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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.

So Tired All The Time
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17 posts in this topic

I was diagnosed with celiac through a blood test in October and have been gluten free for over a month now. At first I went through withdrawal which was tough but then I started feeling better. I must have taken a turn for the worst because the past two weeks I have been SO low on energy it's hard to function. I work full time plus run a part-time business. I am overwhelmed and getting more depressed by the day. I had blood work done last week which showed an Iron and vit D deficiency so I just started supplements and am hoping they will help. I think I have enough carbs in my diet because I am not constantly hungry like I was in the beginning. I just turned 24 and I feel like i'm in my ninety's and senial - I am so tired I can't think straight. I don't want to move out of bed, and when I do it's literally painful and it takes hours to feel even remotely awake and a few hours later I am back to being completely exhausted. I feel like it is abnormal for me to feel worse after weeks of being on the diet - has anyone else experienced this? Aside from the vitamin supplements is there any advice on how to gain some energy in the near future?

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I was diagnosed with celiac through a blood test in October and have been gluten free for over a month now. At first I went through withdrawal which was tough but then I started feeling better. I must have taken a turn for the worst because the past two weeks I have been SO low on energy it's hard to function. I work full time plus run a part-time business. I am overwhelmed and getting more depressed by the day. I had blood work done last week which showed an Iron and vit D deficiency so I just started supplements and am hoping they will help. I think I have enough carbs in my diet because I am not constantly hungry like I was in the beginning. I just turned 24 and I feel like i'm in my ninety's and senial - I am so tired I can't think straight. I don't want to move out of bed, and when I do it's literally painful and it takes hours to feel even remotely awake and a few hours later I am back to being completely exhausted. I feel like it is abnormal for me to feel worse after weeks of being on the diet - has anyone else experienced this? Aside from the vitamin supplements is there any advice on how to gain some energy in the near future?

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When The doctor told me that I was anemic, I switched from being vegetarian to eating ridicules amounts of red meat and taking iron pills. This didn't help my iron deficiency and it was so bad that the doctor insisted that I was not being honest about eating the red meat. Finally the doctor tested me for celiac disease, and the positive result indicated that the problem was that my damaged intestine would not allow any of the iron to be absorbed into my system. This could be what is happening with you.

I switched to a liquid iron and vitamin formula and it worked better for me that the pills. IMPORTANT - Make sure that you get the gluten-free kind. It helped but it was still not enough and, finally the doctor gave me an iron transfusion and I felt great. My recovery took over a year, but you are about half my age so you should heal a lot faster. I know that it is hard, but just be patient with yourself and give yourself time to heal. Take the liquid iron formula and if that doesn't work, ask for the iron transfusion.

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After 6 months of iron supps my dr suggested liquid iron. She said that Celiacs often have trouble absorbing the nutrients and liquid iron is absorbed faster. It does work - just such a very very slow process. Slowly you notice that you aren;t sleeping quite as many hours a day! Just read the labels. I grabbed a bottle of liquid iron the other day only to be stopped by the clerk who showed me that the company puts out both gluten-free and gluten kinds - the only difference was the color of the writing on the box and the ingredient label!!

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Can any of you who have had success with this liquid iron please post or message me the name of the brand you use? Thanks.

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I am 27 been on the diet 3 months while i feel a big improvement especially in gi problems i do think i may have other intolerances as if i eat or drink something rough on my stoamch such as coffee,tomato sauce etc i get extremely tired and foggy headed within an hour and it will last hours which is an improvement from lasting days.I feel when going out to stores sometimes faint and lightheaded i am not sure if it is low blood pressure or sugar, i did have a test for diabetes and i was fine ans never had a problem with blood pressure,i swear this is such a mystery disease also i am not anemic althought i wish i was as it would give some light to my extreme fatigue:( Good luck with time it will get easier!

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I felt like that the first 5 months & then they finally checked my iron. I now take liquid iron rather than the pills as it absorbed into the system better. You may want to have some blood tests run.

