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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hello!

I'm hoping to get some advice from y'all about iron IV infusions. First, some background:

I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free. 

At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc. 

I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months

I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed.

I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions:

1. Do you think iron IV infusions in the near future would be a reasonable treatment for me?

2. Do you have any advice on how to make them happen?

And if you have any other advice that's relevant to my situation, I'd love to hear it!

 

Thanks so much,

Sofie

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2 hours ago, Sofie K said:

Hello!

I'm hoping to get some advice from y'all about iron IV infusions. First, some background:

I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free. 

At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc. 

I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months

I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed.

I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions:

1. Do you think iron IV infusions in the near future would be a reasonable treatment for me?

2. Do you have any advice on how to make them happen?

And if you have any other advice that's relevant to my situation, I'd love to hear it!

 

Thanks so much,

Sofie

I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free. 

Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  

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Hi Sofie!

Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.  

Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.  

But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).   

Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!  

 

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11 hours ago, Sofie K said:

Hello!

I'm hoping to get some advice from y'all about iron IV infusions. First, some background:

I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free. 

At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc. 

I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months

I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed.

I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions:

1. Do you think iron IV infusions in the near future would be a reasonable treatment for me?

2. Do you have any advice on how to make them happen?

And if you have any other advice that's relevant to my situation, I'd love to hear it!

 

Thanks so much,

Sofie

You say your on a gluten free diet, just a check. Did you get new cookware, check every ingredient, throw out old contaminated cutting boards, jars of condiments, etc. Clean out everything? You first have to decon your house in a way and make sure it is not in anything, including cosmetics and soaps, as these get on your hands and evenutally into your food. Gluten is a protein smaller then a germ, it only takes a tiny bit to start to raise your antibodies, and bleach does not kill it.  Please check hte Newbie 101 form.

Now to address your questions, a whole foods only diet, nothing processes will speed up your healing, changing to making your own foods with simple ingredients (keeping it under say 5-7 things) and nothing processes or not labels gluten free (with certification, none of that made in the same facility) is the best way to heal faster.

Keep a food diary to keep track of what you eat and any other problems, many of us have other food intolerance and allergies crop up. Also make sure your getting a little bit of everything nutrient wise.

Iron and supplements, iron works with vitamin c and b vitamins and some  others. You have to be taking vitamin C with your iron to get your ferratain up. I personally have this issue also. I can give you some suggest some other stuff to help clear up the fog, even if your levels are alright they still help on a gluten free diet. Liquid Health Stress & Energy and Liquid Health Neurological Support 1tbsp each twice a day. I recently changed over to a sublingual iron from trace minerals....takes some getting used to be is supposed to be easier to absorb.  Magnesium, Look into either Natural Vitality calm or Doctors Best in the powder, both these mix in a drink. With calm you have to start off at 1/4tsp and slowly up to the full dose over a week....it can be a bit harsh on the gut if you find this to be then use doctors best. I rotate vitamin C between a pill, and sublingual depending on price myself. I find pricing on the above goes to either LuckyVitamin.com or Amazon as they fluctuate.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

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Hi Sofie,

I'm taken aback by some of the judgmental tones that have come through on this thread. First off, I offer some sympathy. When I was first diagnosed I fell into a major depression because my career, friends and community revolved around craft beer and I was devastated to learn of my diagnosis. During those bouts of depression I gave in and consumed gluten often. Ultimately, to feel your best and stay that way, you will have to give it up for good. But you have your own path and I don't hold and judgment against you for not trying to be gluten free immediately after your diagnosis and in a foreign country.

 

Secondly, my doctor eventually realized I had Celiacs by testing my vitamin levels and realizing I was severely B12 and iron deficient. I was exhausted all the time but I assumed it was my work hours and the fact that I was a terrible sleeper. She recommended I get infusions because it would take time for my intestines to heal and be able to digest supplements. I don't remember how long exactly, but less than a month after my last injection I felt better than I'd felt in years. I finally thought this is how "normal" people must feel! For me, the infusions were life changing and a great motivation to stick with my new gluten-free lifestyle. Of course, if you don't stay gluten-free then your levels will just fall again, but if you can get infusions then I think it's a nice head start. 

Finally, as far as getting your infusions, I'm not sure. I would say contact a hematologist directly (they administer infusions) but I am not sure for insurance reasons if you would need a referral from your GP. It's worth looking into. You could ask the physcian in your school to recommend another doctor who might be willing to help you with this process, or find another doctor yourself.

I hope you feel better soon! Looking back I know I was deficient during my college days as well. With my levels being normal again I can't imagine going through that!

 

 

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Thanks for the advice, everyone! I will definitely try keeping a food diary and look into the various supplements you suggested. Cheezus, I especially appreciated your empathy and suggestion about contacting a hematologist.

