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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.

Devastated, Angry, Frustrated...
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Momma Bear    1

Two weeks ago my life was turned upside down with a follow up doctor's appointment. I initially went to my doctor for a long overdue check up (I have Behcets disease and while I normally just deal with the symptoms, I thought I should get evaluated for some shortness of breath). I happened to mention that I eat gluten free (for about the last four months) because it significantly reduced my IBS. He decided to run a celiac panel, though he wasn't so sure it would show anything. Fast foward a few days and I received a call saying I needed to come in to go over my lab results. I was told that my bloodwork said I not only had celiac but I was one of the worst cases he has ever seen and he suspects significant intestinal damage (said my anti gliadin, anti endomysiol levels were really high, though I didn't see the results). I was informed that my vitamin B12 was very low as well as my vitamin D. I am having a biopsy in a few weeks. To compound all this, my doctor also suspects I may have Ankylosing Spondylitis (I have arthritis in my spine that is steadily getting worse as well as testing positive for the HLA-B27 gene). He also threw out the scary lymphoma word...why??

I am struggling with this because in looking back (I am 32), I can see how painfully obvious this diagnosis is and that it is very likely I have had this since I was a young child. Let me just say, my childhood was miserable and I spent a good chunk of it being poked and prodded trying to find out what was wrong with me (they initially thought Crohns or inflammatory bowel - both ruled out). I should also mention that I suspect I have DH as well since I have a scaly nasty rash on my scalp. The itch is so intense and the sores weep so that my hair looks greasy when it's flaring up. It has slowly taken over the entire back of my head. Again, I am angry because it's something I've dealt with since childhood and no doctor has ever given it a second thought. I have also had this dull ache next to my belly button for over a year - assuming it was maybe a hernia...now, who knows! I have never felt good a day in my life and i have gotten so used to being sick that it became my normal.

How do you deal with all of this? I am a mom of young children and I feel like I am falling apart at the seams right now. I have a strong faith in God and I trust that He has a plan for me....it's just not the plan I was hoping for. Do you ever get over the devastation and settle into a new normal? I just don't know what to expect.

If you made it all the way through this rant, thank you.

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Marilyn R    239

From everything I've read (and experienced), the anger is normal. What you've been through isn't fair! You did everything right.

You're also doing the right thing by writing about it and using the forum to learn about proceeding with a gluten-free lifestyle in order to improve your health and wellbeing.

Allow yourself to go through the anger phase. It took me about a year to get over being angry, but I'm older than you and perhaps more set in my ways.

Because you have multiple autoimmune diseases, try to focus on stress reduction. I read that Yoko Ono gave John Lennon a card that simply said "Breathe" when they met. Try to make time for yourself to relax (nothing makes me relax more than a nice hot bath with salts and a nice scent like peppermint oil).

I know someone who had so many tumors in her stomach that her oncologist told her she couldn't treat her anymore. The cancer completely resolved without treatment. Her primary care physician, someone I respect and have known for over 10 years, attributes this woman's recovery 100 percent to stress reduction. The oncologist told this doctor that the cancer was auto-immune based and resolved itself.

You're on the right path. It isn't an easy one, but it will be a better one than you've already been done. Hang in there! You have a lot of people rooting for you...

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ravenwoodglass    1,218

Welcome to the board. It is normal to feel as you do. It will take some time to heal but you will heal. You may find a lot more resolves than you can imagine and in a few months you will likely feel better than you have for a very long time. While the gluten free lifestyle does have a bit of learning and takes some getting used to after you have healed it will be so worth all the trouble.

If your doctor is not giving you B12 shots get some good gluten-free sublingual tablets to bring those levels up. Some of us went a long time suffering before we got diagnosed, it was 45 years for me, and it does make someone angry that the diagnosis was overlooked for so long. Try to concentrate on learning what you need to learn to keep yourself safe, ask any questions you need to and read as much as you can here. Since you have scalp lesions do make sure to check your shampoos and conditioners etc for gluten ingredients. If you have questions about what you can use check out the products section to find safe options or ask if your favorites are safe. Hopefully your doctor told you that all your first degree family members need to be tested now. That includes parents, your children and siblings. I hope you recover quickly but we do often have some ups and downs at first.

