Recently I was diagnosed with a new disease called eosinophilic esophagitis.
As I was listening to the doctor telling me about how it is a relatively new disease that has been on the rise over the last decade, I thought, are you kidding me? Who gets a new disease?
Me.
I wanted to share my experience with eosinophilic esophagitis (EoE) as I never know who might land on this post and have some advice to offer.
I also wanted this to be a post to be a reminder of the importance of listening to your body. Our body will usually tell us if something is not right, which was the case with me and my “new” disease.
Periodically over the last year or so I would get the uncomfortable sensation of food getting stuck in my throat.
I chalked it up to eating too fast and would kick myself for causing the problem.
But over the past six months or so, the episodes with difficulty swallowing increased.
On a number of times, I would be so uncomfortable and scared I would choke, I would actually go to the bathroom and regurgitate the food to get rid of the sensation and bring immediate relief. Lovely, huh?
90% of the time when it happened it would be just be me alone with my little girls during the day and I was petrified I would choke or pass out in front of them with no adult to help.
Two times it even happened while I was driving. Terrifying.
I was embarrassed to tell anyone this was happening because I blamed myself. Finally one night, it happened at dinner and I mentioned it to my husband after a trip to the bathroom.
It was a good reality check when he told me, “That is not normal.” I knew it wasn’t, but I needed to hear it.
I think I was in denial because I didn’t want to face the fact something might be really wrong. Of course, in the back of my head I was scared I had some sort of tumor which was causing the blockage.
I was almost scared to go to a doctor to find out.
But then I looked at my two little girls and thought, no matter what the outcome, I need to get this checked out because my body is telling me something is not right.
Long story short, I was referred to a gastroenterologist who recommend an upper GI endoscopy, where they put you under and use a scope to see inside the upper GI tract.
During this time, they also take a number of small biopsies to test for abnormalities.
When I came to after the procedure, the doctor was telling me that to the naked eye everything looked healthy.
Thank God. Thank God. Thank God.
I was relieved, but at the same time, almost disappointed he didn’t see what could be causing this. Then I felt really STUPID for putting myself through the endoscopy if it was something as silly as eating too fast.
A week later he called and told me the results of the biopsies were in and I had a high number of eosinophils cells in my esophagus which was likely the cause of the swallowing problems. A term called dysphagia.
Eosinophilic esophagitis is an inflammatory condition where the wall of the esophagus becomes filled with these cells that are not supposed to be there.
The inflammation is thought to be an allergic response to a food allergy or allergies.
I have never had any allergies that I have known of, so I was shocked. Then I had a lightbulb moment thinking about my daughter’s food allergies. I guess the little apple doesn’t fall far from the tree?
I was referred to an allergist that put me through a first round of a skin prick test to test for immediate reactions to all the most common food allergens.
Nada. No reaction.
But those tests are not extremely accurate, so my next up is a skin patch test where they actually tape allergens on your body and leave it for 48 hours to test for delayed reactions. Therefore I will be walking around with an egg and other goodies taped to my back come July 8th. Good times.
If that comes back negative, I don’t know what I will do.
I was hoping something jumped out on the skin prick test so I could say, “OK! It’s dairy!” And then, no more dairy for me. But food allergies can be more elusive.
I hate the feeling I am consuming something regularly that is harmful to my body.
Down the road, I can also try out elimination diets, etc. But I am a little overwhelmed and taking things one day at a time.
In the meantime, I am on a Flovent inhaler twice a day, where I do two puffs and swallow the medication instead of inhaling. The medication is supposed to kill the cells. I don’t like being on it, but I don’t like these angry cells being there more!
Again, if your body is telling you something, listen to it. I wish I had a long time ago.
If anyone would like to comment, I would certainly appreciate it more than you know.
Image source: Mayo Clinic.
Hi Jen,
My mom had something similar occur where dormant environmental allergies were activated because of more concentrated exposure (they moved to a golf course community).
But because she ignored it for so long the environmental allergens started to attach themselves to FOOD and she began to experience anaphylactic shock!
She did all the skin tests too, and eliminated nuts, eggs and diary while she was on a shot regime for the environmental allergens. As those shots increased and she became more immune she could integrate the nut, egg and dairy foods again.
All this to say, don’t let them stop just at food allergens! It could also be environmental.
Oh Jen, I am so sorry. Thank you for being so brave and sharing your story! What an excellent reminder to listen to your body.
Although this is much more minor, I’ll share a quick story about how important it is TO listen to your body. I had a “simple” sinus infection last November…took my Amoxicillian…and it didn’t go away. Went back to the doctor three weeks later and went on another round of “stronger” antibiotics. Did all the “home remedies” as well. Didn’t help. My headaches were getting more intense…and I started to see stars and felt like my face was going to implode. I had to lay down for hours during the day with ice packs (which was SO convenient with a 2 and 5 year-old). During a drive through some hills, I almost passed out. I was terrified and so was my hubby.
So I decided to be proactive, skip yet another trip to my regular doc, and go straight to a specialist. I saw a fabulous ENT the next week, had a C-Scan, and finally got on the right combination of medicines (no surgery!). Within a week, the intensity stopped.
