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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.

Newly Gluten Free
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11 posts in this topic

Hi everyone my name is Brittani I am new to this site. I was diagnosed with Celiac about 5 or 6 years ago I was like 16 at the time. Idecided that I didnt seem to have any symptoms or issues (more like iv had them so long I didnt really realize i had them) so I didnt really need to follow a gluten free diet. Well for the last year I have been having reacurring ear infections so I would go to the walk in clinic and get an antibiotic, finally the Dr. said I needed to go see a specialist so I did. The specialist couldnt find any ear infection or problems with my ears in general. He did however find signs of allergys so we discussed them and I told him I had been diagnosed with Celiac but didnt follow the diet. So he told me I really needed to start following it because its probably the root to all my issues...

 

So I finally gathered togeather all my determination and threw out all foods in my house containing gluten and dairy (my husband is not thrilled but very supportive). I have been gluten and lactose free for a little over 24 hours and to be honest I feel worse! My stomach is gurgeling, I have diarrhea, and a headache. Is this normal for the beginning and how long does it usually take to get felling better?

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Yes, it is normal. Your body is going through a with drawl period from both of those items. It will take a while for it to adjust.

 

Recovery time on the diet varies from person to person. Some feel better within a few weeks, others a few months.

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Hi Brittani,

I hope your ear will stay pain free soon.

Diana

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Avoid processed foods as much as possible, and eat fresh, whole foods cooked from scratch as much as possible.  You also may be intolerant to oats as a small percentage of celiacs are.  Other common cross reactions are dairy (see that you are already avoiding that for now) and soy proteins such as soy flours. 

 

You can't undo years of celiac damage in 24 hours.  It is an auto immune disease and damaged tissues will take time to heal from the assault of the antibodies you've made to your own tissues -  IF you stay really gluten free. 

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Glad that you finally made the decision to take the jump. It's also good that your husband is supportive. It will be hard for both of you but definately worth it. One of the first things that you need to do is get rid of or segregate all of your plastic storage containers. Get yourself glass dishes. Stainless steel cookware is also important. Anything that scratches will become your enemy.

Your husband will make mistakes. Be lenient with him. My first big mistake happened not long after my wife took the plunge (she has celiac, not me). I had been out hunting all day. The day turned out well and I came home excited. She had spent the entire day making a big pot of spaghetti sauce and when I got home it was simmering on the stove. Without thinking, I grabbed a piece of "poison bread" and dipped it in the sauce. I had just ruined that entire pot. Mistakes will happen. Good luck.

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Glad that you finally made the decision to take the jump. It's also good that your husband is supportive. It will be hard for both of you but definately worth it. One of the first things that you need to do is get rid of or segregate all of your plastic storage containers. Get yourself glass dishes. Stainless steel cookware is also important. Anything that scratches will become your enemy.

Your husband will make mistakes. Be lenient with him. My first big mistake happened not long after my wife took the plunge (she has celiac, not me). I had been out hunting all day. The day turned out well and I came home excited. She had spent

Hi everyone my name is Brittani I am new to this site. I was diagnosed with Celiac about 5 or 6 years ago I was like 16 at the time. Idecided that I didnt seem to have any symptoms or issues (more like iv had them so long I didnt really realize i had them) so I didnt really need to follow a gluten free diet. Well for the last year I have been having reacurring ear infections so I would go to the walk in clinic and get an antibiotic, finally the Dr. said I needed to go see a specialist so I did. The specialist couldnt find any ear infection or problems with my ears in general. He did however find signs of allergys so we discussed them and I told him I had been diagnosed with Celiac but didnt follow the diet. So he told me I really needed to start following it because its probably the root to all my issues...

 

So I finally gathered togeather all my determination and threw out all foods in my house containing gluten and dairy (my husband is not thrilled but very supportive). I have been gluten and lactose free for a little over 24 hours and to be honest I feel worse! My stomach is gurgeling, I have diarrhea, and a headache. Is this normal for the beginning and how long does it usually take to get felling better?

