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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.

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Bonnie    0

There is something wrong with me. Apart from Gluten that is! :rolleyes:

I took my son out for dinner on Friday night to celebrate him doing so well at school. I couldn't find anything on the menu that was 'safe'. I asked for plain meat and french fries. I didn't enjoy it - too worried I was going to get sick.

So for some stupid reason I decided to test myself. On Saturday I had 2 slices of toast - from ordinary white bread.

I am so sick I just want to curl up and cry my eyes out but I'm at work. I got Diarrhea all weekend, hugely bloated etc. etc. Today my head aches, nausea and the brain fog is unreal. I don't know if I can control my emotions - I am ready to burst into tears. How embarrassing. My arms are so sore I can hardly lift them to type this. People are going to have to wear gas masks to go near the loo today.

Especially since its self-inflicted. Why do I do it? I don't have an official diagnosis from a proper Medical Doctor is why. I have it from the BEST System but I can't get it through my thick head that this is real. This is the third 'test' I've done in the last 6 months - with terrible repercussions each time.

Does this prove I have gluten intolerance?

Sorry guys, just feel so sorry for myself. Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope. How will I get my official diagnosis I so badly need?

Yvonne

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Guest nini   
Guest nini

Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this. Listen to your body, you know more about your own body than any medical dr. is going to know.

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VydorScope    31
Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are  gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this.  Listen to your body, you know more about your own body than any medical dr. is going to know.

<{POST_SNAPBACK}>

I agree.

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nettiebeads    1
Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are  gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this.  Listen to your body, you know more about your own body than any medical dr. is going to know.

<{POST_SNAPBACK}>

I agree also. By the way, why is everyone so hung up with a test for dx? Remember, these tests are relatively new to medicine, Celiac has been around for much much longer than the medical tests. The diet challenge is a proven diagnostic tool and you have what is termed a positive diet challenge. That was how I was diagnosed 9 years ago. I know I could do the bloodwork and DNA and all that happy stuff still, but so long as I'm gluten-free, I'm healthy and that's all that matters. And as far "testing" yourself, don't sweat it. It's part of being a newbie to celiac disease and denial. After awhile, you will come to associate ALL of the negative side effects whenever you see some food from your former life that you will gladly forego it. Trust me, I've (we've) been there. Don't beat yourself up about it; you are human.

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jenvan    7

I would say you have your answer too. If you are going to be miserable and suffer great damage, the test may not be worth it! There are quite a few individuals on this site who diagnosed with only a diet challenge and not a biopsy. You would have to eat gluten for a matter of weeks--that could be serious!

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ravenwoodglass    1,221
.

Especially since its self-inflicted.  Why do I do it?  I don't have an official diagnosis from a proper Medical Doctor is why.  I have it from the BEST System but I can't get it through my thick head that this is real.  This is the third 'test' I've done in the last 6 months - with terrible repercussions each time.

Does this prove I have gluten intolerance?

Sorry guys, just feel so sorry for myself.  Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope.  How will I get my official diagnosis I so badly need?

Yvonne

<{POST_SNAPBACK}>

You have done a gluten challenge 3 times and had the same result each time. Your reaction was a celiac reaction, there is no doubt. Why do you need a doctor to confirm what your body is telling you. If I listened to my doctors I would still be on at least 5 scripts a day and would have had intestinal surgery or committed suidide by now, if I could have found the energy. Stay away from gluten, accept that you have the celiac DIFFERENCE, now that you know what is the problem you won't be diseased anymore.

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tarnalberry    314

If it helps, many doctors find that repeat empiric testing, like you have done, IS diagnostic for celiac disease. So many would DX you based on the tests you've run on yourself.

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Guest BERNESES   
Guest BERNESES

Oh Bonnie- like you, I don't have an "official diagnosis" but about three weeks ago, I saw my doctor after getting sick and I told her that that was what was driving me crazy. She told me that she could care less what the tests say. If I react to gluten, there is my answer. Hearing iot from a doctor made a difference, but hearing it from your own body is the biggest answer of all.

