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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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My name is Erin. I'm twenty, going to be twenty-one in September. I'm 5"3 and weigh 132ibs. My mother has celiac disease, and I always knew I had it but I just felt sick if I tried to drink alcohol, or eat too much junk food, so I didn't eat out much.

Within the past month I have found it difficult to breathe, sudden of my heart racing non stop. It gets so bad I feel like I might throw up or pass out. I get confused and can't focus well on anything, and feel well and nothing will calm the fast heart beat. I went to the hospital yesterday and have been a few times recently. They said my RHR was 130, blood test were normal,the lowest my heart rate went to was 100. I haven't been able to sleep I have constant insomnia and fatigue. I'm so tired.

I used to go walking every night and sometimes jog. Now I cannot even get up the stairs to my apartment, without having to come in panting and wheezing and having to lay on the bed. I am practically always laying in bed. I never want to go anywhere because I'm scared to have my heart beat as heavy as it gets. It no matter what all the time usually 90+ heart rate even while I'm laying around not doing excessive anything.

I thought possibly I have gotten Canida from have Celiac disease, so I got Actiiva yogurt, and now I cannot even eat it. I feel nausea eating practicully anything. It makes me very sick, I get dizzy my heart races and I feel very sick. I have trouble eating and if I eat too much or drink too much liquid it seems to sit on my stomach very heavy and I get palpitations. I started taking magnesium because my palpitations were so bad when all of this first started they were like 30 times a day, and would happen so intensively. I'm not sure what to do.. My doctor said my heart rate was fast, but no murmur.

I'm just very scared because I never have a normal resting heart rate. I don't think it's been normal for the past two months. I break out in a full body sweat if I even walk outside, and my heat intolerence is VERY high. I try not to eat much of anything (I've eaten miso soup) but I'm scared to eat anything else because my heart racing as much as it is now, if I eat something I don't want to worsen it. What can I eat? I'm starving :(

I'm scared that this is going to harm my heart before I go back in to the doctors and they figure it out. If anyone has any ideas about it please let me know, any information or any experience of their own I would truly apperciate it more than I can begin to express.

More symptoms I've had are:

Chest pain

Chest tightness

Stabbing feeling in stomach

Sore joints

Headache/Migraine

Tingling all over hands feet and random spots

Severe Nausea

Flaking nails

Cold sweat on hands and feet

heat intolerant

ringing in ears

insomnia

fatigue

slowed walking/moving

arms feel heavy/dead/tired

inability to conprehend

pressure behind left eye

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Oh Honey! I had this, too. Found out I was extremely anemic ( iron deficient) . You do not make the blood cells that carry oxygen properly. This makes your heart beat extra to get Oxygen to your body. It means you breathe hard to try to suck up O2 . When you have Celiac, your intestines can't absorb nutrients as well as a healthy body. I took massive doses of iron , vit c, B 12 to get my blood healthy again. Get your blood tested for vit d, b12 & iron. The other problem could be thyroid, so get that checked with blood tests.

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Welcome Erin! A few things about your post confused me. When you say you had a negative blood test, did they test you for celiac? With your mother having it, it's very likely you have it too. You need to follow up with a heart doctor to rule out any heart condition, but I will tell you that I had some similar symptoms. Mine included chest pain and difficulty breathing rather than just a racing heart beat. I was only 26 when it started and it was scary. Your racing heart beat could also be anxiety if you don't have any heart condition. Many people with celiac or gluten intolerance have anxiety as well.

If you want to go gluten free you can trial the diet right now. Activia is not a good choice for yogurt however. The last time I looked at Activia it said "may contain wheat" on it (I am in the US so it may be different in other countries. If you want to have more testing done for celiac then you should not go gluten free yet (it could make the test results false negatives). However going gluten free will not prevent the doctors from testing for other conditions. Please try to eat something so you don't lose too much weight and end up in the hospital. Try something simple like grilled chicken and steamed vegetables or some plain rice may calm your system. I hope you can figure it out soon and feel free to ask any other questions you have here.

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Oh Honey! I had this, too. Found out I was extremely anemic ( iron deficient) . You do not make the blood cells that carry oxygen properly. This makes your heart beat extra to get Oxygen to your body. It means you breathe hard to try to suck up O2 . When you have Celiac, your intestines can't absorb nutrients as well as a healthy body. I took massive doses of iron , vit c, B 12 to get my blood healthy again. Get your blood tested for vit d, b12 & iron. The other problem could be thyroid, so get that checked with blood tests.

