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What is the difference between food allergy and food sensitivity?

Posted by jenlemon @jenlemon, Mar 27 7:42pm

Help me understand whether this could be a food sensitivity or a food allergy:

tl;dr: I get joint pain in my wrists, a rash on my hands, and a red, itchy neck when I eat gluten. I tested negative for celiac disease, but it and thyroid disease run in my family. I’ve been eating gluten-free for almost two years. I recently developed the same neck and wrist symptoms when I eat dairy, so I’ve given that up as well. Is this a food allergy, or a food sensitivity? And I should probably be worried about leaky gut, right? What are the chances I'll continue to lose more and more food groups?

Background:

My mom was diagnosed with celiac in 2021 or 2022 in her late 50s or early 60s. At least one cousin and aunt also have celiac and thyroid diagnoses.

I thought I had dodged all the problems until late 2022. I started getting a red, itchy neck. I also had some issues with runny stools and urgent bowel movements. I read that many first degree relatives can have asymptomatic celiac disease, so I decided to get tested eventually. However, I didn’t have a primary care doctor at the time and was too busy.

February-May of 2023 was probably the most stressful period of my life, as my workplace was undergoing a hostile takeover, I was one of the last members of leadership left, and I was job searching and moving halfway across the country.

The itching was getting worse, but I knew if I stopped eating gluten before getting tested, the test would not be accurate. Then, during the worst of the stress, my wrists started hurting. For a week it got worse and worse, then the pain started traveling up my arms. At that point, I went to Lab Corp and got the celiac test. It came back negative, I cut out gluten, the wrist pain was gone within days, and my mild digestive issues went away. When I ate gluten for a day, and the symptoms immediately returned.

Since then I figured I have Non-Celiac Gluten Sensitivity, but I haven’t pursued a diagnosis, and sometimes I wonder if the test was accurate, since I wasn’t eating that much gluten at the time.

When I have had gluten by accident, I get small red dots all over the backs of my hands, my wrists hurt, and/or my neck itches and turns red. Once I thought, “maybe I’m not sensitive anymore” and ate a breadstick, and my hands had the red rash for a week.

Recently I started to notice my neck itching again. This was the first symptom I noticed with gluten. I didn’t think I was getting glutened by mistake.

I cut out dairy as an experiment, and the itching went away within a few days. When I had some dairy, the itching came back and my wrists started hurting. This happened even with gluten-free cornbread containing a little buttermilk.

I’ve now cut out dairy, but I’m concerned that I might have ongoing gut issues or “leaky gut,” and that other food groups might be next. I’m also concerned about eventually developing celiac disease—if I don’t already have it—or other autoimmune diseases.

I’m also confused about what to call this, and I haven’t found much online. Some reputable sources say that a food allergy is very dangerous, involves the immune system, and can cause anaphylaxis. I’ve never come close to having breathing problems from food that doesn’t seem to fit. But the websites said a food sensitivity or intolerance mainly involves the digestive system, like lactose intolerance, which doesn’t seem to fit either since I have symptoms in my skin and joint pain.

What do you think is happening, and would it be considered a food allergy? I don’t think my primary care physician is very knowledgeable about this, since she told me I could be tested for celiac without eating gluten.

Appreciate any input!

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Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago
In reply to @sueinmn "You said, "...I know if it's an allergy.. if my throat starts to swell shut...then uh..." + (show)
@sueinmn

You said, "...I know if it's an allergy.. if my throat starts to swell shut...then uh oh...time to pray fervently!!" Do you carry an EpiPen or other epinephrine device?
We have generations of family with severe environmental and food allergies. EpiPens and Benadryl tablets are in the purse or backpack of every adult and most teens. Our immediate response to a severe reaction is to have the person chew (don't swallow) 2 Benadryl tablets and keep them under the tongue, where they act quickly. It has allowed us to skip "The Pen" many times and avoid the follow-up trip to the ER. If the reaction continues to get more severe, we never hesitate to use the epinephrine.
We learned about using Benadryl from an EMT, since their kits are not equipped with an Epinephrine kit.

Jump to this post

Hi, @sueinmn - I wanted to clarify if the EMT suggested chewing diphenhydramine (Benadryl) chewable tablets or just the regular tablets?

REPLY
1 reply
standinginfaith | @standinginfaith | 1 day ago
In reply to @sueinmn "You said, "...I know if it's an allergy.. if my throat starts to swell shut...then uh..." + (show)
@sueinmn

You said, "...I know if it's an allergy.. if my throat starts to swell shut...then uh oh...time to pray fervently!!" Do you carry an EpiPen or other epinephrine device?
We have generations of family with severe environmental and food allergies. EpiPens and Benadryl tablets are in the purse or backpack of every adult and most teens. Our immediate response to a severe reaction is to have the person chew (don't swallow) 2 Benadryl tablets and keep them under the tongue, where they act quickly. It has allowed us to skip "The Pen" many times and avoid the follow-up trip to the ER. If the reaction continues to get more severe, we never hesitate to use the epinephrine.
We learned about using Benadryl from an EMT, since their kits are not equipped with an Epinephrine kit.

Jump to this post

Thank you soo very much for that information!! I keep Benadyrl (the dye free kind) to use on my pets..in case of snake bites.. saved my Black Lab and another large dog from copperhead bites to the face and neck.. along with .. we call them "fish antibiotics"..when the vet was closed here.. I've never used my EpiPen yet.. thank goodness!! I'll be praying for you and God bless you!!

