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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.

Anemia/vitamin Deficiency Surprise
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6 posts in this topic

I was feeling really good after a week of bed rest and massive vitamin intake. Then, I returned to work last week and all that energy depleted. I feel like I'm back at square one. I gave up trying to focus so I went to bed to lay down. Moderate muscle and bone aches, brain fog, and extreme exhaustion. I know I didn't have any gluten so I think I'm doing more than I should at this point. This is the part I hate the most! How long did it take before you started feeling semi-normal?

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Work didn't happen today, :-( the pain got worse especially in my legs and feet. I thought my feet were going to break when I stood up. Ugh! I hate Celiac Disease!

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I'm sorry. I am 5 months in and still learning. It's a process of learning and adjustment. Learn, adjust, learn, adjust, learn, adjust. I've had to forgive myself for not rising to my level of expectations and then forgive myself for having too high of expectations. Many veterans here feel very good and it took quite a few of them a long time. One person on here who was 3 1/2 months in posted her doctor's response and that helped me to adjust my expectations: http://www.celiac.com/gluten-free/topic/100497-your-bowels-are-like-berlin-post-war/?hl=%2Bberlin#entry858877

I'm about to dig into the Paleo diet. So far, I'm sensitive to gluten, nuts, dairy, corn & soy. If I had it to do all over again, I would have started with the elimination diet (or Paleo) from the git-go. I am where I am though and my husband says he sees positive changes from an observer's point of view.

Hang in there and go easy on yourself.

Cali

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Yes, trial and error! I'm sticking to fresh vegetables, fruit and beans for the time being. It's easier to drink my meals than eat them. I manage one solid meal a day. I remain optimistic :-)

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I have suffered with colon problems all my life. I get very sick and end up with diarrhea. I now am deficient in Vit B12, Vit D and have been iron deficient anemia. It was so severe they was going to give me blood transfusions, but I opted for the iron infusion.

 

I have had the blood test ran for Celiac's and it came back negative. I'm going to go gluten free to see if that helps.

 

This is awful to have because when you have the attacks you are restricted to home close to the bathroom and wears me out.

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it can take some time before you feel great, but i suspect you'll start feeling better a little at a time. You mentioned taking vitamins, one thing we learned is that deficiency of B vitamins is common & can be related to some of your symptoms, but can be really hard for the intestines to absorb..we found that B vitamins in disolvable tablet forms work, they disolve under your tongue and get absorbed right away. Also, be sure your vitamins are gluten-free too, many are not!

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    • Itchy skin
      Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
    • Where do I start??
      I will be going for my endoscopy on Februry 19. The other day in reading about Celiacs, I read about the strange rashes often associated with celieacs and gluten intolerrance. About six months ago, a rash exactly as you describe showed up on the backs of my knees. The doctor didn't know what it was, hought maybe it was ringworm, and gave me some topical medicine, and the spots did go away with time. However, I've had the same type of spots show up in other places occassionally. I know for a fact they were not ringworm.
    • Advice on reintroducing dairy.
      I can!   Start with hard cheeses, then yogurt/butter, soft cheeses and finally milk/cream.  Start slowly and build.  Give yourself time to get your body to release the enzymes necessary to digest lactose.  Certified gluten-free enzymes for lactose can help the transition.  Lactose free milk and ice cream are helpful too.  Remember, that genetically some of us are predisposed to being lactose intolerant no matter what (e.g. aging, race).   I wish you success!      
    • Gluten free diet, positive celiac screen...what should I eat now?
      Here is a link that explains why you should get tested (completely) for celiac disease: https://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/ As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!   Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.   Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  
    • Itchy skin
      I have DH and itchy skin is a symptom.     Your Dermatologist could write a script for Dapsone, provided you're not allergic to Sulphur.     Expect blood labs to go with using Dapsone.      You need to study everything that goes in your mouth for possible gluten content, including all meds.
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