As soon as I read your reply I went and took Vitamin C and Iron, I already took B12. Thank you sooo so much. My mom is also Anemic but no one has told me if I was or not. I feel so awful. I hope that this will at least lighten some of the effects I'm having my chest hurts right now :(

Will this harm my heart? I've been so scared I could have a heart attack and my heart hurts a lot..thank you thank you very much..

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Welcome Erin! A few things about your post confused me. When you say you had a negative blood test, did they test you for celiac? With your mother having it, it's very likely you have it too. You need to follow up with a heart doctor to rule out any heart condition, but I will tell you that I had some similar symptoms. Mine included chest pain and difficulty breathing rather than just a racing heart beat. I was only 26 when it started and it was scary. Your racing heart beat could also be anxiety if you don't have any heart condition. Many people with celiac or gluten intolerance have anxiety as well.

If you want to go gluten free you can trial the diet right now. Activia is not a good choice for yogurt however. The last time I looked at Activia it said "may contain wheat" on it (I am in the US so it may be different in other countries. If you want to have more testing done for celiac then you should not go gluten free yet (it could make the test results false negatives). However going gluten free will not prevent the doctors from testing for other conditions. Please try to eat something so you don't lose too much weight and end up in the hospital. Try something simple like grilled chicken and steamed vegetables or some plain rice may calm your system. I hope you can figure it out soon and feel free to ask any other questions you have here.

They didn't test me for Celiac at the hospital but they are at my doctor. I just went to the hospital last night, but the doctor blood test is Monday. The blood test at the hospital they said normal for anything like heart problem, or any reason for what was happening.

The chest pain is very awful at times, but only if I'm getting too anxious or scared about the palps, or my heart racing. If it gets really intense the heart pain starts, and sometimes without reason.

I didn't think about the activia having wheat in it :( I wont eat it again though. That's for sure. I just thought if I had canida that was harming my body it would cleanse it. I have tried to eat meat and it feels like it may come back up? I feel very full of water, but I'm dehydrated. I will try to get some grilled chicken tonight. Thank you so much for this suggestion. I've been practically sucking down vitamins and liquid for two months!

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Forgot, get vitamin D checked too. Here's the problem. You may not be able to absorb much of the vitamins. Also, when taking iron, it must be by itself. That means no food, vitamins, tea ( just water) at least 1 hour before and 2 hours after. If it bothers your stomach, no dairy or grain. A little banana or apple. What do we need to do to get you tested for Celiac and all the vitamin deficiencies? Do you have insurance? Can your Mom help you? I'll try to help you figure this out. As will other here.

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Forgot, get vitamin D checked too. Here's the problem. You may not be able to absorb much of the vitamins. Also, when taking iron, it must be by itself. That means no food, vitamins, tea ( just water) at least 1 hour before and 2 hours after. If it bothers your stomach, no dairy or grain. A little banana or apple. What do we need to do to get you tested for Celiac and all the vitamin deficiencies? Do you have insurance? Can your Mom help you? I'll try to help you figure this out. As will other here.

I don't think I have Vitamin D at home..I took folic acid, B12, baby asprin.

I have medicaid because I've been epileptic since I was 17. It seems like I have the chest pain and panic attacks every day even with nothing really on my mind.

I'll try to eat something in a couple of hours since I just took an iron a bit ago after you suggested it :)

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As soon as I read your reply I went and took Vitamin C and Iron, I already took B12. Thank you sooo so much. My mom is also Anemic but no one has told me if I was or not. I feel so awful. I hope that this will at least lighten some of the effects I'm having my chest hurts right now :(

Will this harm my heart? I've been so scared I could have a heart attack and my heart hurts a lot..thank you thank you very much..

I can see why you are scared, it must be a horrible feeling. You have been the hospital, which is good. If the pain was from your heart being damaged, they can pick that up using blood tests, which I imagine they looked in to at the start to make sure you weren't having a heart attack. Due to the pain you are in you also may have strained muscles in your chest, which can be very painful.