I too am new to the gluten free diet and my best suggestion is to research research research! This website has help a lot, hearing others experiences. From what I understand it takes 6-8 weeks to really start seeing results, I felt some better after the first week but this last week (week number 5) has been hard I've been going through what I think is gluten with drawl or maybe detox but I've had headaches been super tired and emotional. Just hang in there and know it will get better, it gets darkest before dawn!

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Welcome!

Not only do I no longer get recurring ear infections - my hearing in my once nearly deaf problematic ear has improved since about a year or so gluten-free. It tested recently at only 20% loss - at celiac dx it was 75-80% loss of hearing.

I did have one nasty ear infection a few months ago but it resolved without antibiotic - in my 30s I found that my ear infections reaolved in about the same time frame with or without antibiotic. However, I did go to the doctor and got a Rx just in case the ear became worse....thankfully I didn't have to use them.

Make sure you read the "newbie 101" thread and let us know if you have any more ?s :)

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My name is Lisa and I'm new to this site.  I was diagnosed with Celiac 1 week ago.  Needless to say, this has been a living hell!  I have been have digestive issues for 20 plus years and now finally have an answer.  We are weeding out all wheat in the house with my 10 years old being the "Drill Sargent"!  I feel like crap, have no energy, can't think straight, running to the bathroom 24 hours a day, and no sleep.  PLEASE tell me this will get better!!!

 

I feel fine when I eat, but when the food moves through my small bowl, the pain is a 8 or 9!!  It is just unreal.  I get the pain under control and then it's off to bed where I get up 10 times an hour to go to the bathroom.  Is it just me?

 

Any help or understanding would be greatly appreciated!!

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I know exactly where your coming from. The pain is probably from damage, still to simple food for a little bit, fruit, veggies, baked potato.... Stay hydrated drink even if your not thirsty. Drink ginger tea with fresh ginger root, lemon and honey, the ginger helps to heal, and helps with upset tummy issues. Rest as much as possible, be super careful not to get any gluten the longer you go without it the faster you'll get better and it will! Every one is very supportive on here so keep coming back! Hope it passes quickly for you!!

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I'm new here too and still figuring this all out, too...so I just wanted to offer up a supportive ((HUG)).  I hope you feel better soon!! And like Brandiwine said, read read read.  This website is so helpful, and the people in the forum are amazing.  Hang in there, it WILL get better!!

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My name is Lisa and I'm new to this site.  I was diagnosed with Celiac 1 week ago.  Needless to say, this has been a living hell!  I have been have digestive issues for 20 plus years and now finally have an answer.  We are weeding out all wheat in the house with my 10 years old being the "Drill Sargent"!  I feel like crap, have no energy, can't think straight, running to the bathroom 24 hours a day, and no sleep.  PLEASE tell me this will get better!!!

 

I feel fine when I eat, but when the food moves through my small bowl, the pain is a 8 or 9!!  It is just unreal.  I get the pain under control and then it's off to bed where I get up 10 times an hour to go to the bathroom.  Is it just me?

 

Any help or understanding would be greatly appreciated!!

 

Hi SunnyFL (Lisa),

 

Do you have a lot of bloating / gas in your gut after eating?  If your gut is inflamed and irritated, blowing it up like a balloon can make it painful.  Bacteria in our guts makes gas and that causes bloating.  If you can reduce that it may help.  Bacteria in our gut feed on the foods we eat.  If we eat a lot of carbs and sugars they have a great old time and make lots of gas.  This is a bigger problem when starting out on the gluten-free diet.  Cutting out sugar and carbs can help.  Also taking probiotics and digestive enzymes can help.  After a while your gut heals and the bacteria tend to stabilize.  But during the healing process it can be tricky.

 

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

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

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.

Helpful threads:

FAQ Celiac com

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

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • 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
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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