angioedema and night sweats

[Dark Angel]

I am waiting to have an endoscopy to test for celiac.  I have had anaphylactic reactions to foods and now multiple chemical sensitivities  requiring an inhaler.   This has all happened within the last year along with many other symptoms that seem related to celiac disease. I have  been following an autoimmune paleo diet since September which has been amazing but cannot reintroduce any foods d/t either intolerance or allergic reaction.  I am also concerned with night sweats that have started within the last month.   Has anyone else experienced this?  

[cyclinglady]

Did you already test positive on any part of the celiac blood panel?   I ask because in order to get tested for celiac disease, you must be consuming gluten for both the blood tests and the biopsies taken via endoscopy.  It sounds  like you are on a grain free diet.  

The anaphylactic reactions....has Mast Cell Activation been ruled out?  How do you currently manage?   

 

[Dark Angel]

I tried going back on gluten for the testing and had to stop first day because of angioedema.  So, no, I haven't tested positive and did wonder about the biopsies.  Where ever I am on the autoimmune spectrum, I know that gluten is a huge problem for me.  Thank you for the information and about mast cell activation.  I will ask.  As far as how I am managing, not well.  I carry an epi pen, benadryl and an inhaler.  And I am scared.  

[GottaSki]

Hi DarkAngel....increasing anaphylactic events to many triggers, both known and unknown is very scary.

I am not around here much anymore...but email alerts are still going to me regarding other food intolerances.  I wanted to add to cycling lady's suggestion regarding Mast Cell Activation.

An endoscopy may not result in positive celiac biopsies considering your inability to ingest gluten, but remains extremely necessary given your symptoms.  If at all possible eat at least one piece of glutenous bread or crackers per day for at least two weeks prior to endoscopy.

The truth is it can be very difficult to obtain positive lab results for mast cell activation, but it is possible.  Research Mast Cell disorders and ask your Gasterenterologist if they are familiar with mast cell stainings.  The most important thing is that 6-8 samples of the duodenum are taken during the endoscopy.  It is preferable to have all celiac and mast cell test orders placed with the samples, but it is possible to add additional testing at a later date.

If your allergist or primary will order 24 hour urine to test for mast cell mediators....it is essential that the sample stay chilled throughout the entire process from you collecting and lab processing/sending on to other lab....this is the most frequent reason for false negatives.

Hereditary Angioedema is another possibility.  

Hang in there and read all you can to help your doctors find proper treatment.

 

[cyclinglady]

Well, you could have celiac disease,  a wheat allergy, or both.  Because of your reaction (angioedema) , I would not recommend a gluten challenge for getting a celiac diagnosis.   You could be tested for a the wheat allergy though.    What does your doctor say?  In any case, your best defense might be to remain gluten free for life!  Read our Newbie 101 section for tips under the "Coping" section of the forum.  

How old are you?  Night sweats can be due to perimenopause.  Again, this needs to be checked by a medical doctor.  

 

[cyclinglady]

9 minutes ago, GottaSki said:

Hi DarkAngel....increasing anaphylactic events to many triggers, both known and unknown is very scary.

I am not around here much anymore...but email alerts are still going to me regarding other food intolerances.  I wanted to add to cycling lady's suggestion regarding Mast Cell Activation.

An endoscopy may not result in positive celiac biopsies considering your inability to ingest gluten, but remains extremely necessary given your symptoms.  If at all possible eat at least one piece of glutenous bread or crackers per day for at least two weeks prior to endoscopy.

The truth is it can be very difficult to obtain positive lab results for mast cell activation, but it is possible.  Research Mast Cell disorders and ask your Gasterenterologist if they are familiar with mast cell stainings.  The most important thing is that 6-8 samples of the duodenum are taken during the endoscopy.  It is preferable to have all celiac and mast cell test orders placed with the samples, but it is possible to add additional testing at a later date.

If your allergist or primary will order 24 hour urine to test for mast cell mediators....it is essential that the sample stay chilled throughout the entire process from you collecting and lab processing/sending on to other lab....this is the most frequent reason for false negatives.

Hereditary Angioedema is another possibility.  

Hang in there and read all you can to help your doctors find proper treatment.

 

I just gave conflicting advice regarding a gluten challenge to Dark Angel.  Frankly, I would be scared to death to trigger Angioedema if it is affecting her throat in order to get a celiac diagnosis or even samples of mast cells in the GI track.  Can she just go for the mast cell diagnosis first and injest wheat/gluten in the doctor's office?   Test for celiac disease later (if that is even possible or necessary?)

i would think finding a GI who know about mast cell disorders and celiac disease first and consulting with him  before undertaking a gluten challenge two weeks prior to an endoscopy is critical.   Do the urine collection test and try to get serum triptase levels first.  Worry about a formal celiac diagnosis later if ever....

Maybe I am off base, but I can handle hives, itching, rashes, vomiting, ab pain, passing out, but personally taking a known trigger (ibuprofen or aspirin) knowing my face and throat are going to swell (it does) is never going happen.  

We  do not know the whole picture here.  I wholeheartedly agree that Dark Angel needs to research and help her doctors to help her.  Maybe it is late and I am not understanding.

Dark Angel, what does your doctor (who issued you the epi pen) say?  