The state your body is in right now will make you feel much more anxious, which in turn could be making you panicky. I'm not saying it's in your head, just that the original pain puts your body in a state of stress, which can then feed in to eachother. In a young and otherwise healthy person, I don't think that the problems you are having right now will be damaging your heart, but of course you should ask your dr about that and get any testing recommended. There are people who sufffer from panic attacks very frequently where the heart races, and that doesn't damage the muscle.

I have been very low in iron and B12 at points, and my heart could pound and race, I was airless and would gasp and I could hardly climb the stairs. It also put me in a weird disconnected state, which was pretty distressing. I definitely second getting your full iron (that's at least ferratin, circulating iron and your saturation), b12 and folate tested, as that could be part of the problem. Get printouts of the tests and post them here if you dont get a clear answer from the dr. If you are low in b12, get the injections, as it will make you feel better much sooner.

If you aren't gluten free already, I would do that right now, in case this is the start of you reacting to gluten. It can cause some extremely weird reactions in people. Also, make sure you are getting some nutrition, otherwise you will stress your body even more. If you can handle dairy, try a liquid meal replacement, here in Australia I know of ensure and sustagen. You will at least get some nutrition to help you out. Otherwise, have you tried pureeing food and eating small amounts? Or soup? Even a few mouthfulls here and there will help.

Hope you start to feel better soon.

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i was thinking Anemia too- which is very common with Celiac. i really hope you're getting to a doc REAL SOON-

please get in soon- and keep us posted.

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Erin, honey, a couple of quick questions. Does your stomach feel really bloated and distended when your heart races and your have the problems breathing? This sounds like something I get, and it is a food reaction which causes my heart to go haywire. For me it is the pressure from the gas and bloating pressing on my lungs and heart. If you do get the pressure, can you force yourself to burp to relieve it?

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@Mushroom I do get bad pressure under my ribs like fullness. But cannot make myself burp.. Not really had much food lately just maybe the Activia cause a food reaction? I've had the pressure under my ribs for a while causing my heart to race and difficult breathing though, no gasiness right now. Stomach isn't so much distended as just kind of feeling very full and nausea really -_-

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@Mushroom I do get bad pressure under my ribs like fullness. But cannot make myself burp.. Not really had much food lately just maybe the Activia cause a food reaction? I've had the pressure under my ribs for a while causing my heart to race and difficult breathing though, no gasiness right now. Stomach isn't so much distended as just kind of feeling very full and nausea really -_-

Yes, this is what I get, the pressure under the ribs; sometimes it feels like a have on a too-tight bra and someone is pulling it tighter :o You start eating dinner, have a couple of mouthfuls and feel nauseous and can't eat any more because there's no room for anything else. It is all related to what you eat.

Can you go on a very basic diet? Eat things like applesauce, rice, bananas, some white fish, maybe some swiss chard? And drink nothing but water??? Or you could even try some jars of babyfood that have no gluten. Something to get you some nutrition while not making you sick until we can figure out what is doing this to you?

P.S. I take Gas-X - it doesn't help a lot but it does help a bit :)

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Yes, this is what I get, the pressure under the ribs; sometimes it feels like a have on a too-tight bra and someone is pulling it tighter :o You start eating dinner, have a couple of mouthfuls and feel nauseous and can't eat any more because there's no room for anything else. It is all related to what you eat.

Can you go on a very basic diet? Eat things like applesauce, rice, bananas, some white fish, maybe some swiss chard? And drink nothing but water??? Or you could even try some jars of babyfood that have no gluten. Something to get you some nutrition while not making you sick until we can figure out what is doing this to you?

P.S. I take Gas-X - it doesn't help a lot but it does help a bit :)

Ohhh Ohh exactly.. the tightness like someone is pulling something tighter on you about your chest. This is when I thought I had a build up of Canida in my system and got the Activia (haha) :P I am going to make a shopping list. I've been dieing to get fish but around where I live (texas) theres not many places to go and get this for a good price. But I will be on the look out soon now that I have some ideas on what to get! I will also even try the baby food! :)

What did you do to relieve the pressure in your stomache?? Like was it a build up in your body? How long did it last you?..:/ I just thought that by two months this would be gone by now?

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I can see why you are scared, it must be a horrible feeling. You have been the hospital, which is good. If the pain was from your heart being damaged, they can pick that up using blood tests, which I imagine they looked in to at the start to make sure you weren't having a heart attack. Due to the pain you are in you also may have strained muscles in your chest, which can be very painful.

