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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 Celiac.com's FREE weekly eNewsletter   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

What Were Your Symptoms?
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My symptoms were

bloating

diarrhea

constipation

extreme fatigue

infertility (many years and 100s of thousands of dollars worth !)

depression

irritability

liver damage (my GI dr who didn't even mention celiac though I should have a liver transplant)

jaundice

severe reflux

weight GAIN

lots of dental problems (because of enamel problems)

feeling like I was 'in a fog' a lot

I forgot to add fibromyalgia (very achy-flu like/joint pain/feel like you are 100yrs old) symptoms

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Wildones, did all those symptoms go away once you were gluten-free? How long ago? How long did it take? Sorry... I'm new too, and just trying to get a handle on all of this. :blink:

Many blessings,

Trish

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I saw a huge improvement in my symptoms after a few weeks, even more improvement, once I eliminated ALL of the gluten in my diet (wasn't aware of some hidden sources for a few months). So it took @ 3 months to start feeling much better, and @ 6 months to feel dramatically better for me.

Of my 'measurable' symptoms, my liver function tests are normal, but my teeth have some damage still that hasn't been repaired yet. After spending @ $8,000 so far just for dental co-pays for my sons and I,- and $300,00 for medical expenses- I am not anxious to spend a lot more right now.

BTW the symptoms my 2 sons had were very different from eachother.

If anyone is interested in thier symptoms- long list of MAJOR consequences, because of their own child's history, let me know.

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In my 20s

-Fatigue

-Constant Clods

-Racing Heart (after eating/beer)

-Lactose intolerant-along with a long list of suspect foods

-Depression

-Anxiety

-Just never felt "right"-

Late 20s

-Same as above but a little worse

-Started getting GI symptom

-Urgent need to have BM

-Followed by Constipation

30s

-Take all of the above and add these

-GI symptoms(stomach pain, cramping, gas, diarrhea, urgency to have BM) started getting really bad

-Vertigo

-Shaking upon awakening-told this was all in my head

-Fibromyalgia

-Weigh Loss(35lbs)

-Brain Fog

Believe it or not, through all of these symptoms, I was always going to the gym lifting weights. I did ok except for the last 4 years. I had one injury after the other-elbow joint, back/neck, hernia, and every time I had a hard workout I would get violently ill. Flu like symptoms. My strength dive bombed. I kept telling friends and family that I felt like I was falling apart ,little did I know I was.

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Thank you wildones. :) Wow... "dramatically better"! If you don't mind me asking, what were the hidden sources you found? And yes, I'd be very interested in hearing of your kids' symptoms.

SteveW...

Shaking upon awakening and vertigo? Did those go away as well when you went gluten-free? My mom and I, both diagnosed with fibromyalgia, have the shaking upon awakening and hadn't heard of anyone else with this. I just started eating gluten-free to see how it goes...

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The Vertigo and shaking are pretty much gone since going gluten-free.

Prior to celiac disease diagnosis and going gluten-free the Vertigo would come and go. Sometimes would have it come and go for a week then not happen again for 3 months.

The Shaking was a very strange feeling like every cell in my body was dancing around inside of me. It usually only lasted when I was just waking up and in that kind of fog between sleep and awake. I went to my former Doc for this and he told me to relax and take a day off from work :(

I still have the other symptoms to some lesser degree but I've only been gluten-free for around 4 months(with a few mistakes). From what my GI told me I had major damage to my insides along with suspect areas in my lower bowel that could be the start of Crohns. So it may take more time for me to completely heal + I may have other issues I'm dealing with.

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Just about the only symptoms I did not have are the diarrhea, wasted buttocks, and bloated stomach. I will add to the above lists: constant headaches, migraines, swollen sinuses, and severe heartburn and indigestion. The last time I ate gluten, my eyelids swelled almost shut, and I did get diarrhea, so I think the symptoms are not predictable. Hidden sources I have found include soy sauce, sallad dressings, and candy. Remember to ALWAYS READ THE LABEL!!