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happygirl    6

I hope you feel better soon....I think we have all "tested" or at least thought about testing, so its not just you. Takes everyone different amounts of time to find what works for them. I never thought I could live with this diet, but when I went gluten free, I felt like I was handed my life back, literally. Now its my goal to stay as gluten free as possible for as long as possible. Good luck and feel better soon....

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drewsant    0

I had blood tests done that came back negative, but the Dr. said that if the diet worked, then that is all the proof we need for diagnosis since blood tests often come back negative. I was told to go gluten-free for a month and see what happened. I finally was feeling better, so I decided to test myself to just see, ( I was told by my doctor to do this also) and got sick the next day with diarrhea. I don't have the brain fog, pain, etc, just diarrhea. So I thought maybe it was a fluke. Went gluten-free again for about another 6 weeks and was fine, and did it again, got sick again, but now I'm having diarrhea every day with no explanation. No gluten. I'm eating salads and plain chicken breast every day, and dark chocolate for a snack that I know doesnt have gluten. I'm basically eating only once a day because of this. So I'm being tested for allergies in a few days. It is hard because I thought I had my answer, but like someone pointed out to me, what if I got better just because I was cutting out fat? It would be nice to have a definitive answer, but I don't want to go thru the biopsy to find out for sure. I know for me, since I'm still having diarrhea, it is a nagging question in the back of my mind, that maybe it isn't celiac.

I guess that probably doesn't help you, but I know about the nagging feeling that maybe you need an official diagnosis.

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Felidae    0

I don't have a diagnosis either. I've been gluten-free since June 9th and my doctor said to go out and have a glutenous meal after three months of being gluten-free and then I would know for sure. But I have been too chicken to try gluten because I feel so great not having it.

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KaitiUSA    7

The only thing to do is learn from your mistakes and know how bad you feel when this happens. At first I would figure it can't hurt me that much and since I was sick no matter what I ate and didn't react much to gluten like I do now and I would test myself sometimes and I tell you that was the worst thing I could have done for myself. I delayed the healing process.

Whenever you get the urge to test yourself try to think about the risks involved and how bad you feel when you do actually eat some....then treat yourself to a yummy treat that you can have.

Feel better

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Claire    3

Agreed - the body's response is the best test of all.

However the are good reasons to pursue a definitive, in print diagnosis. Celiac is genetic. Family members are usually reticient if not outright antagonistic. They need to be tested as well - whether or not they have symptoms. Your self diagnosis won't convince anyone and family do need to be convinced.

The tests, if positive, will give you specifics - health of the intestinal wall, nutrient absorption, etc. Good luck. Claire

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Bonnie    0

YOU GUYS ARE WONDERFUL! Thank you so much for all your responses.

I honestly don't think I would have got through the last 6 months without the support and info on this site.

I am feeling a bit better today. Last night I had shooting pains very low down in my lower abdomen that were so bad I thought I was going to pass out or end up in hospital. The pains have eased but the sore arms and jaw, tiredness etc. are still there. But its ok because I know it has to run its course and I'll feel better soon.

Does anyone else get that excruciating shooting pain - it started on the left and went into my groin -weird?

You know what my problem is - 6 months ago I had never heard of gluten or Celiac. So to have this type of reaction to wheat seems absolutely bizarre. I can see the people around me think its impossible.

Claire I hear what you are saying. My mother has lupus, diabetes, loss of hearing, chronic D, weights 81 Pounds, organs are failing. She is 55. I told her about the gluten but she refuses to change her diet. However, I want to get my children tested.

Yes I have my proof now - I will NEVER willingly eat gluten again.

Thanks again everyone.

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jenvan    7

Yea Yvonne! You're on your way! No more gluten!

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VydorScope    31

Print this thread and keep it on your fridge as a reminder for the next time you tempted....its easy to say that now... but what about in 6 months? a year? 5 years?

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skbird    0

Good idea, Vydor... When it's been a while since I've had a reaction, I start wondering if I really have a problem. Then I'll get glutened and remember EVERY DETAIL and think WHY would I ever question that??? But I still do...

Good to have it down in writing.