The state your body is in right now will make you feel much more anxious, which in turn could be making you panicky. I'm not saying it's in your head, just that the original pain puts your body in a state of stress, which can then feed in to eachother. In a young and otherwise healthy person, I don't think that the problems you are having right now will be damaging your heart, but of course you should ask your dr about that and get any testing recommended. There are people who sufffer from panic attacks very frequently where the heart races, and that doesn't damage the muscle.

I have been very low in iron and B12 at points, and my heart could pound and race, I was airless and would gasp and I could hardly climb the stairs. It also put me in a weird disconnected state, which was pretty distressing. I definitely second getting your full iron (that's at least ferratin, circulating iron and your saturation), b12 and folate tested, as that could be part of the problem. Get printouts of the tests and post them here if you dont get a clear answer from the dr. If you are low in b12, get the injections, as it will make you feel better much sooner.

If you aren't gluten free already, I would do that right now, in case this is the start of you reacting to gluten. It can cause some extremely weird reactions in people. Also, make sure you are getting some nutrition, otherwise you will stress your body even more. If you can handle dairy, try a liquid meal replacement, here in Australia I know of ensure and sustagen. You will at least get some nutrition to help you out. Otherwise, have you tried pureeing food and eating small amounts? Or soup? Even a few mouthfulls here and there will help.

Hope you start to feel better soon.

I've had like about 2 almost three panic attacks in one day. It's usually suddenly just my heart racing when I try to watch a movie and relax, and then I can't control it and my chest hurts. I'm really glad you told me it wont be damaging my heart :) I was so worried about that. I've thought about it ever since I noticed my irregularity of my heart. How did yours go? Have you already begun treatment or do you still have these feelings?

I took Iron and I feel better, I kind of took it quite late so next time I will try to take it earlier. I try to be pretty cautious about those things. I know it's silly maybe I'm just a little scared about how no doctor can tell me what's wrong with me. But an hour or two after taking the iron pill my heart rate has relaxed. It has gone from being the normal of 100+ to now maybe in the 60 range even?!!??!?! I'm so happy and excited I had iron at my house this whole time and I had no idea it could help my heart.. I was so shocked I was almost weirded out that it was so low. I was like "So low is this even normal?!" Because it's been so high for so long. I can't say how much of a difference I feel.

I didn't feel like I was getting oxygen at all to even when I was breathing (the air would even feel hot even if it wasnt?) and I would panic at that, and now when I breath I feel fine! And I don't feel as disoriented. Maybe still hard to walk, but maybe my braincells are trying to recooperate after the loss of all the air! if I have any left now! ;D

I ate soup earlier I had Miso soup that's what I've been eating. I'm going to try some Fish and baby food, and some steamed vegs that everyone sugested. I don't mind going completely gluten free. I don't even like bread or anything. Just every time I got something, even a drink I would get really sick. So I will probably be eating mainly fish and vegs from now on! :)

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Hi Erin,

You should get your thyroid checked for Hashimotos' thyroiditis antibodies, and also check for Grave's disease. Hashimotos' thyroiditis is a condition where the body makes antibodies to the thyroid and attacks it. Hashimoto's can cause symptoms of Grave's disease (hyper-thyroid) and also hypo-thyroid symptoms (low thyroid). People with celiac disesae tend to get other auto-immune diseases more often. including Hashi's. Hashimoto's damages the thyroid but sometimes people on here have reported their Hashimoto's symptoms get a little better on the gluten-free diet. Not always though.

It might help to get some sub-lingual B-12. That's usually either a liquid or a small pill that dissolves under the tongue. Make sure to check all you vitamins for gluten-free.

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My name is Erin. I'm twenty, going to be twenty-one in September. I'm 5"3 and weigh 132ibs. My mother has celiac disease, and I always knew I had it but I just felt sick if I tried to drink alcohol, or eat too much junk food, so I didn't eat out much.

Does this mean you are still eating gluten and just avoiding junk food and alcohol?

If you are still eating gluten when you get done with celiac screening stop. The symptoms you are describing sound like gluten reactions. The problems with balance and the difficulty walking could be gluten ataxia. Even if your celiac screening is negative you would be wise IMHO to be strictly gluten free.

