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
Positive biopsy and blood work? It sure sounds like your doctor made the right diagnosis.
Let me tell you my story. Diagnosed after going for a routine colonoscopy because I am over 50. GI saw my chart and noted that I was anemic. I have a genetic anemia and I was iron deficient as well. I lived like that my entire life. But my wise GI ordered a celiac blood panel and it was considered mildly positive. So, he ordered an endoscopy to my colonoscopy.
I had been dairy free since I was young. Was told that I had an allergy. I had not any GI issues with gluten. I was an avid baker. I had nut issues and also mushroom, garlic/onion, and egg intolerances. I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.
I was shocked. My husband had been gluten free for 12 years prior to my diagnosis. There is no way both of us would have gluten issues. But...the tests did not lie. My iron deficiency anemia resolved within months of my going gluten free. Two months into the diagnosis, I fractured my back doing NOTHING! I have osteoporosis as a results of having celiac disease.
Grief is completely understandable. Denial is a part of grieving. But the proof will be in follow-up blood tests and how you feel.
So, now I can eat nuts (not almonds), eggs (two a day every single) and dairy. Yes, ice cream! I have yet to get back garlic and mushrooms, but I can live with that.
I have Hashimoto’s too. . Once you have one autoimmune disorder, you can develop more. The gluten-free diet may help, not only your celiac disease, but your UC issues as well.
Try the diet. I think you will be pleasantly surprised!
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!
Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac.
I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.
I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
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,