 

[GFinDC]

Just posting a little Wiki info for the benefit of the less informed on angioedema, like me.

Open Original Shared Link

Angioedema, also known as angiooedema, Quincke's edema, and angioneurotic edema, is the rapid swelling (Open Original Shared Link) of the Open Original Shared Link, Open Original Shared Link,^{Open Original Shared Link}Open Original Shared Link and submucosal tissues. It is very similar to Open Original Shared Link, but urticaria, commonly known as hives, occurs in the upper dermis.^{Open Original Shared Link}

Cases where angioedema progresses rapidly should be treated as a Open Original Shared Link, as Open Original Shared Link and Open Original Shared Link can occur. Open Original Shared Link may be life-saving when the cause of angioedema is allergic. In the case of hereditary angioedema, treatment with Open Original Shared Link has not been shown to be helpful.

Classification

Angioedema is classified as either hereditary or acquired.

Acquired angioedema (AAE) can be immunologic, nonimmunologic, or idiopathic.^{Open Original Shared Link} It is usually caused by Open Original Shared Link and occurs together with other allergic symptoms and Open Original Shared Link. It can also occur as a side effect to certain medications, particularly Open Original Shared Link. It is characterized by repetitive episodes of swelling, frequently of the face, lips, tongue, limbs, and genitals. Edema of the gastrointestinal mucosa typically leads to severe abdominal pain; in the upper respiratory tract, it can be life-threatening.^{Open Original Shared Link}

Open Original Shared Link (HAE) exists in three forms, all of which are caused by a genetic mutation inherited in an Open Original Shared Link form. They are distinguished by the underlying genetic abnormality. Types I and II are caused by mutations in the SERPING1 gene, which result in either diminished levels of the Open Original Shared Link protein (type I HAE) or dysfunctional forms of the same protein (type II HAE). Type III HAE has been linked with mutations in the F12 gene, which encodes the coagulation protein Open Original Shared Link. All forms of HAE lead to abnormal activation of the Open Original Shared Link, and all forms can cause swelling elsewhere in the body, such as the Open Original Shared Link. If HAE involves the Open Original Shared Link, it can cause life-threatening Open Original Shared Link.^{Open Original Shared Link} The pathogenesis of this disorder is suspected to be related to unopposed activation of the contact pathway by the initial generation of kallikrein and/or clotting factor XII by damaged endothelial cells. The end product of this cascade, bradykinin, is produced in large amounts and is believed to be the predominant mediator leading to increased vascular permeability and vasodilation that induces typical angioedema "attacks".^{Open Original Shared Link}

[GottaSki]

Not sure I used the quote feature correctly.

perhaps I wasn't clear...I believe the endoscopy is an essential component of diagnosing mast cell disease.  It can be very difficult to find a Gasterenterologist that has accurate and up to date knowledge of both celiac disease and mast cell disorders.

Blood, Urine, Endoscopy and Bone Marrow  should all be utilized as needed to identify mast cell disorders.

I said get the celiac biopsy regardless of ability to ingest gluten since dark angel has this in the works and IF able, ingest small amount of gluten.  If an endo is happening...be sure to get orders for mast cell staining....not always an easy thing.

As you said...we don't have all the details, I popped in because it took a very long time for me to be accurately diagnosed.  Had all of my six endoscopies had proper orders it could have given me a much better past seven years.  I saw a similar presentation to mine and offered what I hope is a fast forward to the frustrating process of Mast Cell and Celiac testing.

Good Luck Dark Angel!

PS..Great definition of HAE there Paul!  For quite some time it was thought our family may have another yet to be typed HAE...seeing as we are negative FactorXII and have three generations presenting with angioedema ....turns out it was all too many mast cells in the mucosal layer of the small intestine.

[cyclinglady]

22 minutes ago, GottaSki said:

Not sure I used the quote feature correctly.

perhaps I wasn't clear...I believe the endoscopy is an essential component of diagnosing mast cell disease.  It can be very difficult to find a Gasterenterologist that has accurate and up to date knowledge of both celiac disease and mast cell disorders.

Blood, Urine, Endoscopy and Bone Marrow  should all be utilized as needed to identify mast cell disorders.

I said get the celiac biopsy regardless of ability to ingest gluten since dark angel has this in the works and IF able, ingest small amount of gluten.  If an endo is happening...be sure to get orders for mast cell staining....not always an easy thing.

As you said...we don't have all the details, I popped in because it took a very long time for me to be accurately diagnosed.  Had all of my six endoscopies had proper orders it could have given me a much better past seven years.  I saw a similar presentation to mine and offered what I hope is a fast forward to the frustrating process of Mast Cell and Celiac testing.

Good Luck Dark Angel!

PS..Great definition of HAE there Paul!  For quite some time it was thought our family may have another yet to be typed HAE...seeing as we are negative FactorXII and have three generations presenting with angioedema ....turns out it was all too many mast cells in the mucosal layer of the small intestine.

Thanks for clarifying!  I know that you and Jebby are the MCAS or MCAD experts!  ?

[Dark Angel]

Thank you, everyone for all the information.  It will help me move forward in navigating the system which has been extremely challenging.  

[Dark Angel]

I finally received a diagnosis.  I tested positive for Lyme Disease and two other tick associated infections.   It explains everything for me and wanted to thank everyone for their support.