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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.

Hello, Introducing Myself
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9 posts in this topic

Hi, just thought I would formally introduce myself. I've been posting for a short while.

I've had mysterious illnesses much of my life. I've had lifelong struggles with migranes, stomach problems, insomnia, fatigue, depression, panic attacks and anxiety. I would occasionally pass out. My weight has gone up and down numerous times, and my menstrual cycle was irregular to the point of going years with none. I would sometimes have strange outbreaks, like hives, swollen eyes and lips, terrible mouth sores, or odd skin eruptions all over my hands. Many of these things I just accepted as quirks. I wasn't encouraged to go to the doctor, and I learned to just "be tough".

Soon after I married to my husband of 13 years, we tried to conceive, with no luck. About 2 years in, I was diagnosed with PCOS (Polycystic Ovarian Syndrome). I latched onto that as an answer to many of my issues. With a lot of time (4 years) and effort, diet changes, weight loss and some meds, I was able to conceive twins, and give birth succesfully. I then miscarried twice, and finally had my third child, four years after my twins.

After a few very stressful years, and the birth of my third child, I began to struggle more. I could not lose weight no matter what I did. I would work out for an hour a day with no results. Then, my husband got very, very ill, late last year. He was in the hospital for a week, then out briefly and back in. Not long afterwards, my health started to decline, very rapidly. I believe the stress kicked my celiac into high gear.

I became fatigued to the point of having to drag myself out of bed each morning, and spending much of the day on the couch. My weight ballooned, even though I didn't eat much, and had no appetite. I always looked pale and swollen. I didn't have a regular BM for months on end, they were all loose, and quite often bloody. I had shooting and dull pains in my abdomen. My sciatica occasionally acted up, my joints ached and I had constant pain in the heels of my feet. I could not shake my low grade depression, despite being on meds. Anytime I tried to exercise, my hands and knees would tremble. I woke up one morning shaking all over, unable to get out of bed at first.

I went to my PCP about the pains in my abdomen, and other concerns and he thought it was gallbladder. After several tests with no results, I was sent to a GI, had a endoscopy and colonoscopy, and was finally diagnosed with celiac and gastritis, atthe age of 35.

I've been gluten free since late June, and have seen improvement in some ways, and still struggling with others. Still very fatigued, taking supplements, and getting additional blood tests within the next day or two. I've lost about 16 lbs thus far, which is nice, but I'm most concerned with healing. I'm really grateful to have found this forum, and discover so many other people "like me". Congrats if you made it through my ramble. :)

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One more thing, if anyone has any advice for strengthing hair and teeth, I'd love it. I've been losing hair like crazy and my teeth are weakened. I've heard calcium and iron?

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Welcome to the Board! I'm sure many folks will have helpful advice to share with you. Regarding the teeth and hair, you might try adding magnesium as well as calcium. Brands of magnesium that are easy on digestion are Nature's Way Magnesium Complex and Bluebonnet liquid magnesium. Also, a good collagen product, like one made by NeoCell, will help with your hair, too, as will chelated zinc. Some of us have also had good results from BioSil, which contains silicon. Lastly, a good Vitamin B complex could help with your overall symptoms. I use Country Life Co-Enzyme Vitamin B Complex. It sounds as though your body has a lot of healing to do, and it can take 1-2 years before you'll feel completely well. Be patient--you WILL be well soon!

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My old PA (she moved away) told me Biotin supplement. Of course we never thought to investigate the cause; more concerned with low grade fevers.

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I tried Biotin for a couple of months after several hair dressers recommended it. It actually made the situation worse! I too have PCOS and of course the thinning hair goes right along with that. Since my GYN put me on metformin two months ago, my nails are growing like crazy and are much stronger. I have not seen a difference in my hair.

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Thank you all for the advice and the welcome, I will check out the products! I just had blood tests this morning (10 vials) to check my levels, so I'm hoping I'll get some answers.

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Thank you all for the advice and the welcome, I will check out the products! I just had blood tests this morning (10 vials) to check my levels, so I'm hoping I'll get some answers.

Hi and welcome!

Besides having studied Cosmetology, which led me to participate in hair forums, I also was studying Holistic Nutrition so I know quite a bit about nutrients, and one that I researched and has a lot to do with hair health but is also related to PCOS is iodine, please read go here.

Biotin is part of the B-complex and I learned that it's never a good idea to take a single B vitamin without properly supplying the other known 10 factors. Silica has worked for me, more specifically with MSM, a form of sulfur, another mineral that plays an important role in hair and skin health.

