/article/S0022-202X(15)50482-X/pdf

And this research on  how Niacinamide can be used to treat DH in Celiac's...

https://pubmed.ncbi.nlm.nih.gov/30390734/

See also this article which I think you will enjoy reading after everything you have been through for the last 20+ years.

(For some reason I can't get the article to post the link) search for "A Differential Diagnosis: How Pellagra Can be Confused with Celiac Disease" and the article should come in google...

I hope this is helpful but it not medical advice!

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

Posterboy by the grace of God,

[Aimeeball]

Ever had a deeper endoscopy? I was extremely anemic and found out I was celiac, but also found rare duodenal cancer which is usually found too late. 

But back to the infusions. I also had iron levels around 3. After the first one, I felt AMAZING!  I believe I did 4 infusions. Man, I couldn't believe the difference it made in my energy level!  

[Beverage]

Have you been checked for other conditions like Thalassemia? It's a genetic anemia, common in Mediterranean area descendants, Portuguese,  Italians,  and more. If something like that, you don't absorb iron and iron supplementation must be avoided or it can harm liver, etc. I didn't get diagnosed until I was 19, after docs always told me to take iron, but it never helped.