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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Iron Defency Anemia & Iron Infusions
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6 posts in this topic

I am q 29 year old female who has suffered from Iron Defency Anemia for 2+ years before finally being diagnosed with Celiac two weeks ago. My diagnosis was severe malnutrition due to Celiac. It has effected my B12, calcium and other nutrients as well. My only symptons of Celiac have been my nutritional defencies. No other GI symptoms.

I am slated for a bone density test this week, but my Iron Infusions are not set for another 2 months. I am feeling extremely exhausted, and can barely function, however they dont seem to feel like my iron infusions require fast tracking. Anyone else have such low iron and wait that long for infusions? How long did it take before your body started absorbing iron from food again? (FYI my iron has consistantly been at 1 for the last year + no improvement what so ever with large dose oral iron.)

Edited by KristenS
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I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

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Hi Kristen, I have had Chronic anemia all my life and I have been taking 325 mgs of iron 3 times a day and told to eat liver every night but I kept getting worse and worse. Finally went to a Nuerologist and she said I have Lupus on top of needing a blood transfusion. My GP Doc didn't think I needed anything else done because it was chronic. But I cant get the transfusion until I have my Ablation procedure on Thursday because of Endometriosis, heavy bleeding.

My going gluten-free only helped for a little while, like a year before I started going down hill again.

You've only found out 2 weeks ago. It will take a little while to start feeling better. Try to be as strict as you can, for some it can take just a couple of weeks for some they didn't start feeling better until a year in. It took me 6 months before I started feeling better. Not to mention you may go through withdrawals which will make you feel worse.

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I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

Hi Diana! Thanks for your reply.

My B12 is non exhistant as well. My extreme fatigue didnt really start untill the B12 dropped (I lived with the anemia for almost 2 years before it really took its toll.) Theres quite a few things I am low on, and am waiting for my appointment with my deitition to discuss how to get the rest of my nutrients up.

I wish my iron infusions were happening sooner, but hopefully I can get other things up in the interim and feel a bit better. I havnt had any withdrawl that I can discern, but its hard to tell as my symptons before gluten-free were fatigue, lethargy, irritability, mood swings and forgetfull/foggyness, so in essence I am a bit used to that already! Its hard not having any GI symptoms. I am being super anal retentive about contamination and such, but still fear that I am injesting unknown gluten and harming my body. I dont want to be come a person whos afraid of food!

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Hi KristenS,

I went gluten-free the end of October and life has been a roller coaster ride ever since. One good thing is the anxiety has lessened since maintaining the gluten-free diet (I've been glutened 5-6 times since going gluten-free and that has made it frustrating and difficult).

My hemoglobin was at 7.9 in '09 and I received iron transfusions (10 w/n about a month's time which is ENTIRELY too many!). Really, respect your body and don't try to push them through. That was a mistake. The first infusion was done in the doctor's office and after that, the hospital because my body reacted to the fast drip. Be sure to wait 30 minutes in the doctor's office after your first infusion so that you're not tearing down a freeway and have a reaction (like I did).

The iron infusions did not hold my hemoglobin at a normal rate for long. I changed hematologists and the new doc put me on oral iron which worked better. I stopped taking it in May '12 because I was on anti-vitals for shingles. My Ferritin & hemoglobin both declined.

I just got my lab results back since going gluten-free. My Ferritin is on the uphill climb with no vitamin support which seems to be a miracle.

I have started taking Floravital (liquid iron) from the health food store instead of going back to the Rx which I hope will boost my Ferritin to a desirable level.

I still do not feel well. There have been a few days of glory once I get pretty far past the glutening symptoms but I keep having trouble (w/CC?) and have stopped eating in restaurants or other people's food altogether. This is my plan for the next three months. This is my 11th day in from being glutened for a week (thought I'd go for testing but became too sick to continue with that plan). The longest I've made it is 15 days. Dairy has been eliminated from my diet and will reintroduce in July. It seems to give me symptoms as well. I also stay away from soy, MSG, GMO sources...

There's a great app called NxtNutrio that scans barcodes and tells you if any "offenders" are in the product. I don't know what I would have done without this app quite frankly. My house feels very safe as nothing comes in that isn't scanned (if it has a barcode, that is).

I'm relieved to see the post above saying that it took quite a while to feel better after going gluten-free. Like I said, the anxiety is better but I guess I have quite a ways to go still. With cold & flu season in swing, it's difficult to know how I'm doing.

Hang in there and good luck with your infusions.

Cali

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:) (accidentally posted twice so here's a smiley face for you)
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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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