Anaphylaxis and Celiac?

[AGeorges]

Hi,

I am recently diagnosed Mar 2021 through biopsy and blood work (doctors were actually looking for Eosinophilic Esophagitis). 
 

My symptom set is very strange. Bloating and IBS. But mostly symptoms that mask Mast Cell Activation Syndrome which I have been tested extensively for and am negative.

My immunologist seems to think that the celiac can be the answer to all my idiopathic anaphylaxis and spontaneous chronic urticaria which presents in its most extreme form— as anaphylaxis. Although two weeks ago my severe reaction to my first Covid shot threw him off. I see him this week to defend myself on that front— he wanted to call it a panic attack. Le sigh,

Just wondering if anyone has heard of celiac presenting this way.

Just being off gluten for the past six weeks has been amazing. I didn’t realize how much my body hurt and I even went through a full cycle without having a PMS migraine! My brain doesn’t feel claggy, I don’t have to lay down each afternoon and I am just a happier person. My frustration tolerance has gone up as well. I hope the next big change is losing the 20 pounds I have been trying to lose for the past five years.

can anyone speak on weight loss?  
 

thanks! 

[Scott Adams]

It seems unlikely that celiac disease would be related in any way to anaphylaxis, however, I can say that after I went gluten-free my chronically clogged nose, which was from both pollen and food allergies, cleared up--this hadn't happened ever without allergy medicine. This makes me wonder if the fact that my immune system was so busy overreacting to gluten that it was also affecting my allergic reactions...who knows, but I did see vast improvement in my allergies after going gluten-free to the point that I even stopped taking allergy shots.

As far as weight loss goes, I've seen this go either way. Some people with villi damage who were underweight tend to gain weight after going gluten-free, and some who were overweight and ate too much because they always felt like they were starving (and actually were!) tend to lose weight.

[AGeorges]

Thanks Scott.  My immunologist hopes that healing from celiac will eliminate my symptoms. He does see a connection between mast cells (white blood cells responsible for allergic responses) and celiac. He quoted emerging research on the subject that overly simplified says that mast cells can gather or "over-produce" in areas that have inflammation due to autoimmune disease.  Hypersensitive mast cells or too many mast cells can cause big problems-as I am well aware. Mast cells are present in the bladder, gut, throat, skin--which could be the explanation for why celiacs have such a wide range of symptoms. 

There is an interesting research article on the topic that is very complex and technical. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/

Fortunately, my chronic spontaneous urticaria is greatly reduced after only having been off of gluten for about 6 weeks. 

I think this explanation would explain your chronic allergies clearing up. 

 

[Scott Adams]

It sounds like you have a great doctor, and thank you for the link...we'll try to summarize this research in an article. It makes me wonder which came first, in my case I suspect it was gluten sensitivity that led to chronic issues with allergies, and finally full blown celiac disease after I got very ill from possible food poisoning or a virus. I wonder how many other people have chronic allergies that might be caused by gluten sensitivity and mostly go away if they went gluten-free? Perhaps some could avoid ever getting full blown celiac disease? 

[NicoleMRejc]

On 4/26/2021 at 7:44 PM, AGeorges said:

Hi,

I am recently diagnosed Mar 2021 through biopsy and blood work (doctors were actually looking for Eosinophilic Esophagitis). 
 

My symptom set is very strange. Bloating and IBS. But mostly symptoms that mask Mast Cell Activation Syndrome which I have been tested extensively for and am negative.

My immunologist seems to think that the celiac can be the answer to all my idiopathic anaphylaxis and spontaneous chronic urticaria which presents in its most extreme form— as anaphylaxis. Although two weeks ago my severe reaction to my first Covid shot threw him off. I see him this week to defend myself on that front— he wanted to call it a panic attack. Le sigh,

Just wondering if anyone has heard of celiac presenting this way.

Just being off gluten for the past six weeks has been amazing. I didn’t realize how much my body hurt and I even went through a full cycle without having a PMS migraine! My brain doesn’t feel claggy, I don’t have to lay down each afternoon and I am just a happier person. My frustration tolerance has gone up as well. I hope the next big change is losing the 20 pounds I have been trying to lose for the past five years.

can anyone speak on weight loss?  
 

thanks! 

Hi! I have a very similar story. I have, since I was very young, had random bouts of anaphylaxis. I have anywhere from 5 to 10 episodes per year. They are almost always in the middle of the night, and the symptoms are always exactly the same. I awaken to severe abdominal cramping which turns into a trip to the washroom. I then get hot and itchy from my shoulders to my ears. My eyes swell, and then I cant breathe. I wheeze, gasp and cough and It lasts anywhere from 10 minutes to 40 minutes. Inhalers help but do not completely stop the attacks which are sometimes severe...I was hospitalized once, requiring cpr and paramedics. There is no common trigger and they generally happen several hours after ingesting anything at all. 

I have seen many doctors and was originally diagnosed with generalized anxiety disorder and asthma. Both of those have since been ruled out as the cause of these attacks. In my last attempt to figure out what was going on, I saw a very good allergy specialist who tested me for everything under the sun. He ran blood work, urine etc. He found that my malabsorption numbers were extremely high (699) so he ordered an endoscopy and confirmed my celiacs. 

So I removed gluten from my diet but unfortunately the anaphylaxis continues. I have looked into mast cell disorders as well. I have never found anyone else who deals with this so I was relieved to see your post and would love to talk more about your experiences!

[knitty kitty]

Mast Cell degranulation has been connected to thiamine deficiency!

A scientific study....

"Increased mast cell degranulation within thalamus in early pre-lesion stages of an experimental model of Wernicke's encephalopathy"

https://pubmed.ncbi.nlm.nih.gov/10411347/

And an article by Dr. Derrick Lonsdale, leader in thiamine deficiency studies...

"An Unusual Treatment for Asthma"

https://www.hormonesmatter.com/asthma-a1at-deficiency-thiamine/

 

 

[GodsGal]

On 4/26/2021 at 9:44 PM, AGeorges said:

Hi,

I am recently diagnosed Mar 2021 through biopsy and blood work (doctors were actually looking for Eosinophilic Esophagitis). 
 

My symptom set is very strange. Bloating and IBS. But mostly symptoms that mask Mast Cell Activation Syndrome which I have been tested extensively for and am negative.

My immunologist seems to think that the celiac can be the answer to all my idiopathic anaphylaxis and spontaneous chronic urticaria which presents in its most extreme form— as anaphylaxis. Although two weeks ago my severe reaction to my first Covid shot threw him off. I see him this week to defend myself on that front— he wanted to call it a panic attack. Le sigh,

Just wondering if anyone has heard of celiac presenting this way.

Just being off gluten for the past six weeks has been amazing. I didn’t realize how much my body hurt and I even went through a full cycle without having a PMS migraine! My brain doesn’t feel claggy, I don’t have to lay down each afternoon and I am just a happier person. My frustration tolerance has gone up as well. I hope the next big change is losing the 20 pounds I have been trying to lose for the past five years.

can anyone speak on weight loss?  
 

thanks! 

I had an appointment with an allergist. He told me that it is possible to have both celiac (which I do have) and a wheat allergy (got a negative blood test on that one). If someone has a wheat allergy that could cause any kind of allergic response, including anaphylaxis. I would assume that the same would be true of the other "gluten grains" as well.