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mommyof4    4

I just want to encourage you to "hang in there". Without trying to over simplify, really try to walk through one day at a time...tackle each new problem as it arises. It's only natural to feel frustrated & discouraged. Believe me, I get that!

I was diagnosed last Fall & I also am a mom (of 4). I was in & out of the hospital, lost 22 lbs in a few weeks, & was in pain. I couldn't even grocery shop for a couple months because I was so weak from lack of absorbing nutrients & dehydration. I was frustrated & discouraged...all I wanted to do was keep living! I had to have my mom & mother-in-law help me with the kids for a while. My sister-in-law kept telling me "this is a season you are walking through, NOT staying in!" I still try to remind myself of that when I have a rougher day. I have had other health issues arise because of the damage, BUT the rough days are fewer.

I agree with the previous post about stress reduction activities...that can really help. A massage or relaxing with a cup of tea. You mentioned that you are a religious person...I also am, and I have little notecards all over my house with Bible verses to encourage my mind & heart.

One other little thought, if you can have someone go with you to your dr appointments, that can be helpful. Often so much information is given that it can be difficult to remember everything.

This is a great site to post on...people are supportive, encouraging & experienced. Keep us posted on how you are doing & what you find out!

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This verse has carried my through some of the last few months since I found out I have celiac. I hope that it will help you.

"And even to your old age I am He, and even to gray hairs will I carry you. I have made, and I will bear; even I will carry, and will deliver you." Is. 46:4

You have been sick a couple of years longer than I, however, I was 19 when I fell ill. We are not too heavy for the Lord. Hang in there, or just be carried.

Diana

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GFinDC    609

Welcome to the forum Mommabear,

It sounds like you may have found the answer to your prayers with celiac disease. Celiac is autoimmune also and can affect any part of the body. There are 300 possible symptoms of celiac disease. The good news is that if it is celiac disease (and I don't doubt it at all) that you can improve your health greatly by simply changing your diet. There aren't many diseases where that is true. It's kind of like being given a get out jail free card.

It's possible you have been mis-diagnosed for years, that happens with celiac. All those 300 various symptoms often seem to indicate something else and the celiac test could clear it up but doctors don't run them often enough.

I like this verse, it is about Paul's request for release from the thorn in his side:

2 Corinthians 12:9 (King James Version)

2 Corinthians 12:9

King James Version (KJV)

9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Anyway, It i can be a rough road for the first 3 to 6 months of the gluten-free diet. Sometimes longer. It takes a while to heal our intestine and for the body to absorb enough vitamins etc to heal. Also the gut bacteria balance needs to change to accomodate the new foods being eaten. Instead of spending hours in the grocery store reading food labels on processed foods, it is better to eat whole foods instead. They are better for you too. I feel better now than I did 10 years ago. I had pain in my abdomen also and it went away after5 9 months or so on the gluten-free diet. Being angry or emotional is normal IMHO, it is a big piece of news to hear you have an autoimmune disease that requires a lifetime diet change. But it is something that gets easier after you have done it a while. And it's very worthwhile once you start feeling better.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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nvsmom    332

I too was recently diagnosed with celiac after a lifetime of discomfort, and I felt that bitterness that so much time was wasted. Knowing that I could have been healthier for decades, and that my other autoimmune diseases are linked or caused by this, was a hard pill to swallow. It's unfair, and I feel for you.

I'm not a religous person, but I like to quote my favourite fortune cookie: Acceptance is the key to happiness. ...Eventually acceptance will come and you'll be able to move forward.

I wish you the best and a quick adjustment to this new way of regarding food. (hugs)

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Takala    413

I try to stick to the gluten free diet, that was originally proposed as a "starch free" SCD by the eating pioneers in the field.

Today, maybe 30+ years since I was told I was arthritic, and nine years into this gluten free thing, I'm more flexible and functional as an older adult approaching early retirement age, than I was as a young adult.

I have found conventional rheumatologists to just be rather useless with this concept of certain food causes massive inflammation for some of us. Oh, well. Beware that they do not try to drug you into a permanent state of disability, because that is all they have.

For the scalp problems, you MUST get rid of any shampoos and conditioners that have wheat and oats in them. Clean your hairbrushes and combs.