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Thanks for adding those other symptoms to your first post, Erin. You say you know you have celiac; I guess I just assumed you were eating as a celiac, but maybe not? Do give us the answer to that - you said you were eating only miso soup??? Have you also been eating gluten products?

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When I took my dad to a heart Arrhythmia specialist at Mayo Clinic we were told the best way to help a fast beating heart was to drink a sports drink like Gatorade. Since I have the same problem of my heart racing at times I found this worked for me. Another note, some people find they have seizures when eating gluten.

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I've had like about 2 almost three panic attacks in one day. It's usually suddenly just my heart racing when I try to watch a movie and relax, and then I can't control it and my chest hurts. I'm really glad you told me it wont be damaging my heart :) I was so worried about that. I've thought about it ever since I noticed my irregularity of my heart. How did yours go? Have you already begun treatment or do you still have these feelings?

I took Iron and I feel better, I kind of took it quite late so next time I will try to take it earlier. I try to be pretty cautious about those things. I know it's silly maybe I'm just a little scared about how no doctor can tell me what's wrong with me. But an hour or two after taking the iron pill my heart rate has relaxed. It has gone from being the normal of 100+ to now maybe in the 60 range even?!!??!?! I'm so happy and excited I had iron at my house this whole time and I had no idea it could help my heart.. I was so shocked I was almost weirded out that it was so low. I was like "So low is this even normal?!" Because it's been so high for so long. I can't say how much of a difference I feel.

I didn't feel like I was getting oxygen at all to even when I was breathing (the air would even feel hot even if it wasnt?) and I would panic at that, and now when I breath I feel fine! And I don't feel as disoriented. Maybe still hard to walk, but maybe my braincells are trying to recooperate after the loss of all the air! if I have any left now! ;D

I ate soup earlier I had Miso soup that's what I've been eating. I'm going to try some Fish and baby food, and some steamed vegs that everyone sugested. I don't mind going completely gluten free. I don't even like bread or anything. Just every time I got something, even a drink I would get really sick. So I will probably be eating mainly fish and vegs from now on! :)

That's great that you've had improvements from the iron. I had a rollercoaster of low iron and B12 for about a year, until I got a good GP. We were monitoroing both at 2-3 week intervals for a while, as my levels would just totally crash. It got to the point where i could walk in there and say I feel low in iron, and she would just inject me, as she knew that I could identify them 100%.

I got iron injections, which is quite uncommon, but I just can't digest the iron pills. Iron injections obviously help quicker than the pills, I think when I was at my worst I had weekly iron and B12 injections for about 2 months, and after about 1 month the breathlessness and pounding heart went away. I never had panic attacks luckily, but the airless feeling is pretty distressing!

OH!! I just remembered something! A couple of months ago I got really breathless a lot, it was worse than usual and my iron/b12 wasn't that low. It seems a bit nuts but I stopped taking a medication (the pill) and i noticed a couple of days later that my entire stomach and diaphram had been totally locked up. I only realised when it was better. The breathlessness also went away, it turns out I had been cramped up solid, and so was breathing really shallowly, causing the airless feeling. That ties in with some of the other posters who have mentioned stomach pain and cramping leading to the pains in the chest.

When you pay attention to how you are breathing, are you moving your shoulders and the tops of your ribs, or can you feel the bottom of your ribcage move too? Often when people get panicky they can start breathing shallowly, which can bring on hyperventilation. If you aren't already, it's a great idea to spend some time practising breathing deeply and slowly. It helps get your oxygen levels up too.

Hopefully with iron and B12, and a easy to digest diet, you may find a way to reduce the pain you are in, and the stress with it. It's a very primal thing to freak out when you feel you can't breathe, but if you know what's going on it should help to break the panic response that kicks in. If you can afford it, psychologists have a lot of techniques to help manage panic attacks, it could be a good option if they are happening frequently or stopping you from doing things.

I think the gluten-free diet is a great idea, as it may be the villain behind any low nutrient levels and possible pain from the stomach? I definietly recommend keeping regular food and symtpom diaries, it helps so much to know whether things are improving, or to identify triggers for problems.

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Sometimes epilepsy is just caused by gluten, by the way.

Can you list all the tests you had? Please?

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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!    
    • 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  
    • 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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