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Effects Of Severe Ige Allergies On Mast Cells And Autoimmunity


Katybug
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Hi All,

My immunologist and I recently backtracked through my records. He realized that although we did food allergy blood tests, we did not do food allergy skin tests. He said he felt like this was a gap in my diagnostics as I am so highly allergic to environmental/inhalant allergens. So, we did 3 weeks of food allergy skin patch testing. Wouldn't you know it....of the 40 foods that were tested, I am allergic to 36! It includes all grains including rice and corn, dairy, eggs, shellfish, many fruits and vegetables. I am not allergic to (of all things) tuna, flounder, chicken, and beef. I don't like fish so I never eat it. I just finished the testing this week, so we will be discussing a plan of attack this coming Tuesday. In the meantime, he told me to read the articles I will attach below. He said he thinks that I might have severe enough IgE mediated allergies, that it has actually morphed into an autoimmune disease which is why he wanted me to read these particular articles. They are very interesting and I thought may be of value to others here on the forum. Hope it helps someone. I should add that this is all brand new information to me so I may not be of great help in ansering questions...yet. But ask away and I'll take any questions I get to the doc for more info.

http://www.sciencedirect.com/science/article/pii/S1074761301001595

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3412263/#__ffn_sectitle

http://e-aair.org/DOIx.php?id=10.4168/aair.2012.4.6.332

http://www.discoverymedicine.com/Barbara-Dema/2014/05/22/advances-in-mechanisms-of-systemic-lupus-erythematosus/

Katie

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Hi Katie

Would your IgE levels need to be low or extremely high with this medical condition. These are very interesting articles. I just skimmed through a couple of them but it made me think about Tyler's past test results.

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Well this makes me think, I'm going to have to dig out my past medical records which will not be easy cause there's a ton, but I remember years back well before they knew what was going on with me I think I had a test that showed my IGE, IGG, or something close to that was about 1200 and the doctor said 100 is normal. Would anyone know when she says "severe enough IgE mediated allergies" if it's possible that's the same IGE test?

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Thank you for the articles, Katie. Great find! I am waiting for blood test result for allergies, having a flare, suspected MCAS, and just diagnosed with asthma. I am also highly allergic to environmental/inhalant allergens. Some more tests to ask about.

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I do know that this is not based on IgE levels. It's more about how your IgE reactes to allergens and if there becomes a constant reaction it can become autoimmune in nature. In the meantime, it is also having lasting effects on our mast cells which, from what I take away from the articles, allows them to be more potent and have a longer "shelf life". I did have enough time to ask the doc on Tuesday if there is testing to figure out if this is the issue. He said it exists but it isn't something he can write an order for and then have me go to Quest or Labcorp for the blood draw. He said we're going to have to figure out what specialty lab I will need to go to for the testing. When I find out what this testing is and where it can be done, I'll be sure to update this info.

Yes, when he originally brought this up, I asked if the skin tests are more accurate vs. the blood tests and he said they are much more accurate. My blood tests showed I had only mild allergies to 2 of these same foods.

Just to clarify, I don't present like I'm allergic in the classic sense. For example, I don't get sniffles or itchy eyes from pollen but I'm highly allergic upon testing. I don't have typical food allergy responses such as itchy mouth/throat or swelling of my tongue or throat. But, we think, for example, my severe GI symptoms (daily nausea, occasional vomiting, daily diarrhea, abdominal pain) may be one way that my allergies are expressed. It does make sense that if I'm allergic to things I'm inhaling in the environment and if I'm allergic to literally everything I'm eating, I would have a constant inflammatory problem. And, no doctor has been able to explain these inflammatory type symptoms to this point. My GI doc has unfortunately witnessed how violent my gi issues can be but he has run all the diagnostics (some 2x ) and nothing shows up other than some mild gastritis but nothing to explain the severity of my symptoms. It's not Celiac disease but in my mind I am kind of thinking it is a similar phenomenon just with many more foods involved. I also have a long list of different types of rashes and skin issues that are only marginally helped by antihistamines. My symptoms ( all of them, even my low bp) are also helped a great deal each time I take a round of prednisone. So, all of these clues lead me to believe that we may have finally found the origin of my problems....I'm like a giant walking allergic reaction.

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Went to immunologist today for follow up on this issue. He asked around at the immunology conference he went to last week and so far all this "testing" is all laboratory twsts not available for patient use. (The story of our lives.) He said he ran my situation by a few colleagues and they agreed that we should throw everything we've got in the way of treatment at this situation. So, I am going back to gluten free, corn free, rice free, and nut free diet. Basically, I can eat dairy, fruit, veg, and meat. I am also going to restart Xolair shots which targets IgE once we get an issue straightened out with the specialty pharmacy. We are also going to do a predinisone burst. After. The burst, as soon as I experience an uptick in symptoms again, we will do another dhort 4 day burst to see if that controls symptoms. We're going to have to see what kind of schedule of prednisone will keep the inflammation calmed down without it causingan aadverse reaction in me. I will continue my allergy shots for environmental allergies and my H1 & H2 antihistamines.

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I too have severe inhalant allergies from mostly grasses, so many potsys have this it is not a coincidence. I wear a dust mask when taking clothes off the line to stop the flashing lights in my vision that signal to me that histamine is getting too high. I've been eating grain free the last 6 weeks and pots is a bit better, it could be related?

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Having reread the articles and after talking to the doc, his overwhelming message was this: It was long belief the IgE mediated disease was simply an easy allergy situation to treat. Now, there is an overwhelming amount od scientific evidence that shows IgE mediated disease is extremely complicated and can have far reaching consequences that the medical community didn't understand. And, that IgE mediated disease is so complex that it can look very different from one patient to the next and it can be debilitating.

I can only back up the argument by saying I did show improvement when I was on the Xolair before. It was a long, gradual improvement but it happened nonetheless. The only treatment that has ever made me feel healthy (as in back to normal healthy ) has been prednisone....another immunosuppressive. So this is the closest any doc has come to having a viable explanation (with real proof in the former of my skin testing) for a root cause to my disease.

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  • 1 year later...

Thanks for posting these Katybug and your experience. I had ruled out mast cell issues and allergies as an underlying cause or contributor because of my lack of classic allergy symptoms, this has made me rethink.

Hi barb10. I know that this is an old post, but I picked up on it today as I am still looking into MCAD/MCAS and histamine intolerance. I am having more issues with food and so many other symptoms. I tried taking H1 and H2 and felt awful, so I am now taking a more natural approach with more supplements. My diet has already been changed to a low histamine one.

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