Suggest you just start rinsing your hair daily with water and maybe a bit of baking soda, then rinsing again, then putting a bit of pure apple cider vinegar in water, 1 part vinegar to eight parts water, and using that as the "conditioner," until you get a shampoo you don't react to. You can also put diluted vinegar and water in a spray bottle for spritzing on your wet or dry hair. If you have fuzzy hair, try a tiny dab of pure coconut oil or shea butter rubbed into it after your rinsings.

I am guessing you do not color your hair, but, in the future, if you do, try to use brands without gluten. Also, check your makeup, if you use any, the big concern is lipstick. I have extremely sensitive skin and use mineral cosmetics. I have also had many complements on how much better my skin looks since going gluten free. My hair also grew back in thicker. You will like this part. :)

Your spouse and children: ditch their personal care products also, if you react to them, and replace them with safe ones.

Get children tested.

You may contemplate taking your house gluten free, so as to simplify cooking meals and reduce chance of cross contamination. My husband volunteered to do this after seeing me get sick one two many times accidentally. He still eats whatever he wants when he goes out for work. Get a crockpot, if you don't have one already.

Testing recipes: you can bake in the microwave in small cups, before blowing a lot of dough on a 2lb loaf of something you end up not liking. ;)

Wash your bedsheets and towels and pillowcases to get rid of any old residues. If you have a cat which sleeps on the bed, change the cat food to gluten free, oat free, barley free. Check and go to unscented cat litter (some litters are made of wheat!) Ditto if you have any other inside pets, get rid of the gluten in their food. Pets lick themselves, and spread that stuff all over the place, especially if they sneak in and jump up on the bed when they think you aren't looking or you aren't home.

Pet treats. Use rice cakes. Pet chews- use plain ones, and not those from China. Last thing I want to find stashed by a retriever, in my laundry or in the bedspread is a half chewed glutenous toy.

Lay off the iodized salt for now, that also aggravates it. WATCH OUT for some salt mixtures which have dextrose, especially unsourced dextrose, which is a grain byproduct.

You will have to work a bit harder to get this under control than some people, but once you do, you may be shocked at how differently you feel, especially if you stop being malnourished. The new normal means that I just read labels when shopping, with attention to detail much more fanatically than the average person, and I eat "healthier," and I try to encourage people who are starting out that the results are worth it. When I'm not getting after manufacturers who are using hidden gluten.... <_< or the media which keeps trying to portray this as "fad" dieting. :ph34r:

This is the one auto immune disease which can be controlled by diet. :)

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Momma Bear    1

Wow! Thank you so much for all of the thoughtful and very helpful replies - I started bawling when I was reading all of the responses. I know I am just starting out on this journey towards better health but I already feel so much better emotionally, just knowing that I'm not alone in this struggle. For my fellow believers in Christ, thank you for the Scriptures and prayers -what a blessing! I have learned so much in this past week and I am hopeful that I will eventually settle into this new way of living. There are times where I am just overwhelmed with anger and emotion but I know that this will pass. Again, thank you for each of you that took the time for me to respond to my desperate cry for help. I am just floored, really. I hope that someday I will be able to encourage someone who has to walk this journey the way I've been encouraged here.

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Good luck on your journey I'm so glad you're getting support on the forum

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T.H.    404

*hugs*

I'd second Takala in getting the children tested. If they are negative, some experts recommend testing them every 2-5 years, for the rest of their lives, or if they start developing symptoms. This disease can trigger at any time, and symptoms may show up only after damage it being done.

You also may want to see how many of your family members you can get tested, too. Siblings, parents, and children are now 10 times more likely to have this disease, now that the diagnosis is in the family. Cousins, aunts, and uncles are about 4-5 times more likely to have this disease.

Re: the anger - I personally have been using to try and help other people. I sent letters to all the doctors that missed this. Told them what my symptoms were that they saw me for, and told them what it actually was. It might not make a difference, but just maybe they'll see someone in the future with those same symptoms and they'll remember and test them. And it certainly won't hurt.

I also share this with others if they mention having similar symptoms, sometimes even if they don't, and there have been folks it has definitely helped who now have a chance at getting healthy, just like me. One of these was a mother whose infant was reacting, and gluten turned out to be the reason. Docs totally missed it.