Magnesium "oil" (or liquid mg. chloride), intended for transdermal use, is applied by some people directly on the teeth, with a brush, to help strengthen them, especially when the enamel is worn out and the teeth look translucent. I don't know if these days it can be found at health food stores but I've been ordering mine online from www.health-and-wisdom.com because their prices are very good.

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Hi and welcome!

Besides having studied Cosmetology, which led me to participate in hair forums, I also was studying Holistic Nutrition so I know quite a bit about nutrients, and one that I researched and has a lot to do with hair health but is also related to PCOS is iodine, please read go here.

Biotin is part of the B-complex and I learned that it's never a good idea to take a single B vitamin without properly supplying the other known 10 factors. Silica has worked for me, more specifically with MSM, a form of sulfur, another mineral that plays an important role in hair and skin health.

Magnesium "oil" (or liquid mg. chloride), intended for transdermal use, is applied by some people directly on the teeth, with a brush, to help strengthen them, especially when the enamel is worn out and the teeth look translucent. I don't know if these days it can be found at health food stores but I've been ordering mine online from www.health-and-wisdom.com because their prices are very good.

Thank you for all the advice, I always find something new to research on this forum! :)

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Hello, I am Larry Gessner. I thought I would just say hello and let you know that I feel for all of you that have been diagnosed as celiac, and those of you who have other aliments that fall in line with having to have special diets. Just a little background on me. I live in ND and work for as a Quality Control manager for a flax company. I myself have not been diagnosed with celiac, however I have friends who are. Back in 2006 I woke up one morning and could not figure out why I felt so bad. I mean I felt really bad! It took me 10 or 15 minutes to get out of bed and I knew something was terribly wrong. I managed to get to the kitchen and make coffee but I was so weak and felt like I had contracted some kind of bad flu. Hours later I dragged myself to the local clinic and my bloodwork came back normal, so they had no idea what was going on. The best way that I can describe my condition is that I could not even pick up a broom and sweep the floor if I wanted to. This was devastating for me and because the doctor felt it might be rheumatoid arthritis she set me up an appointment with an arthritis specialist. I had to wait for two months to see this doctor and when I saw her she diagnosed me with muscle crystallization. I had never heard of this before and it scared the heck out of me. She prescribed a medicine and sent me on my way all in about a half hour. At the time I was a Sheriff and I felt it wasn't fair to my deputies that they had to cover for me because I could not work. it appeared that I was not getting any better and so I resigned so that my spot could be filled and they could hire another deputy. After a year of not making any progress I felt I needed a second opinion. I made an appointment with another doctor and He told me that the first doctor did not do a certain test to rule out rheumatoid arthritis. So they took more blood and my ANA was 364 when it should have been 124 so now they knew that my autoimmune system was attacking itself and prescribed medicine to help. I started to make progress but my strength was gone and I knew that any job I would have to have would be a desk job. To this day I have no idea what I ingested to make this happen and at 61 all I can do is ride it out until I can retire at 62.

I stated that I feel for all of you because I cant imagine what it must be like to not be able to go to the store pick out whatever you like and make that meal. I can only imagine what it must be like to not be able to go to restaurants and pick something off the menu. I realize that thing have progressed a lot over the years but since I started doing research on being Celiac, I see that one of the biggest problems you face is thinking you are getting Gluten free food and it turns out to be cross contaminated. Since this is now celiac Awareness Month I am  trying to get involved with any groups in my state to see what I can do to help get the word out. In Bismark ND they just opened a Gluten free bakery and it is its own separate facility. I hope that my state is doing all that it can to provide services for Gluten intolerant people and that someday this affliction is a thing of the past. I wish you all the very best and keep a positive attitude.

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    • Newbie: mother to coeliac kids
      Are there any foods, like broth, that don't make your son feel sick?
    • Newbie Mom - How is my son feeling?
      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
    • Newbie Mom - How is my son feeling?
      Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      No one in my wider family gets it, although my sister is certainly trying to understand. She gets that I will bring all food for my coeliac kids when we come for meals and is okay with that.    For other social events, I will suggest the meal is at my place so I can control the gluten.  But my biggest battle is my children's father (my ex husband) who refuses to get it, and thinks I am being stupid and trying to prevent him seeing V.  I have offered that V can visit but not eat nor stay the night.  Ex does not have the means or the brains to manage gluten free meals.    At this point it looks like I may need to go to court to get an order to prevent V from being forced to go and get glutened. I really really hope to avoid this, but its not looking good. 
    • celiac disease is psychosomatic
      I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products. I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.  
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      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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