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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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KristenS

Iron Defency Anemia & Iron Infusions

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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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