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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.

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Hello everyone!

I am 32 years old, and just recently discovered I likely am gluten sensitive. Luckily, my doctor suggested that I might be and to try a gluten free diet. So, at least she should be on board when I tell her what I found out about my reaction.

Some background on myself: I've had migraines for years. I am very easily startled. When I was a child I was in the hospital for respiratory infections. I have anxiety and am easily depressed. My Father has had polyps and his mother died of colon cancer. I swear my Mom has some sort of mental issue, she can get *very* angry in a second. She also has the early signs of arthritis.

A recent stressful situation at my job triggered "the big D". I had it nearly every day. Even after the stress was gone I was having cramps and D and gas after eating. I go scared since it wouldn't go away, so I went to the doctor, thinking I might have IBS. > She told me to try going gluten free. She didn't think I had Celiac (and I don't either) but did recommend me to try gluten free. She also gave me some anti-diarrhea medication.

Well, I was reluctant to try this out to be honest. And at first I didn't think I needed to, as I was OK after just one dose of the medication she gave me. I was OK for maybe 2 weeks, but then got sick again... Then my boyfriend mentioned low carb lifestyle, and I just decided to go ahead and do them both. Lower carbs and no gluten.

It is amazing how fast the "big D" went away! I also was no longer waking up anxious. About 2 weeks in, my Mom made some spaghetti, my favorite! I thought, well I can eat a little and be fine!... Yeah right! I was ill again the next morning, and the morning after woke up anxious again. >> This was my wake-up point. I am 99% sure this is what is wrong with me! I actually was happy to know it. Happy to find all the information and know that maybe this will help me more than with just digestion. It would be wonderful to be rid of at least some of my anxieties!

So, I have a follow-up appointment with my doctor on the 24th. I'm hoping I can talk her into getting me the genetic test. I also want my parents to get tested. I really think they could have it to.

I hope I didn't write too much. I just wanted to share what I have discovered so far!

I'll be here a lot I am sure!

~Christina

PS - I told my Mom I can't have regular pasta anymore, but she is willing to try the rice pasta and keep it just for me. <3

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Without testing, there is no way your doctor could determine whether you are celiac or gluten intolerant. It is a pity she didn't test you for celiac before suggesting you try the gluten free diet. Depending on how long you have not been eating gluten, it is probably too late to get a definitive answer.

I am certainly glad that eating gluten free has had such a dramatic effect on your symptoms. Yes, anxiety is a symptom that many celiacs suffer from and it does generally resolve when they go gluten free, although not necessarily immediately. One of the interesting aspects of eating gluten free for those who are gluten sensitive is that many symptoms that have been accepted as "normal" suddenly resolve, as if by magic. So that those who didn't think they had symptoms find out that, in fact, that did - they just did not recognize them :rolleyes:

The genetic test, as you may know, does not tell you if you have celiac; it can only tell you whether or not you are predisposed to develop it. If your parents have the same predisposing genes as you, it could point to celiac. The better test for your parents would be to have the celiac testing done since you inherited the gene(s) from one or the other (or both).

Stay gluten free and stay well, and post as long and often as you like - there is always someone here who will read and try to help with any questions. Also, read as much as you can about how to keep gluten out of your life. :)

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Without testing, there is no way your doctor could determine whether you are celiac or gluten intolerant. It is a pity she didn't test you for celiac before suggesting you try the gluten free diet. Depending on how long you have not been eating gluten, it is probably too late to get a definitive answer.

...

The genetic test, as you may know, does not tell you if you have celiac; it can only tell you whether or not you are predisposed to develop it. If your parents have the same predisposing genes as you, it could point to celiac. The better test for your parents would be to have the celiac testing done since you inherited the gene(s) from one or the other (or both).

Stay gluten free and stay well, and post as long and often as you like - there is always someone here who will read and try to help with any questions. Also, read as much as you can about how to keep gluten out of your life. :)

Oh, it is a shame about the testing. As I will not be willing to eat gluten again willingly and make myself sick just for a test.

But maybe I can suggest my parents get tested since they are still eating 'normally'.

Thank you so much for the kind reply! I know that this isn't going to be easy and I know it will take time for my body to heal. I just have high hopes, since so much of what I read relates to me perfectly!

Today I am lethargic, but still feeling better on the inside. I'm trying to stay positive. ;)

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Hello.

I am new here as well.

I have had GI symptoms that come and go, and various doctors through the years have suggested food preservative allergies, lactose intolerance, and stress reaction. When I am fine...I am fine. But when my GI symptoms (diarrhea, gas, bloating, cramping, pain under the ribs, nausea) my life is a living hell.

However, as many of you may well know, there is an attitude with doctors that unless they can diagnosis "it", "it" does not exist.

Since doctors have not been able to help me, I have done my own research and I suspect a malabsorption problem, and I wonder if Celiac Disease is the ultimate cause.

I am going to a naturopathic doctor in a couple of weeks (at this point I have nothing left to loose going to alternative medicine). My question is this: have any of you had moments of a few months of feeling well, then, BOOM, 2 -4 weeks of GI distress that makes you just want to stay home near your bathroom?

Thank you.

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Welcome to the site Wysterya and LMB,

@LMB, yes that is something happened to me at time, being better and then worse.

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 gluten-free vitamins.

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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Thank you for the tips and all the links!

Unfortunately it is too late for me to get the test. I am going gluten-free already. The Doctor just suggested it and didn't mention a test. :/ But, I will be seeing her again on the 24th and I will see what she says. Though, I am not willing to become ill again just for a test. :P

I'm definitely cooking more! Plan to dig out the old crock pot and use it! If I can make enough for leftovers it will help. I got used to just cooking for myself, so leftovers were not common here. I'll get there though. I am just thankful it doesn't seem to be anything I can't handle. Not easy, no. But I am trying to not allow it to get me down and just focus on healing and feeling better!

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That's fine to not get tested. If you can stick to the diet without a formal diagnosis there is no need for the test. It's not like the tests get us any better treatment. I hope you feel better soon. :)

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
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