While I certainly appreciate all the tips, I do want to respond to the concerns about my gluten-free compliance, because I'm not sure I was clear. When I was diagnosed, I knew almost nothing about the disease and asked the doctor who performed my endoscopy if it would be okay for me to wait to cut out gluten after returning from France. His response was that it wasn't that bad if I waited two months and that he understood my concern about how it would affect me on the trip. As soon as I got back, I began a gluten-free diet and have been gluten-free since. I took the time to do my research and met with a dietician. I'm not intentionally eating any gluten and am doing my best to avoid cross-contamination, but it's challenging living in a house with 5 other students who all eat gluten. I do keep my food separate from theirs and I use new cutting boards, measuring cups/spoons, and cookware. I also made sure my medications, cosmetics, and toiletries are gluten-free. 

I also understand that IV infusions are a temporary boost and are not a way to cheat the system and still eat gluten. I have no intentions of ever going back to eating gluten, but I worry that right now I can't control all of the variables which impact my food and could still have some unknown cross-contamination impeding the healing process. I'm worried about how long it will take for oral supplements to work for me. My B12 and folate levels are normal, I take vitamin C with them, and I  avoid calcium for a couple hours before and after, but still it seems my gut is not currently healed enough to absorb enough iron from my diet or the supplements for my daily needs. I'm afraid that if I don't get healthier soon, I'll have to take a year off from school, which would most likely mean losing the last year of my scholarship. For that reason, I thought IV infusions seemed like a way to potentially give me enough of a boost to keep me from burning out before my intestines are fully healed.

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I understand your desire to get through school.  I still think your best bet is maintaining a strict gluten free diet.  Your hemoglobin is just below range.  That, in my non-medical opinion, is what determines your anemia and not your ferritin levels which are simply your iron stores.  Without enough iron, your hemoglobin levels drop.  

I am always below range due to Thalassemia which is a genetic anemia.  It is amazing how the body can adapt (I still manage/managed marathon and century bike rides with below-range hemoglobin).   My Thals does not impact me greatly.  I probably won’t win an Olympic medal though 😆 .   I also HAD iron-deficiency anemia  due to malabsorption.  My ferritin level was a 2, but more importantly, my hemoglobin was a below a 7.      Several doctors suggested blood transfusions because at that point I was unable to breathe well, I had to constantly rest and I was passing out.  I have to add that I was also going through menopause at the time I was diagnosed with celiac disease.  30 day periods can kill you when you factor in Thals and undiagnosed celiac disease.   

Your PA knows there are risks to any medical procedure.  Did you read about them?  

https://my.clevelandclinic.org/health/articles/intravenous-iron-supplementation

You need to weight the risks versus the benefits.  I think your PA is wise.  Prescribing a gluten free diet to a patient with celiac disease it the best treatment and there is very little risk risk to health — only benefits (unless you live off gluten-free junk food).   If somewhere down the line,  the gluten-free diet is not working for you, (refractory celiac disease), then IV Iron Infusions might be helpful — the benefit would out weigh the risks.  

Your symptoms or issues seem to be more celiac-related. Try hard to find hidden sources of gluten and give yourself time to heal.  My iron-deficiency anemia resolved within a few months of the diet and some iron supplements.  It took me over a year to resolve other symptoms that I did not even know where related to celiac disease.  

You can heal fast.  You can do well in school.  You can do this!  

P.S.  Permanent  Skin Staining is not common but it happens.  My old GP advised against it (too bad he did not know about celiac disease).  

https://defenceupdate.mdanational.com.au/Articles/iron-infusion-skin-staining

 

Edited by cyclinglady

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This is a bit off topic, but consider reaching out to the local celiac community.  There just might be a celiac parent/grandparent who will take you under their wing and provide gluten-free care packages (meals or goodies) for you and some emotional support.  

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I had really bad iron deficient anemia and full blown osteoporosis when I was diagnosed with Celiacs via a biopsy. Staying on a gluten free diet will help solve your problem. I know that being in College it is hard to make the correct Diet choices but you must do it. At the time I was diagnosed, I worked on a college campus and ate in the student cafeteria.  Ask questions about food wherever you go. Look at it like an ongoing research project and you are the subject that you are experimenting with. It gets easier as you learn to read labels and go online to look at menus before going out to eat. Don’t go with the flow even though you are being pressured to do so; chart you own gluten-free path. Your true friends will go with you.

Getting back to your original question about iron infusions, my daughter, who has been tested numerous times for celiac and has always been negative, has iron deficient anemia. She has had 3 iron infusions. Before you go down this path, have your doctor run a blood test to see if you are producing iron in your blood. This was my daughter’s problem as she had was not producing iron.  When the hematologist did a bone biopsy, they found that she had no iron in her bone marrow. There are several types of iron infusions and a hematologist will decide which one to use. This was not cancer but a blood disease/disorder. She is now on the road to recovery. Ask your doctor if your blood is producing iron. If your not producing iron, iron supplements will not be effective. They will also test for other dificency such as vitamin D.

Good luck on your journey and do your research! You are not alone.

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