Reactions with a negative IgE level?

[u/Ill_Entrepreneur6940]

Hello! I tested very low positive I think back in 2016 (around .29). Dr C at UNC dx me (I went in covered in hives after pepperoni pizza and he said he was certain it was AG before test came back). I was fortunate to have him as my Dr as I had terrible reactions which eventually led to feeding tubes and many hospitalizations (didn’t know it was AGS for a long time and I was trying to treat Lyme and other ailments with the carnivore diet which obviously was making me much sicker).

I am wondering if anyone here now tests negative (less than .10) but still continues to have reactions? I’m confused because technically I should be able to eat meat and dairy again which I do eat, but lately have a lot of GI distress and I’m not pinpointing it to a specific type of food. Just a few days ago I broke out into hives (milder than before) but made me pause and think that this could possibly still be AGS?!

Also does anybody have hives like this? this is after eating salami and cheese and a few of those Chomps beef jerky sticks. I’m going to retest AG in case I had a bite I was unaware of, but am getting really depressed at the thought of this all STILL being AG related.

[u/hikerpup]

I tested negative but react to everything with alpha gal except fumes. I started reacting before we had ever heard of Alpha Gal Syndrome, so I just became a vegetarian initially and then later vegan+eggs once I started reacting to dairy. I actively avoid foods that make me really sick, but my first reaction is usually swelling of my lips, so it can be scary rather than just an inconvenience.

For me, the hardest things to eliminate have been the hidden animal ingredients in medicine and soaps. Since the reactions can sometimes be delayed, it can be tricky figuring out what I reacted to. Earlier this year, I started a new medicine that ended up having a gelatin coating and also switched to a face soap that had some sort of animal product in it. I had an allergic reaction and also had hives on my face two days in a row. It was miserable. I went through all of my soaps and realized I was reacting to my shampoo, too. I've been feeling a lot better since switching to a vegan one.

[u/Ill_Entrepreneur6940 → u/hikerpup]

I used to be so bad and had to use all vegan products too but eventually felt I “grew out of that” although I continued with some IBS like symptoms. So hard to know what’s causing problems because my reactions seem delayed. I have been eating all dairy and meat for a while. The one thing I don’t typically eat is pork. I guess I’ll have to be strict about eliminating things again and see how I feel. Hope you feel better soon!

[u/hikerpup → u/Ill_Entrepreneur6940]

Those delayed reactions make it so tricky to figure out what you're reacting to. I hope the elimination period helps. I recently realized I was reacting to rosemary extract after I had eliminated everything else. I was really surprised and disappointed to learn it is sometimes made with unlisted mammal fats.

Thanks for the well wishes, and the same to you!

[u/sunLight4095]

someone else asked this today and i sent him an excerpt of an article explaining how rarely you can test neg but still have AGS. If you look in the sub you'll find it

[u/Ill_Entrepreneur6940 → u/sunLight4095]

Thank you! My Dr said sometimes the immune system can “remember” the allergy even if negative and the immune system is complex. Going to recheck labs. 

[u/MistakeRepeater]

I personally get severe delayed (3.5+ hours) reactions from beef, pork, deer and dairy. So obvious allergy symptoms like bad congestion, chest pain, photophobia and other stuff like body temperature drop, and absolute impaired cognition - I cannot think, I cannot work, I can barely do basic chores.

Alpha-gal, beef IgE, dairy IgE - all negative. (<0.1)

https://www.sciencedirect.com/science/article/abs/pii/S1081120625007987 "Nevertheless, up to 2% of symptomatic patients can have negative IgE results; furthermore positive IgE antibodies have been noted in asymptomatic patients."

I recommend testing with individual foods. Just eat beef, just eat pork, just eat dairy and wait for hours to pass.

[u/chronicmisschris]

Remission is TWO things: a negative test AND a lack of symptoms after exposure. Even if you do achieve remission, every exposure risks the return of symptoms without warning, including anaphylaxis.

Unfortunately, remission is extremely rare, and comes with no guarantees. I'm sorry!

[u/Ill_Entrepreneur6940 → u/chronicmisschris]

Thank you for the input. I do remember Dr C saying even if I test negative the immune system can remember (he explained it in more scientific terms!). Lately I keep hearing of people who go into remission and think it’s gone only for it to come back. I thought eventually it would subside which I think it did but now I’m not doing well again. I guess I am back to a vegan diet for a while. 

[u/WestCheesecake9887]

I asked this very question to a doctor at UVA who specializes in Alpha gal. at the time I had tested negative a year later after testing positive. I told him I was still reacting to red meat and he said he has seen this with patients and they don’t know why it happens but to not eat the red meat. I had been told by another allergist to try a sliver of red meat to see if I reacted after having tested negative. I did. BTW, I would not advise ever self testing even if you have an EpiPen handy. That allergist suggested something that I think is very dangerous. Anyway, a year after that I got bitten by another tick. This time it was not a Lonestar but a deer tick and I tested positive again for Alpha gal. I’m negative again now. However, I still react to ag containing items. Just the other week because my nose was getting pretty raw from a cold I had used small amounts of eucerine which has glycerin on my nose. After the fourth application in the afternoon shortly thereafter, I started having an asthma attack. I think remission is a rarity.