It’s already hard being a mama and juggling about a 1,000 things per day…and we always put our little ones first. But in order to be the best mom we can be to them, we need to be healthy ourselves.
Again, so proud of you Jen for sharing! And I’ll be sending positive vibes your way for your July 8th test!
Can’t wait to see how the next allergy testing goes! I really hope you find “the” thing!!!
What an intense process- I’m so sorry you’ve been experiencing all of this!
Thank goodness, it’s been pinpointed and, actually it’s probably fitting that YOU get a “new” disease as you have the ability to share the word about it to help identify it in themselves.
Thank you for spreading the info and looking forward to some answers soon!
XO
Hi Jen….your story is so interesting….my husband was diagnosed with the same thing about 4 years ago! We’ve always felt that his diagnoses was a little strange (and maybe a little far fetched) because he never suffered any major allergies in the past. He went through the same avenues you did….referred to a gastroenterologist….did the upper GI….got the call to come back for a follow up. He was also told it was due to allergies and the lining in his throat. His doctor didn’t refer him to an allergist though, but prescribed Priolsec, which is suppose to help the throat with the swallowing process. My husband took it for about a year and saw only a little improvement. So, not wanting to be on medicine anymore and since he only saw a little change, he stopped taking it. He found that eating slowly with lots of water works the same as the Prilosec. He says he can feel it coming on, will stop, take a break and then goes back to eating. Thanks for sharing your story! Maybe this is more common that we thought!!
Prilosec doesn’t help with the swallowing process… it’s a PPI which blocks acid from producing in the stomach.. which in turn helps to prevent inflammation in the esophagus and can help symptoms.
Sara, thank you so much for the advice. I would have never thought about environmental allergies, so I am glad I will have that in my back pocket to make sure to ask about.
Christy, thank you so much for sharing your story. It’s true, we have to really listen to our bodies and advocate for ourselves when something is wrong.
Dana, I am glad to hear I am not alone! In fact, this condition happens way more often in men, which makes it even weirder for me. I know sometimes they prescribe reflux meds, which haven’t been given to me because I did a test to see if I had acid reflux, which can also cause this. Thanks so much for sharing your experience, helps a lot!
I have really really bad food allergies. I get horrendous hives and have extreme GI issues (depending on which offender I’ve eaten). I guess my allergies have been building over time because it didn’t become a glaring issues until my early 30’s. but looking back I can see minor issues I’ve had all my life could be traced to certain foods.
I had gotten to many Dermatologists and they all said it was adult acne or eczema. Not one mentioned food allergies. It was the allergist I finally found who solved my mystery and my skin has been amazing since. But it was my persistence that got me to him in the first place!
Benadryl helps calm allergic reactions (children’s chewable works fast & is easy). I take Allegra every single day to mute my reaction to things I can’t control. Throat tightening would be plausible if you are eating something that your body doesn’t tolerate well. I met a woman the other day who said she has issues with only non organic apples – she can eat organic ones just fine- so we talked about how she thinks she reacts to the pesticides used on non organic. She too has throat issues with it.
Best advice? Try to keep a journal to see if there is a pattern of what you might be eating that might contain an offender. I’m allergic to oats & legumes and they are hidden in everything!
Hang in there and follow your intuition – not your fears 🙂
I’m so sorry you are going through this. Thank you for sharing such an important message about listening to your instincts when something doesn’t seem right. Good luck and hope your allergy test gives you more answers.
Thanks Katie and Jill, For your advice and support!!
xoxo
If your next round of allergy tests still comes up with nothing, you may consider trying an IGG allergy test (rather than the IGE allergy test you are undergoing with your doctor). Typically these are done with a naturopathic doctor. They will prick your finger to get a blood sample and then can test the blood against over 100 food and environmental components. The blood is measured for an antibody response on a scale of 1-5. It can detect low-level underlying, intolerances rather than a black and white response (which is what you’re undergoing with your doctor). Might as well give it a shot. I had it done and discovered I have some intolerance to dairy and yeast which a regular allergy test never showed.
Taylor- so amazingly helfpul, thank you so much!
Christine & Aimee – thanks so much for your comments and your support! xo
jen… i’m sorry you are dealing with this. great post about listening to your body. so important! sounds like you are taking all the right steps to find out everything that’s going on… hope you get the answers you need at the next round of testing! xox
Jen – I meant to comment when I first saw the post, but I’m just getting around to it now. My Dad had something very similar, and it was really scary while it was happening. It’s so interesting to hear what tests you’ve done and how you’re navigating your way through it. Thank you for sharing, I guarantee you’ve helped a lot of people by doing so. xo!
Dysphagia is common with cancer patients who have received radiation treatments. http://www.uwhealth.org/referring-physician-news/studying-radiation-associated-dysphagia-in-head-and-neck-cancer-patients-/13213
The fact that this disease has cropped up over the past 10 years when cell phone use has increased makes me wonder if excessive exposure to the non-ionizing radiation from the phones could be causing the same thing.