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SteveW -- A comment. I would add "hernia" to the list of celiac disease symptoms for this reason. My husband has probably had his celiac disease since he was 27, he's now 53. Diagnosed and gluten-free since 10/03, so he's still 53 yrs old. In the past 10 years he has had 3 hernia repair surgeries: 2 on one side and one on the other and he is working on his fourth hernia. My theory: years of undiagnosed celiac disease manifesting itself in malabsorption, weight loss, muscle wasting (as you know for instance, when someone diets they lose fat & muscle. In celiac disease it probably happens the same way: once your body fat is gone, the body lives off the muscles). My husband lost about 45 lbs total. He went from Hercules type of body (lifted weights too) to Barney Fife. I believe he lost muscle tissue in abdomen area which in turn thinnned it down and resulted in multiple hernias. He gave him a higher chance of hernia and I see this as an indirect result of celiac disease.

Just one woman's theory......

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Wow, thanks everyone! I'm highly suspecting that me and several family members have it. We have ALOT of the symptoms! SteveW, did your anxiety go away once you started a gluten-free diet?

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I didn't have anxiety, but I had depression, which I know is a condition often related to anxiety. It never occurred to me it was related to anything physical, until after I'd been gluten-free for 3 months suddenly I was happy all the time.

I had weight gain, gas, constant colds, sinus infections, and when I got food poisoning or a stomach flu, I got it -- two hours after symptoms would start I'd be so dehydrated I couldn't stand up.

Not that I realized it at the time, but my skin tone was also pretty bad. Dull and greyish.

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HappyCat22

My anxiety/depression has gotten better overall but I still have days when I am really down. Looking back 6 months, I was a lot worse off than I am now. It sometimes seem like thing are not improving fast enough.

Constantly being on "high alert" looking for bathrooms and just feeling sick and run down all the time did have a major role in shaping my mental state over the past few years. So any improvement in my physical wellbeing should help my mental state.

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I am so glad I found this forum. I just read about this disease and I think I may have found what my problem has been for 7 years! I started having symptoms when I was diagnosed with cervical cancer and was under a great deal of stress. The doctore said I had IBS, but after reading what the symptoms are, I'm going to be tested for celiac disease.

I have problems with diarrhea, constipation, sudden and unexplained foot cramps, abdominal cramps, gasiness, weight loss, headaches, occasional shakiness, fatique, and the scariest thing is a racing heart or palpitations. I do believe these things are caused by more than IBS. I work for an alternative health care facility and the doctor and I are going to read up on the disease next week.

How hard is the diet to follow? Is it costly to buy products without the dreaded symptom causing ingrediants? I think my daughter may also be afflicted. She has sudden mood swings, shakiness, cramping. The doctor told her she has an anxiety disorder and put her on paxil, but I'm beginning to wonder if she may have celiac as well.

Thank you for this forum!

Cheryl

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How hard is the diet to follow? Is it costly to buy products without the dreaded symptom causing ingrediants?

Cheryl, it doesn't have to be costly, but in a lot of cases it is. If you just go with the basic foods, like meat, fish, poultry, rice, potatoes, fruits and veggies, then the costs don't get too bad. But if you want to make gluten-free treats or buy them pre-made it can get costly. I do buy things like pretzels, cake mix, gluten-free protein bars, etc. because I have three kids on the diet with me, and it makes it easier on them to have some of their favorite treats. I buy rice flour, potato starch, corn flour, corn starch and tapioca starch for making gluten-free treats and they are a bit more expensive than wheat flour. Xanthan gum is one of the most expensive, but it lasts a long time since you only use a little bit when baking. I splurge on Kinnikinnick gluten-free breads from Canada, since they are the only bread we have tried and really liked. I've not had good success with baking my own bread yet.

So, is it costly? That is up to you and your eating habits.

Is it hard to follow? Not really hard to follow once you learn where gluten can be hiding in your foods, but hard to stay uncontaminated when eating out or sharing a kitchen with others who are not gluten free.

God bless,

Mariann

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Oh My Gosh! The lightbulb just went on!

I had a sinus infection every month for the past 2 years and had surgery 2x to "fix it". I had no idea that could be a symptom of celiac disease. I also wonder if the numerous yeast infections on my skin are also a symptom of celiac disease? I also was diagnosed with social anxiety and was told to avoid crowds. I am on Zoloft now and feel better but still I don't feel completely right...

My children have symptoms...my oldest (11)(she also besides this list has asthma and allergies to everything except the sun).But in celiac disease category she has large stools, painful constipation, skin problems (eczema, dermatitis), fatigue, heavy clotting periods, bruising with no explaination, muscle cramps, weight gain, thyroid fluctuation, depression, irritability.