Stephanie

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toxemicfrog    0

hi bonnie

i (as everyone else does) know how you are feeling and i agree with the wise words already imparted...Doctors have medical school experience this is true but only you know your bodt as intimatly as you do...listen to it and you cant go wrong. I have (well thought i was) gluten-free for 5 weeks and could not work out why i was still sick...even went to the dr....turns out that by examining my intake i found the culprit...a simple cup of milo (which i love) everyday has been causing all the pain (yes i get the groin one too especially towards the end of an attack when I feel well enough to eat again-that first meal never sits well and i get the pain you described).

I sometimes (well lets be honest) a lot of the time resent that I cant eat what i want but i spose that will go with time when i find food taht is interesting,tastes great and does not make me sick. All goes with new celiacs i spose...as i said i am just getting aver an accidental glutening so im with ya hon.....chin up though there is light at the end of the tunnel.

Feel well soon, we are all with you!!!!! :P

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paw    0
Does anyone else get that excruciating shooting pain - it started on the left and went into my groin -weird?

<{POST_SNAPBACK}>

Look what I found on my gastroenterologist's website (which linked me with a larger patient information site) http://www.gastro.org/wmspage.cfm?parm1=689

"Gas can collect anywhere in the lower intestine. Often it collects on the left side of the colon, and the pain can be confused with heart disease. When gas collects on the right side of the colon, the pain can be like that caused by gallbladder disease or even appendicitis."

This makes me think your pain may be caused by gas stuck in your colon. At least that is something that can go away after awhile.

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Nevadan    0
Sorry guys, just feel so sorry for myself.  Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope.  How will I get my official diagnosis I so badly need?

Yvonne

<{POST_SNAPBACK}>

I also agree that you already have a good dx just by your body's reactions to gluten. However, should you need more justification for getting other relatives tested you might do just a DNA test - it requires no gluten consumption and clearly documents hereditary tendencies. I had mine tested by Enterolab. The DNA test alone there is about $150.

George

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CeliacMe    0

Bonnie,

I know what you are going through. The french fries might not be okay, if they fry them in the same oil with breaded products and/or the fries are processed with modified food starch. ALEXIS products makes gluten free french fries you might findin the freezer section.

Also, resturants such as OUTBACK STEAKHOUSE, PF Chang's China Bistro and Legal Sea Foods have gluten free menus. Also, go to resturants that specialize in foods that are plain (not marinated), like a steakhouse and you can call ahead to find out if the marinate the meat in a sauce that contains gluten. Most decent places will accomidate you, also you can get a burger with no bun and a baked potatoe. Hopefully you'll have better luck next time.

Regarding the "test" you should see a doctor, there is a simple blood test that your doctor can do, if you are suffering from all the symptoms and the test is positive, than it is save to assume you are celiac.

Pamela

Palm City, FL

There is something wrong with me.  Apart from Gluten that is! :rolleyes:

I took my son out for dinner on Friday night to celebrate him doing so well at school.  I couldn't find anything on the menu that was 'safe'.  I asked for plain meat and french fries.  I didn't enjoy it - too worried I was going to get sick.

So for some stupid reason I decided to test myself.  On Saturday I had 2 slices of toast - from ordinary white bread.

I am so sick I just want to curl up and cry my eyes out but I'm at work.  I got Diarrhea all weekend, hugely bloated etc. etc.  Today my head aches, nausea and the brain fog is unreal.  I don't know if I can control my emotions - I am ready to burst into tears.  How embarrassing.  My arms are so sore I can hardly lift them to type this.  People are going to have to wear gas masks to go near the loo today.

Especially since its self-inflicted.  Why do I do it?  I don't have an official diagnosis from a proper Medical Doctor is why.  I have it from the BEST System but I can't get it through my thick head that this is real.  This is the third 'test' I've done in the last 6 months - with terrible repercussions each time.

Does this prove I have gluten intolerance?

Sorry guys, just feel so sorry for myself.  Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope.  How will I get my official diagnosis I so badly need?

Yvonne

<{POST_SNAPBACK}>

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