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.
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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
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
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,
I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band. I lived! Seriously, just wash your hands after handling. Ennis is right. Do not take a big sniff of the boxes in case there is any residual flour. It took days for my van to air out and I did lay some old beach towels to protect my interior as normally, gluten is not allowed!
I just found a nicer compilation of her work, much easier to understand. She also makes the connection between Sleep apnea, vit. D and the gut. Maybe you will enjoy it too:
She mentions autoimmune diseases in general but not Celiacs. But I think it all connects and makes sense.
You are right, no matter how a post is, someone might read it. I did.
i looooove nuts.com. i've already ordered all my nuts, etc, for holiday baking from them. if you order (i think it's 65 bucks) enough, you get free shipping. the nuts are so pretty, not all busted up and stuff. they send you a little sample with your order (this time it was goji berries) also, i got pepitas and sweet rice flour. they have added alot of new products. i highly recommend them