Caroline – now that is really frightening!
Hi…I saw this post on a friends fb page. I have had this for yrs as had my dad. I have had horrible nasal/skin allergies since birth…those switched for the cough. Basically I take zyrtec and an asthma inhaler each day. I also eliminated all fake creamers …those with vanilla or flavors. I stick to pure products…baked goods from ralphs kills me..fresh and easy,organic products I do well with. No coughing. If I use pure whipping cream in coffee I am fine. I also watch the nuts…melons, citrus and a few other items that trigger. Kale, green leafy vegies are the best for me….no coughing when I eat those. Cornmeal/rice can also trigger. Iam pretty sure its a food additive or preservative that is in some our foods that pushes my body over the edge. My dad lived to be 81….you will survive and be just fine!
Hi Jen,
Ironic that I did a hashtag search for this on Twitter, and Boom – someone I knew popped up. My son’s allergist is 99% certain this is what he has, though he has not yet had his biopsy. He experienced his first dysphagia a few weeks ago and like another poster, has begun to eat slowly without a serious recurrence. I’m eager to hear how your path progresses; if you’d rather stay in touch privately you can reach me at info(at)carmelfoodtour(dot)com.
Hoping everything is going well for you and your beautiful family!
Hi Staci!
So good to hear from you! I am so sorry to hear that you have been going through a similar situation with your son.
As far as an update on me, I had a skin prick allergy test and a 48 hour patch test, which tested for 31 food allergies, and had NO reaction to anything.
I was so disappointed, because I wanted to find the cause of this.
I have been taking Flovent, 2 puffs, 2 times a day, which I swallow (not inhale), and that has helped tremendously.
I have been on it about 7 weeks now, and have had just one dysphagia episode, whereas, it used to happen to me at least 1 – 2 times a week.
For now, the allergist recommended just staying on the medication since it is working. I wish I had a better answer.
Now I am going to have to push to see if I can do more on my own to try to find out what is causing this.
Please give me an update on your son. You can email me at jennifer at tinyoranges.com if you prefer to do it privately.
Good luck!
Thank you SO much for posting this! My husband is over 30 years old and has had to have his throat dilated several times over the years-doctors claiming he ‘must’ have GERD or something… he has NO IDEA what acid reflux even is! He doesnt get indigestion! On a whim I finally asked our doc to do a blood test to find out about food allergens. He is ‘slightly’ allergic to THIRTY SIX different foods! Most of which were things he VERY normally consumes! Wow… 30 year old man just now understanding why this horrible stuff keeps happening! (also getting the highly embarrassing moments of food caught in his throat!) Now, he knows when to cut back on “allergen foods” and for the most part can listen to his body-its just getting everything to calm down once it does flare up that is the issue! Thank you again for your post! Hope you got that blood test!
Hi Thea! I am so glad your husband got the food allergies checked out. Is he also going to have a scope to check for the cells? The patch testing came back all negative for me, so frustrating! Right now I am on medication that is controlling my symptoms, but I hope I am able to get to the bottom of it in the new year. Thanks for your comment, best of luck to you both.
Good morning, I have been googling AA since this morning bc my husband just discovered he has it too. What a lesson, listening to your body …. for two years he would get food stuck … I hope you are better! I was curious if you got to the root of the problem. One thing I have been reading a lot is the connection between food additives and GI inflammation, probably you already know but stay away from carrageenan, differently from individual allergies that one is universally inflammatory and really bad for any of us. Good luck to you!
Good morning, I have been googling EE since this morning bc my husband just discovered he has it too. What a lesson, listening to your body …. for two years he would get food stuck … I hope you are better! I was curious if you got to the root of the problem. One thing I have been reading a lot is the connection between food additives and GI inflammation, probably you already know but stay away from carrageenan, differently from individual allergies that one is universally inflammatory and really bad for any of us. Good luck to you!
My daughter has just been diagnosed too, Her consultant has prescribed Montelukast and is going to review this later in the year. The allergy testing you had would not have shown any results as the eosinophils do not migrate to the skin but are purely in the oesophagus. She has had a blood test to look for food allergens but this has been rather inconclusive.
I am told that there is a gel which can be taken to treat the condiiton – the asthma treatments which are swallowed are really ineffective as they do not target the cells which are causing the problems.
What was really interesting is that while this is more prevalent in youngsters and men this condition has only been recognised for about 5 years! We were really lucky to find a consultant who not only knew to test for this during the gastroscopy but then referred us to an amazing gastroenterologist!.
Jen,
I am a single Dad and was diagnosed with the same disease about 2 months ago. This is a very nasty disease, but I place my faith in Christ Jesus and get up and go to work every day. Swallowing has become so labor intensive that I dread eating food and have lost 30 lbs so far. Weight loss is good, but just not this way. I am praying for you. Please, be praying for me.
I find it quite amazing the amount if people coming down with this disease out of the blue. I am switching to food from a Farmer’s Market. Look up small traces of arsenic in our food. You will find some good reading. God bless you.
Eric