My youngest (7) has mood swings, rages (was actually diagnosed with Bipolar Disorder-there is a family history, but how much is BP and how much is celiac disease?), hyperactivity, bruising with no explaination, nose bleeds that don't stop, anemia, difficulty putting on weight (50lbs at 7yrs), trouble with reading, reflux since birth, diarrhea, sleep problems (night terrors, sleep walking).

I need to go but I am so glad I have found this forum...I am so glad my light bulb was turned on...

Kelly :D

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Kelly

Your lightbulb sounds like mine! I'm going to see about having my daughter tested as well. I have heard from the doc at work, though, that even though in most cases it's genetic, it can be brought on by extreme situations of stress.

I did an experiment tonight that I'm wishing I hadn't. Not only did I have Orzo (a wheat pasta), but I also had a large slice of rye bread with butter with my dinner. Immediately my heart began to race.

Cheryl

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Cheryl,

I can't be gluten-free yet because of the biopsy, and last weekend I drank 1 beer and had pizza....wow immediately the vertigo and migraine commenced. I couldn't do anything on Sunday but lay in bed and then couldn't go to work. I was miserable with constipation until Tuesday and then diarrhea until Friday. I actually hate it when I put the food in my mouth and then think to myself I am putting poison in my system. Sounds weird I know, but I wish the testing was overwith so I can go on the gluten-free diet. I see my mom and sister who both were just diagnosed and are gluten-free now...they look great and feel great too. My mother is actually willing to take my 2 girls for the summer to put them in a gluten-free bootcamp, because her house is gluten-free already...and she feels much better than I do (more energy). It's good to have 2 people in my family to help me make my home gluten-free..We swap receipes and lists of foods, but I think I will tell them to sign up here too...I have only been signed up for a few days, but already I have learned more than I ever thought I would just from other people in the forum...it's great to know my family isn't the only ones going thru this....My reaction to my AB IGA (200) was first, anger; then denial; to "No wonder I have felt bad all this time". I am glad I found this site too....it's very helpful!!!! :D

Kelly

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Hi Cheryl,

I was just diagnosed with a wheat allergy and have been on

a gluten-free diet for about 5 mos.

my symptoms were:

Insomnia

Burning, itchy eyes

environmental allergies

Diarrhea

Nausea

acid reflux

thyroid nodule (surgically removed)

"spells" of vertigo felt like I was going to faint

Anxiety, less socializing, didn't want to leave the house

Migraines

splitting skin on all fingers

itchy scalp

edema

pain on right side

bloating

gas

There are probably more but can't think of anymore, except moodiness,

especially after ingesting gluten. All of this and I'm not a Celiac

according to my MD!

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Kelly,

I am SOOOO jealous that your mother is willing to run "gluten-free bootcamp" for your kids! My parents would probably try to keep my kids gluten-free during a visit (although I suspect they would insist that "a little bit won't hurt") but my in-laws are convinced that the only health problem my kids have is MY "hypochondria"! Since my kids are too young to police themselves, the upshot of this is that I will get NO time away from them for the next several years! I love them dearly, but they are such a handful, I really wish I had a reliable backup caretaker--at least for emergencies! You are so lucky!

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Sarah,

I agree I am very lucky that my mom is taking my kids...I will miss them terribly. I can always visit, they will be 4 hours away. I appreciate my mom so much for understanding this mess. Of course she has no choice since she is a Celiac too. My mother in law on the other hand has always given me a hard time because I put my children on medication for asthma and mental problems. She thinks I overreact too and that's too bad. One thing about my mother in law she makes the best Mexican Food around, but we all know how much Gluten is in that. I guess I will have to find alternatives....

My emergency back up is my husband. I really am lucky to have him, he helps out so much. When I come home with the kids after school and am unable to stay awake or just feel miserable he will take over this kids and make sure they are bathed and ready for bed. He is actually very supportive in the gluten-free diet and with the exception of his bread and oreos (both hidden so the girls and I can't find them) he wants to do the gluten-free diet with us.....so wow, yes I am very lucky. I don't know where you live Sarah, but if you were close I would watch your kids in a second as I know how trying they can be especially if they have been eating gluten.

Thanks for your response,

Kelly

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