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It might help you to avoid processed foods until you heal. Some of us can't tolerate the small amounts of gluten that they contain due to cc.

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It might help you to avoid processed foods until you heal. Some of us can't tolerate the small amounts of gluten that they contain due to cc.

I am 25 years old, so I totally know how you feel as far as being tired and frustrated. I would suggest an (Company Name Removed - They Spammed This Forum and are Banned) test, which test for over 500+ different food sensitivities. I was diagnosed first with celiac, then when I wasn't getting any better after months and months they did the (Company Name Removed - They Spammed This Forum and are Banned) test. It showed I had many many other food sensitivities. After eliminating those I felt much better. I still struggle with fatigue and "brain fog" to this day. Drinking enough water can really help. I would also suggest that your doc check your stool for different parasites and a possible yeast overgrowth as those can mimic celiac symptoms. Hope this helps and I hope that you feel better soon!

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Everything everyone has suggested is great advice, I also just wanted to add (as if you don't already know, I'm sure you do) to make sure you haven't been getting cross contaminated or accidentally been eating trace amounts of gluten. Wash hands thoroughly before eating, rinse off utensils and plates before eating, check all labels and if you arent 100% sure dont eat eat it, etc. I just had to mention it just in case, even though you are probably well aware.

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Sorry if my persistence is annoying, but what is the name of the liquid iron that you are taking that you have found to work for you? If you can't post it, send me a PM. Thanks.

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I take Floradix Floravital Iron & Herbs liquid. It is at the health food store. be careful as there are two that look exactly the same, both made by the same complany, Salus. One is marked Gluten free, the other is not & has wheat. After 6 weeks I can stay awake later than 8:00! lol

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Just want to add that if you're low in Manganese, you can't utilize the iron....and will still feel tired. The best type of Manganese to take is the chelated form.

Also, although Floradix is a very good liquid iron, it is very LOW in the amount of iron it delivers. If you don't feel better soon, ask your doctor for intravenous iron infusions. These infusions are usually weekly for four weeks, and then you'll feel great for at least two months.

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So, for all of you it actually showed on your blood panels that ya'll were low in iron.

Also, the maganese comes out under that name in your blood panel or does it show up under a different name?

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I'll throw my 2c worth in. I notice my energy drops significantly if I forget to take Sublingual B complex 2x a day. I have given it to my husband and kids and they now come clamoring for it whenever they start feeling tired in the middle of the day or didn't get enough sleep. The stuff's amazing. I buy one that costs about $6 from Walmart (Spring Valley?) It's gluten-free and tastes nice and there are a lot of doses with that dropper bottle :)

Hope you feel better soon,

FooGirlsMom

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I've also been feeling really tired - usually I'm ok for a few days then feel tired and horrible for a few days. I think it happens when I over exert myself. I've been gluten free for about 7 weeks now. I've definitely seen some improvements, but it is very slow and frustrating!

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It took about 3 months for me to feel better. One day I just realized that I wasn't going to bed at 8:00 any more. Can really tell the difference if I forget the iron more than once. Hope it helps you

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    • Thanks so much for the information. I tried Dynasty jasmine rice which was a recommendation from a sensitive individual on here. The post I believe was from 2009 so there's plenty of time for practices to have changed. I only ask this here again for updated information as I tried the Dynasty brand and got sick. I do not have Celiac disease (according to an Endoscopy) however, I have been gluten-free for 2 years and only ate a cookie or a donut maybe a few times a month for a year and a half before I was tested. I actually like going without gluten as I get less low blood sugar attacks and rarely ever get migraines. Not to mention, before I had the Endoscopy I was fasting for 2 days with no food or drink while I received other tests while I was in the hospital. I also got a colonoscopy at the same time so I had to clear my system out completely. My doctor believes I have a non-Celiac gluten sensitivity due to my symptoms after ingesting gluten. I was diagnosed with Dysbiosis so it could be my body lacks the correct bacteria to break down gluten. I have several other food intolerances including dairy and oats which many facilities process along with rice. 
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