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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

A Relative Is Diagnosed Celiac- Won't Go Gluten-Free
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29 posts in this topic

My husband got really sick like that before he found out. So sick that he would do anything to feel better. I completely in my mind believe that he would have died within a week if they had not discovered the results of the blood test when they did. He was told to go gluten free before they even confirmed with thd endoscopy. It may take her hitting rock bottom for her to do it unfortunately. Hopefully it won't be too late by that point.

My son also has it. He had no symptoms or at least noticable ones- but after the biopsy we found out the doctor thinks he has had it for at least three years. We only had hom checked because of my husband. We have encouraged other family members to get checked but they won't. My mother in law recently found out that she has a rare form of rectal melanoma, and I can't help but wonder if she too has it( melanoma is a risk with untreated celiac disease). I just think too many people think if they don't feel bad then nothing is wrong.... Trouble is they don't realize that they don't feel that great!

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Since being diagnosed I've told me immediate family they should get tested too. I'm not so worried on my mom's side but I think my dad and brother should get tested because my dad's sisters both have gi problems - one aunt has crohn's and IBS and the other has a whole bunch of food sensitivities - neither has been diagnosed celiac but still. My brother refuses to get tested because he doesn't have any symptoms. I've told him that you can have celiac without symptoms, but he just doesn't want to know. I get it...if you don't feel sick then it's probably way harder to cut out gluten, but I also don't want him to get osteoporosis and cancer :S. I don't think he has it, but it's not hard to get a blood test.

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This might be totally off track... but is there anyway she could be suffering from some other issues in addition to celiac? Such as bulimia? It could explain the vomiting behaviors and if she went gluten free and continued to have symptoms it would mean admitting other issues. 

 

It's rare, but ignoring medical diagnosis to cover up undesirable or "forbidden" behaviors does happen. For example, Lance Armstrong used his cancer to cover up the high levels of HCG when he was drug tested. Not entirely the same, but it's a high profile example of this type of behavior. 

 

And again, it may be completely off track and I don't know your family or your situation, it's just a thought.

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If she's diagnosed with it and she's not doing anything about it, you can't be gluten free for her. In my family, me even mentioning to get fully tested results in eye rolling or a burst of anger. I can send trustworthy medical info, but that's about it.

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    • So to repeat, you will have to do a gluten challenge which is 12 weeks of eating 1 slice of bread per day for the blood tests or 2 weeks of gluten eating for an endoscopy.
    • I'm celiac for less than 3 months.   I'm starting to get concern about getting all the necessary vitamins being gluten free.   Recently my joint pain has increased, pulsating pain in my head, and sore areas in legs and neck have started recently.  Or course, anxiety too. I'm currently taking a Centrum Men's Multivitamin.  Here's what in it: Vitamin A 3,500 IU (29 % as Beta - Carotene)  70%
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      Vitamin D 1,000 IU  250%
      Vitamin E 45IU  150%
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      Riboflavin 1.3mg  76%
      Niacin 16mg  80%
      Vitamin B6 2mg  100%
      Folic Acid 200 mcg  50%
      Vitamin B 126mcg  100%
      Biotin 40mcg  13%
      Pantothenic Acid 15mg  150%
      Calcium 210mg  21%
      Iron 8 mg  44%
      Phosphorus 20 mg  2%
      Iodine 150mcg  100%
      Magnesium 100 mg  25%
      Zinc 11mg  73%
      Selenium 100mcg  143%
      Copper 0.9mg  45%
      Manganese 2.3mg 115%
      Chromium 35mcg  29%
      Molybdenum 50mcg  67%
      Chloride 72 mg  2% Potassium 80 mg  2%   I really can't believe after being diagnoses that my doctor didn't get me a list of recommend supplements to include the vitamin deficiencies by not having gluten in my diet.   Everyone has to do it on their own. I don't really want to avoid taking a bunch of pills in the morning if I can.   But I'm concerned I'm not getting enough Magnesium and Iron.   Other too? Any recommendations of supplements to increase what I'm currently taking.   Or just on supplement that includes everything I need? Thx.            
    • As far as the grey hair goes, I understand how you feel as I started going seriously grey in my mid 20's also.  As cyclinglady stated, there is nothing you can do about that except color you hair or live with the grey hair.  I chose to color it. Grey hair is generally either a genetic thing or it can be the result of vitamin deficiencies or illness.  It also can't be reversed, which would be heavenly, I agree! You definitely need a full  thyroid panel done because you cannot diagnose Hashi's on antibodies alone.  I have Hashi's so know the drill.  No doctor should tell people to just go gluten free without some level of testing for Celiac.  Those with Hashi's can benefit greatly from going gluten free but that is because those that it helps noticeably also probably do have full blown Celiac.....without Celiac or non-Celiac gluten sensitivity, the gluten-free diet won't help. The supplement you mentioned is just that....a supplement.  If you do have true Hashi's, you'll need more than that to help keep thyroid function normal for you.  I think you need to see another doctor because your doc is missing the boat here.  You really should have a full thyroid panel done and a full Celiac panel.  It is important to diagnosis (or not) these 2 conditions early so you won't have more problems down the road.  Can you request more blood work?
    • Lotions used topically are not a concern at all unless they contain gluten and you ingest them into your mouth.  Gluten has to get into your GI tract, (which begins in your mouth) for damage to occur.  Ditto for hair care products.  As most salons have you bend your head back into a sink to wash, the odds of any shampoo or conditioner getting into your mouth are slim to none. If you shower and let the soap and water run down your face, then make your home shampoo/products gluten free.  
    • YES get the blood test and the endoscope done if you can, if your doctor will put the dia. formally on your records without these then your blessed in a way. I had a similar issues getting mine done. You have to be eating gluten for 12 weeks at least a half slice of bread a day for the antibodies to build up for the blood testing, 2 weeks for the damage etc to show up in a endoscope.
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