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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.

Really Confusing Symptoms
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4 posts in this topic

I'm a 17 year old girl. 

My entire life I've had strange and random stomach problems- from frequent gas and digestion problems to occasional crippling stomach cramps so bad that I've been taken to the hospital.

Earlier this year, I started waking up every day with painful, swollen, and itchy hands, feet, and face, especially my lips and eyes. 

Around bedtime I'd get major hives all over my body, and they'd last all night until the next day, until they eventually faded after a few hours. 

I started to have really, really bad itching on my legs that eventually developed into chronic eczema.

My older sister has a gluten intolerance, so I decided that I should try the gluten free diet to see if it would help me. Alot of my symptoms sound like an allergic reaction, but I started reading about Celiac's disease, and realized that I had a lot more symptoms than I originally thought:

 

-skipping menstrual periods

-fatigue and constant mind fog

-trouble concentrating

-anxiety and depression

-frequent mouth sores

-heartburn 

along with the ones already mentioned:

-eczema

-digestion problems (including awful heartburn)

 

 

I've been on a gluten free diet for about 6 months. I noticed immediate relief from a lot of things- especially the stomach problems. I haven't had a cramps episode since. But my eczema continued to get worse, and I've had to seek treatment for that. 

 

I've noticed several things- I'll get hives and swelling every once in awhile right before bed. If I don't take Zyrtec they will last until the next day and can be very painful.

I can usually link the hives to something I ate that day that was contaminated by gluten. It's difficult to figure out sometimes. 

 

Also, my symptoms take awhile to take effect. If I know I've eaten something contaminated, the hives will come that night, and about a week later I will have SEVERE mood swings/anxiety/depression. Occasionally I will get crippling heartburn. 

 

It may seem like I have it all figured out- I obviously have some sort of allergic reaction to gluten. But I've had an allergy test, and it came out negative to everything! And the symptoms aren't always consistent. 

Celiac's disease makes sense in some aspects, but I haven't been tested so I can't be sure. 

I'm really confused, and it can be overwhelming sometimes.

 

Has anyone else had allergy symptoms in conjunction with Celiac's symptoms? 

Does this sound like Celiac's at all? 

I know it's alot of information but can someone help?

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Your symptoms really do sound like celiac disease or non-celiac gluten intolerance (NCGI). I'm sorry you've been feeling so poorly, but I must say that I'm impressed that you figured out the gluten connection for yourself!  Nice job.  :)

 

There are celiacs who also have an allergy to wheat (there is no known allergy to gluten, just celiac disease which is an autoimmune response to gluten) but it's not that common. To me it sounds like celiac disease with symptoms of dermatitis herpetiformis (a super itchy rash from celiac disease) You can have your rash checked for celiac disease since that seems to be your last lingering symptom. To have the rash checked for dh, a dermatologist would do a biopsy on the skin BESIDE the rash, and not actually take samples of the rash... hopefully someone around here who knows more than me in that area can help you.

 

As for celiac testing, blood tests will require you to consume gluten for 8-12 weeks  (about 2 slices of bread per day) to get an accurate result. An endoscopic biopsy requires a shorter gluten challenge of 2-4 weeks.  If that would be too difficult for you, you might need to skip testing.

 

Do you keep a food and symptom journal? Sometimes that can help to figure out what foods are bothering us. Many celiacs are bothered by other foods, and you might also have more intolerances.

 

I hope others can help you more. Best wishes and welcome to the board.  :)

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Hi Alexis Rose and Welcome to the Forum.

 

You mention both eczema and hives.  Do you have both or are you using the term interchangeably?  For the eczema, has there been improvement since going gluten free and have you looked at the DH photo bank to compare?  For the hives, its odd it happens when you go to bed and is gone the next day.  It almost sounds like a contact allergy.  Can you trace it to something in your bedtime ritual?  Lotions, cat sleeping on your bed, anything like that?  It may be two completely separate things going on. 

 

Nicole has already given you great information on testing.

 

Colleen

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Hi Alexis,

 

I did have allergies when I was eating gluten.  I had hayfever that was pretty severe.  Most of my allergic reactions subsided after going gluten-free though.

 

Allergies are an IgE immune reaction, while celiac is an IgG or IgA reaction.  Allergy testing won't show IgG or IgA reactions, so it is no use for celiac testing.  Instead they test for IgA or IgG antibodies in the bloodstream.  The problem is, those antibodies in the bloodstream start tapering off when a person goes gluten-free.  So the tests for them are useless at that point.  A negative celiac test now would simply mean you weren't eating gluten, not that you don't have celiac disease.

 

Eating gluten before testing for celiac is required to get a valid antibody test.  The usual advice is to eat gluten for 3 months prior to testing.  However, if you do have DH (dermatitis herpetiformis), that may be a bad idea.  It is faster and simpler to get a DH biopsy of the skin next to a lesion than to do a gluten challenge.  They test the skin sample for IgA antibodies, which would be present in DH.  There is a section of the forum for DH, and it would be good for you to spend some time reading there.  A gluten challenge at the beginning stages of DH might send it into a flare which could take months to get rid of.  So it's not something to do without some serious research and thinking.

 

Since you've had allergy testing already and it was negative, it is more likely that your reaction is a celiac type reaction, IMNO.

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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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    • Confused
      I have not. I'll talk to my doctor about it
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