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Hello,

I am a 22 year old female - normal weight and height. When I was 20 years old I started waking up with a swollen lip, or swollen face - to the point where I was no longer recognizable. Sometimes both lips swell and I literally look like plastic surgery or injections gone wrong. Doctors couldn't find anything and allergist came up with nothing. I went to the naturopath and they tested my sensitivities and told me to cut out a long list of foods including gluten. I cut out all foods and started bringing them back in except for gluten. I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month). I am a student and when the reactions happened I couldn't leave the house, but I am beginning a job in January and I cannot be taking off work for these random episodes:(

Sometimes I have swelling in the ball of my foot and it gets VERY ITCHY and hot. A few times I had swelling in my wrist and the next day when the swelling went away, my wrist was still very sore. Other nights I wake up and my throat feels like it is swelling and I have a hard time breathing. I started eating gluten again here and there. A beer here and there, a burrito from time to time, and I have had no swelling - but today for the first time I had real pizza and my foot is swelling and I feel my face about to swell. 

NOTHING helps the swelling go down other than just time. No allergy pills help. My doctor told me to take allergy pills every night for the rest of my life basically. 

I don't have any digestion issues or other pain so I am not sure what I have or what is going on. My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive....... 

Has anyone else had these symptoms or heard of them?? Any advice will help!

Thanks!

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1 hour ago, Lizzy18 said:

Hello,

I am a 22 year old female - normal weight and height. When I was 20 years old I started waking up with a swollen lip, or swollen face - to the point where I was no longer recognizable. Sometimes both lips swell and I literally look like plastic surgery or injections gone wrong. Doctors couldn't find anything and allergist came up with nothing. I went to the naturopath and they tested my sensitivities and told me to cut out a long list of foods including gluten. I cut out all foods and started bringing them back in except for gluten. I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month). I am a student and when the reactions happened I couldn't leave the house, but I am beginning a job in January and I cannot be taking off work for these random episodes:(

Sometimes I have swelling in the ball of my foot and it gets VERY ITCHY and hot. A few times I had swelling in my wrist and the next day when the swelling went away, my wrist was still very sore. Other nights I wake up and my throat feels like it is swelling and I have a hard time breathing. I started eating gluten again here and there. A beer here and there, a burrito from time to time, and I have had no swelling - but today for the first time I had real pizza and my foot is swelling and I feel my face about to swell. 

NOTHING helps the swelling go down other than just time. No allergy pills help. My doctor told me to take allergy pills every night for the rest of my life basically. 

I don't have any digestion issues or other pain so I am not sure what I have or what is going on. My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive....... 

Has anyone else had these symptoms or heard of them?? Any advice will help!

Thanks!

Your doctor can not test you for Celiac while you are gluten free.  The test will be negative, even if you have Celiac.  So I guess you could call that a false negative.

There are very rarely false positives on the Celiac blood test. Occasionally, a low positive could mean another problem.

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Did the allergist identify any allergies (IgE)  at all?  If not, consider Mast Cell Activation Disorder.  Talk to your doctor about it.  

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

I have no idea what is causing your swelling, but you should keep advocating for your health!  

Edited by cyclinglady

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7 hours ago, Lizzy18 said:

I went gluten free for about a year and I had only swelled up once while I was gluten-free. (before this diet I was swelling up 2-3 times a month).

This means your issues might be related to gluten sensitivity/celiac. 

7 hours ago, Lizzy18 said:

My doctor also doesn't want to test for celiac, as too many times it comes back as a false positive

I'm sorry your doctor has this attitude. They don't seem to be very helpful. Can you find another doctor or go to a lab and order the tests yourself?

Note: You have to eat at least half a slice of bread for 12 weeks prior to testing. 

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

And even if you test negative for celiac, you can have Non-celiac gluten sensitivity (=NCGS).

7 hours ago, Lizzy18 said:

Has anyone else had these symptoms or heard of them?? Any advice will help!

Based on your symptoms, I'd also consider Lupus (=an autoimmune disease).

https://resources.lupus.org/entry/common-symptoms

'Common symptoms of lupus

Because lupus can affect so many different organs, a wide range of signs and symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus (which are the same for men and women) are:

Extreme fatigue (tiredness)

Headaches

Painful or swollen joints

Fever

Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)

Swelling (edema) in feet, legs, hands, and/or around eyes

Pain in chest on deep breathing (pleurisy)

Butterfly-shaped rash across cheeks and nose

Sun- or light-sensitivity (photosensitivity)

Hair loss

Abnormal blood clotting

Fingers turning white and/or blue when cold (Raynaud’s phenomenon)

Mouth or nose ulcers

Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.

You play an important role in helping your doctor manage your disease. Listen to your body, ask questions and stay involved.'

 

 

 

 

  

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6 hours ago, Gluten_free_01 said:

too many times it comes back as a false positive

actually, it doesn't. Your doctor does not know what they are talking about. Find another doctor who will test you. After you have had gluten daily for at least 12 weeks.

 

*Meant to quote OP, not gluten-free 01

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Hi Lizzy and welcome :)

12 hours ago, Lizzy18 said:

Has anyone else had these symptoms or heard of them?? Any advice will help!

I looked at photos of myself before removing gluten from my diet and was shocked by how puffy my face looked. I lost weight after going gluten-free quickly, I think most was water and maybe the swelling was also due to inflammation.

If you're celiac or ncgs gluten can affect you in many different ways. One thing this forum is good for is finding others who may have gone through the same experience: 

You can see from there that histamines may also be an issue. I know I had high IGE blood test, which suggested an allergic reaction ongoing. The skin tests where negative, but going gluten-free did massively help.

Given you've noted your reactions to going gluten free my suggestion would be to either do a gluten challenge and confirm celiac via a doctor,or asssume that you are either celiac or NCGS and avoid gluten completely. There's some hopefully helpful links here and also the forum faq sticked above.

Best of luck!

Matt

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"too many times it comes back as a false positive"

I didn't say that actually :) I was just quoting Lizzy (what her doctor said). 

Anyway, as we said, your doctor is not right, Lizzy. False positives are quite rare.  It seems like he/she is unwilling to test you. Sometimes doctors don't take this condition seriously unfortunately.

"Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac)"

http://www.cureceliacdisease.org/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives/ 

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1 hour ago, Gluten_free_01 said:

"too many times it comes back as a false positive"

I didn't say that actually :) I was just quoting Lizzy (what her doctor said). 

Oopsie, I grabbed the quote from the wrong spot. I know you don't think that!!!!!!!!!!!!!!!!!!! :unsure:

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