REPLY
standinginfaith | @standinginfaith | 1 day ago

Also..and I'm not for certain.. my sweet home health care nurse told me that you can tell if it is an allergic reaction by using one of those things they put on your finger tip at the doctor..Oximeter..(Amazon about $10-12) and if it goes below 92 you are starting to have an anaphylatic reaction..( my spelling is terrible..) so I got one..haven't used it for that yet.. but with a good hospital 45 minutes away..and not many ambulances out here..it could be handy!! But please don't rely on me for medical advice.I am just passing on suggestions usually I just turn on the Christian TV and pray while the annointing is strong here!!

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Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @lisalucier "Hi, @sueinmn - I wanted to clarify if the EMT suggested chewing diphenhydramine (Benadryl) chewable tablets..." + (show)
@lisalucier

Hi, @sueinmn - I wanted to clarify if the EMT suggested chewing diphenhydramine (Benadryl) chewable tablets or just the regular tablets?

Jump to this post

Chewing ANY Benadryl does the same. The non-chewable tastes NASTY, but I know it works because it quickly numbs your mouth - the surface blood vessels under the tongue carry it quickly into the bloodstream.

I used this with my Mom one time after she deliberately ate pineapple upside down cake "because it looked so good" at her assisted living facility, and avoided a trip to the ER. Another time, after a bee sting, I used the trick and managed to avoid another Epi injection. Last year my Texas neighbor with a bee allergy got swarmed when he was mowing, we made him chew 2 Benadryl, I handed him an Epi Pen that he never had to use, and the ER doc complimented him and his wife on the excellent triage - he only needed one shot of epinephrine before they sent him home.

I love to avoid epinephrine when I can because it gives me a fierce headache.

REPLY
1 reply
jenlemon | @jenlemon | 1 day ago
In reply to @foodandme "All the immunologists and medical literature I've seen say there is a difference, and that only..." + (show)
@foodandme

All the immunologists and medical literature I've seen say there is a difference, and that only true allergy causes an immune response that can be corroborated by blood or skin prick tests. Whereas food intolerance is supposedly limited to a gastrointestinal response, but I wonder given my experience and the one @jenlemon describes if science just hasn't progressed enough to prove that food intolerance could very well involve the immune system, but without the anaphylaxis, wheezing, mouth swelling, hives, and other classical immunological symptoms. The advice I've been given is always to avoid the offending food or put up with the consequences, which are intolerable and disabling. And what can you do when you react to all or nearly all food? I also wonder if celiac disease, even on a gluten-free diet, could predispose someone to have systemic reactions to lots of other foods. I wish someone would do a research study.

Jump to this post

I think you're probably right on the science just not having progressed enough to pick up on the immune involvement. Most sources I read (it's been awhile since I was first investigating and obviously I'm not an expert), but most sources I read said that the immune system is NOT involved with non-celiac gluten sensitivity. But 1 or 2 recent studies DID show activation of the innate immune system. Different from the adaptive immune response of celiac and not as severe, but still the immune system.

REPLY
jenlemon | @jenlemon | 1 day ago
In reply to @foodandme "Jen, hallelujah, I finally found someone like me. I'm sorry you're going through this, and my..." + (show)
@foodandme

Jen, hallelujah, I finally found someone like me. I'm sorry you're going through this, and my case likely won't bring you comfort, except to know you are not alone.

My condition is more advanced. It's been a long struggle. I won't get into all the details in a public forum, but I was suspected celiac as a child, put on a gluten-free diet, and did okay up until adulthood, when I started reacting to other foods. First it was dairy. Then peanuts. Then soy. Then corn. Then eggs. And on it went, initially ticking off all of the most common offenders, but over the years progressing to all grains except white rice and now even fruits, vegetables, and some meats are off limits. I can now eat only a few foods, and I worry I will lose the ability to eat those too.

The symptoms I experience involve multiple systems -- gastrointestinal, neurological, and the skin reactions would suggest immunological, but food allergy testing has been negative. Like you, I get the pain in my wrists, which over the years, has progressed to affect other nerves throughout my body. The pain is crippling.

Believe me, I have tried to reintroduce food triggers, and every time, it goes badly: the reactions become more severe with repeat exposure.

I've seen a lot of doctors. One gastro thinks it has to do with the gut-brain axis and possibly an underlying neurological cause.

If you want to stay in touch, maybe we could email. It helps to have support from someone who understands and compare notes.

Jump to this post

Yes, that is kind of disheartening to hear! Thanks for sharing, and I'm sorry you've had to deal with all that! I haven't yet figured out the messaging feature here, but I'd like to exchange emails/stay in touch.

REPLY
standinginfaith | @standinginfaith | 6 hours ago
In reply to @sueinmn "Chewing ANY Benadryl does the same. The non-chewable tastes NASTY, but I know it works because..." + (show)
@sueinmn

Chewing ANY Benadryl does the same. The non-chewable tastes NASTY, but I know it works because it quickly numbs your mouth - the surface blood vessels under the tongue carry it quickly into the bloodstream.

I used this with my Mom one time after she deliberately ate pineapple upside down cake "because it looked so good" at her assisted living facility, and avoided a trip to the ER. Another time, after a bee sting, I used the trick and managed to avoid another Epi injection. Last year my Texas neighbor with a bee allergy got swarmed when he was mowing, we made him chew 2 Benadryl, I handed him an Epi Pen that he never had to use, and the ER doc complimented him and his wife on the excellent triage - he only needed one shot of epinephrine before they sent him home.

I love to avoid epinephrine when I can because it gives me a fierce headache.

Jump to this post

Thank you!!! This is such great information!!! It's a revelation for sure!! Blessed!! and grateful!! God bless you !! and thank you!! Prayers for your wellness!!

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