We can't get back those years, but I like to think that our outrage and passion over this issue may be able to get those years for others, and make something good come out of this.

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GFinDC    609

Hey Mommabear,

It may take awhile but your body as it heals will be able to absorb more vitamins and stuff that it needs from your food. Sometimes people take sublingual B-12 to help with absorption. Be sure to look for vitamin pills with no gluten, and hopefully no dairy or soy also. Nature Made and Solgar are pretty good brands. You may find you have more energy after you have been on the gluten-free diet a while. Our bodies spend a lot of energy trying to destroy and then repair the gut and when they don't need to do that it can be used for other things.

Gluten can also affect the brain (gluten ataxia) and can cause depression and anxiety. Some people even have gluten withdrawal effects due to e opiate like molecule structure of gliaden. It really can affect any part of the body. But our bodies are amazing things and can recover also. Simple whole foods are the way to go when healing. Processed foods are risky and time consuming to figure out if they are safe.

Plain meats, nuts, fruits, veggies are good for us. After a while on the gluten-free diet you will know your reactions to CC (cross contamination) better and can try processed foods. Shared toasters and condiments like peanut butter and mayo in jars are bad. You should get your own and mark them with a marker. May6be put all the gluten-free food on one shelf or area and keep it separate from the gluten stuff. It's a learning process but well worth doing. I hope you feel better soon! :)

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Momma Bear    1

Again, thanks for all of the guidance! I already took my children for bloodwork and got a call Friday saying that the results were negative (antibody levels at 2 for one of them). We completely removed all forms of gluten from the house, including all personal hygiene products, laundry soaps, etc. I am also eating a whole foods diet, as my doctor instructed, and I was also told no eating out for now (though the irony is that I never did like eating out because it always made me sick, now I know why!). I was given a vitamin B12 injection at the doctor's, as well as a prescription for a B12 nasal spray. In addition, my doctor has me taking D supplements. I'm going for another blood draw mid October to see where I'm at with my antibody levels (hopefully non-existent!!), and my vitamin levels and then from there he's going to make decisions as to what the next step is if there's not enough improvement in the vitamins. I dont feel any different yet and one thing that is really bugging me is that I am still struggling to breath at times (this was new as of a month and a half ago, prompting my initial visit to this new doctor). I had lung function test as well as an x-ray and everything was okay. He did say he could hear crackling in my lungs, not sure what that's from but I have to assume its the acid reflux. Anyway, I am doing what needs to be done and I hope I am on the right track to getting healthy, finally! Thank you, thank you, thank you again for all of the help!!

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frieze    114

Again, thanks for all of the guidance! I already took my children for bloodwork and got a call Friday saying that the results were negative (antibody levels at 2 for one of them). We completely removed all forms of gluten from the house, including all personal hygiene products, laundry soaps, etc. I am also eating a whole foods diet, as my doctor instructed, and I was also told no eating out for now (though the irony is that I never did like eating out because it always made me sick, now I know why!). I was given a vitamin B12 injection at the doctor's, as well as a prescription for a B12 nasal spray. In addition, my doctor has me taking D supplements. I'm going for another blood draw mid October to see where I'm at with my antibody levels (hopefully non-existent!!), and my vitamin levels and then from there he's going to make decisions as to what the next step is if there's not enough improvement in the vitamins. I dont feel any different yet and one thing that is really bugging me is that I am still struggling to breath at times (this was new as of a month and a half ago, prompting my initial visit to this new doctor). I had lung function test as well as an x-ray and everything was okay. He did say he could hear crackling in my lungs, not sure what that's from but I have to assume its the acid reflux. Anyway, I am doing what needs to be done and I hope I am on the right track to getting healthy, finally! Thank you, thank you, thank you again for all of the help!!

Make sure your D is D3....good luck

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    •   Ironic, We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking. My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat.  We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it .  We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day.  She says I know mom I know. The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well.  Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options.  Thoughts?
    • Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter.  I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again.  My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet.  But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility.  My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.  However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.  
    • It might generate based on traffic searches  or posts etc. My guess. I read them and respond because I wasn't on here as a member in 2012. I only use to visit then. So it's new to me V. happy friday   😋  
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