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What is the difference between food allergy and food sensitivity?
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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I am allergic to mesquite pollen, which is abundant here. My best helps are a mask (just the cheap kind) on windy days, a HEPA air filter in the house and keeping it closed during heavy pollen season, which is about 6 weeks, and an antihistamine.
I take it more seriously than some because I have lung conditions that are aggravated when my body releases a lot of histamine. My brother has actually been hospitalized due to severe reactions to some pollens.
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2 ReactionsWhile we are mentioning unusual allergies, I am allergic to the generic form of my blood pressure med. When I take a brand version my BP is well controlled. When I take the generic version my BP has gone as high as 260/145. It has happened twice, been in cardiac care twice. My allergist says it is clearly the compounding agent(s) used since the drug is the same in both . Many doctors notice the conundrum of the drug being list as an allergy in MyChart and yet my drug lists the drug.
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3 ReactionsI have some food allergies but not anaphylactic ones, fortunately. I just try to minimize my exposure to them and am pretty good. My allergies are to crustaceans and scallops, plus MSG and sulfites. I can eat small quantities and sone cross contaminated food but may get done itching and hives.
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1 ReactionJen, 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.
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4 ReactionsI am not the only one!! And I am so sorry to hear that anyone is struggling with this.. I developed asthma at 19 (allergic to cats..and dogs) and now later in life (I'm 71) I had a sever allergic reaction to Pennicyllin in 2000 and was hiving all over and she said "inside hives too".. and on steroids for 2 years..suddenly I developed something with cinnamon.. in 2019.. face broke out all around nose chin.. dermatologist said it was and allergic reaction..ok..no more cinnamon. Then in Dec 2019 I took Levaquin 500 mg (usually took 250 mg) and it blew a hemorrhage in my stomach..got that healed.. but..it just seems to have snowballed into a mess.. a month after I had my gallbladder out I started the LEAP program after an MRT test ($500 not covered by insurance) ..did that Phases 1-5 and then found out there was a PHASE SIX which lasted several months.. I quit..(I was severely constipated and frustrated and down to 98 lbs) ..so waiting to get off PPIs.. you have to be off a week before allergist can skin test you.. on allergist told me that blood work is the best way to test and I've had some done.. but how much blood.. here's my most recent example of ..you have to be careful of "HIDDEN INGREDIENTS".. doctor said take B12 shots.. ok.. she gave me one.. I gave myself one and the 3rd day my entire digestive system was in a giant "charlie hores".. they have cobalt in them and I'm sensitive to metal..so all this to say.. you are not alone.. and you are being prayed for !!! I know what it feels like to just wonder ..what happens if I eat this..??? My family and friends don't understand.. but then they don't get deathly ill eating...God wants us well!! Prayers for you all!!
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2 ReactionsThanks for sharing. What is the LEAP program? Were you diagnosed with true allergy or food intolerance?
I tried to talk with my lung doctor at National Jewish about the difference between a food allergy and food intolerance and he didn’t believe there is a difference. They are supposed to be renown in treating allergies, including food allergies. You may wish to reach out to them to see if they have any suggestions. It sounds pretty grim to have to keep reducing foods you can eat.
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2 ReactionsAll 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.
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1 ReactionThe LEAP program is where you take away almost everything the first week and gradually add the things your MRT shows intolerance to for 6 Phases.. I do have some true allergies and alot of food intolerances...I did it in 2022..needing to go to allergist but have to be off PPIs for 7 days to do skin tests.. I had some done with blood work (IgE I think it's called) I know if it's an allergy.. if my throat starts to swell shut...then uh oh...time to pray fervently!!
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.
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