Angioedema - Face and Lip Swelling

[Diana07]

Hoping someone can help !!

 Has anyone had angioedema, tongue, lip and face swelling? I have over the past 3 month cheated eating gluten every once now and then as I had a surgery that put me non mobile for 9 weeks. Over this time I have had cases of swelling, take Benadryl, Zyrtec, and epi pen. All my docs say that its not gluten causing it, as its not immediately. I beginning to disagree as its just been over the last 3 months that I had 3 different swellings.

I have been through all allergy testing and been to Cleveland Clinic.

I tested positive 12 years ago with no GI problems, 6 years ago DH with biopsy but I have never had a positive endoscope.

I know that if eating 100% gluten free is what I need to be doing, so that is not what I’m questioning. Just wanted to know if anyone else has Angioedema and if it was caused by Gluten?

 

Thanks

[trents]

That sounds more like an allergic reaction to gluten or something rather than a Celiac reaction to gluten. You could be allergic to wheat (or the gluten in it) and also have Celiac disease. Were you eating gluten free when you had the endoscopies? If so not, that would explain the negative endoscopies. I'm assuming when you say you tested positive 12 years ago you are referring to the antibody testing for celiac disease.

Edited December 3, 2020 by trents

[Diana07]

Yes to the endoscopy..I just wish there was a confirming test for this tongue and face swelling. As it doesn't happen immediately 

[trents]

Sorry, I mistyped. I meant to say if your were not eating gluten regularly before the endoscopies that would explain the negative results.

[ch88]

It is possible to have a delayed allergic response to wheat: As wheat is broken down in the digestive tract it can cause an allergic response. I haven't heard about delayed face or lip swelling after eating wheat. That sounds less likely to me but I don't know. What I read about was that some people can eat wheat fine (at first) and then when they exercise they get an allergic reaction. 

[AlwaysLearning]

I sometime have this if I eat something salty, but it is normally in combination with something else, such as gnawing on a toothpick that is made with tea tree oil (endocrine disruptor) that has already caused irritation in my mouth. For me, it is not a true allergic reaction, just a reaction.

You could also look into histamines. Your body produces them normally and you can get more from the food you eat. If you have too many in your system, you can start having allergic reactions even if you aren't allergic. High histamine levels normally come with hyperthyroidism - when the thyroid is overproducing hormones that speed up your body's systems, such as how much histamine it produces. 

Celiac has been linked to thyroid issues, but if you are high on histamines already, avoiding foods high in histamines can manage the risk of having random allergic reactions. But finding out why your histamines are high is also a good idea. 

[trents]

High histamine levels can be caused by the body producing insufficient DAO. You can purchase DAO supplements but they aren't cheap. Another approach is to avoid foods that are high in histamines such as pickled and fermented products. I would suggest you research "histamine intolerance" to find out more. The term is really a misnomer because the problem is really high histamine levels, not an intolerance of histamines. But that is they call it.

[Diana07]

On 12/4/2020 at 12:05 AM, trents said:

High histamine levels can be caused by the body producing insufficient DAO. You can purchase DAO supplements but they aren't cheap. Another approach is to avoid foods that are high in histamines such as pickled and fermented products. I would suggest you research "histamine intolerance" to find out more. The term is really a misnomer because the problem is really high histamine levels, not an intolerance of histamines. But that is they call it.

Yes to the endoscopy..I just wish there was a confirming test for this tongue and face swelling. As it doesn't happen immediately 

 

Thank you very much, I will look into that as it has never been brought to my attention. 

[Lara C]

On 12/3/2020 at 9:53 AM, Diana07 said:

Hoping someone can help !!

 Has anyone had angioedema, tongue, lip and face swelling? I have over the past 3 month cheated eating gluten every once now and then as I had a surgery that put me non mobile for 9 weeks. Over this time I have had cases of swelling, take Benadryl, Zyrtec, and epi pen. All my docs say that its not gluten causing it, as its not immediately. I beginning to disagree as its just been over the last 3 months that I had 3 different swellings.

I have been through all allergy testing and been to Cleveland Clinic.

I tested positive 12 years ago with no GI problems, 6 years ago DH with biopsy but I have never had a positive endoscope.

I know that if eating 100% gluten free is what I need to be doing, so that is not what I’m questioning. Just wanted to know if anyone else has Angioedema and if it was caused by Gluten?

 

Thanks

My experience is exactly the same as yours and I think unlikely to be an allergy. I have not been differentially diagnosed as Celiac vs. IBS - probably IBS based on the spectrum of foods I must avoid.  Either way, I wonder about the reason for the lip swelling as well. 

[Wheatwacked]

Hi Lara C, welcome to the forum. This is an older thread so you may not get an answer from Diana07.

Celiac Disease is often misdiagnosed as IBS. Here's a weird comment I found that strikes me as medical newspeak: 

"While IBS and functional dyspepsia are not considered autoimmune ailments, there is reason to believe that some sort of immune system dysfunction might be involved in their development."

You can start a new topic with more specifics. What tests done, gluten free, symptoms, etc.

Tne research shows low vitamin D levels are associated with IBS and It has since been found that 82% of IBS sufferers are also low in vitamin D (less than 20 ng/mL).

Persistant Low vitamin D, which 42% of Americans have is the common factor between virtually all metabolic and autoimmune diseases. We evolved to survive on a plasma D25 level of 80 ng/ml. In summer we store it up for the winter low UV months.  The medical cutoff point of 29 mg/ml ( equivelant to 72 nmole/L) as sufficient is absurd. Such a low level of the hormone vitamin D is in my opinion the primary cause of the "mysterious" compromised immune system epidemic rampant in the industrialized world. 

 

Edited April 10, 2023 by Wheatwacked

[Rick Sanchez]

On 12/3/2020 at 9:53 AM, Diana07 said:

Hoping someone can help !!

 Has anyone had angioedema, tongue, lip and face swelling? I have over the past 3 month cheated eating gluten every once now and then as I had a surgery that put me non mobile for 9 weeks. Over this time I have had cases of swelling, take Benadryl, Zyrtec, and epi pen. All my docs say that its not gluten causing it, as its not immediately. I beginning to disagree as its just been over the last 3 months that I had 3 different swellings.

I have been through all allergy testing and been to Cleveland Clinic.

I tested positive 12 years ago with no GI problems, 6 years ago DH with biopsy but I have never had a positive endoscope.

I know that if eating 100% gluten free is what I need to be doing, so that is not what I’m questioning. Just wanted to know if anyone else has Angioedema and if it was caused by Gluten?

 

Thanks

Just a maybe, aspirin and aleve can both cause that.  Just personal advice, stay clear away from naproxin-sodium (aleve), and aspirin only if needed for your heart health.  My goto is ibuprofen. Ibuprofen, benadryl, a single Tylenol, and a cup of coffee if I get glutened, and it sucks that it takes all that to work as well as an aleve, but in my humble opinion, it should not be on the market.

If you are taking either Aspirin or Aleve, try staying off of them a couple weeks, could be, and any easy step in the trouble shooting.