Heartburn for no reason. Feeling hopeless and miserable.

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HealthFreak
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Date Joined Jan 2012
Total Posts : 5
   Posted 1/6/2012 6:25 PM (GMT -6)   
All I ate today was buckwheat, rice thins, a few quinoa cookies and applesauce and yet I still have heartburn. I've been on so many elimination diets and am currently on one (vegan, soy free, gluten free) and still no relief. I'm only 16 years old. I've been to the gastrointerologist, allergist and doctor. They found out I had GERD and eosinophilic/allergic esophagitis. The allergy tests weren't positive for any foods which was very strange. I feel hopeless as so many foods have been giving me problems. Something as simple as rice gives me heartburn. I fear that one day I won't be able to eat anything and I really can't afford losing any more weight. Everyone says I'm really skinny and it's getting on my nerves. I'm also constantly worrying about the possibility of getting esophageal cancer considering the amount of times I get heartburn. I can't even eat properly or hang out with friends at a food court. I burp so many times a day that its really affecting my life and embarrassing me. I've tried probiotics, enzymes, antacids, ppi's (prevacid) which just made things worse. My diet is already so restricted and it's still giving me problems. I have my next endoscopy in about a month and I'm scared out of my mind. Sorry about the long rant, I just feel completely depressed and hopeless. Any suggestions for what I shall do next would be greatly appreciated. I just needed to get my frustration

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 1/6/2012 6:49 PM (GMT -6)   
Hey HealthFreak,

Welcome to HealingWell.com. I hope we can give you lots of useful advice here.

Firstly, I am terribly sorry that you've been suffering, and at such a young age!

The only thing I can suggest is to try another PPI. Have you only been on one before?

It sounds like you're on the right track in getting a scope done. Have you also tried not laying down for 3-5 hours after eating, and raising the head of your bed 6"-8"? It can allow you to get some sleep which may help alleviate the stress factor of this disease. You've made every dietary modification that I can think of.

At this point, I'm sure our very wise member Bruce will speak more about EoE, as I believe he has it and is very knowledgeable about this subject.

I am sorry for your suffering. Please know that this is a place of solace and advice. Please keep us posted on your progress.

Don't be scared of the scope; if need be, you can ask to be sedated, which a lot of our members say makes the process much easier. I did mine awake with an analgesic throat spray, and besides the gagging, it was fine.

Hang in there,
Ashley

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/6/2012 7:45 PM (GMT -6)   
Hi HealthFreak --

Sorry to hear about your troubles! You have a lot on your mind at 16 years old, when you should be enjoying high school and focusing on studies. Hopefully your doctor(s) can get you more comfortable.

If you don't mind me asking, what are your eosinophil counts? Did they evaluate them from three positions: upper, mid, and lower? That will help zero in on a possible course of treatment. Eosinophilic esophagitis isn't clearly understood at this point, but it's thought that there are two possible triggers -- either food allergy or reflux. In my case, it's the reflux which causes a moderate, but persistent EoE that I control with a Pulmicort inhaler that I swallow instead of inhale, twice a week.

EoE can cause you to feel pretty lousy all on its own, and you may not be able to tell the difference between heartburn and EoE...although you very well may have both. EoE can cause you to be feverish, lose appetite, and depressed -- although the depression is physiological because your body is essentially attacking itself. If you understand this, it may help you gain control of your anxieties a bit. You're most likely not experiencing depression necessarily because of emotional issues, although I fully understand how all this can get you down, too. Hopefully your doctor can prescribe a good treatment for this at the same time you're trying to manage the reflux. It's entirely possible that the EoE is more of an issue than reflux, and once you get it managed, life will look a whole lot better! Mild to moderate cases of EoE actually respond very quickly to corticosteroids.

I'd like to suggest one more thing, and I hope you won't take this in a way I didn't intend. You apparently have a lot of pressures on your shoulders, and the fact that you have joined our messageboard tells me you're searching for folks to listen to you, and offer help. I think it would be very helpful for you to also speak with a psychologist -- not because I think you have serious mental problems -- but because I think it would be extremely beneficial to have a "professional listener" close by, who you can sit down with and chat, and they can speak with you in real-time. Some of your difficulties may be due to your anxiety, and you have a right to feel anxious when you have all your unanswered questions! But a psychologist could help you sort through all this in a logical, linear fashion, and outline a "plan" for you that also includes making time for friends, and all the things you SHOULD be doing as a teenager...instead of focusing on everything that seems to be "wrong". Talk to your parents about this, and I'm sure they would support this on top of your visits to the GI.

Believe me, I know all too well how life can feel hopeless. But please direct your thoughts in another direction. There is always hope!! :)

Be sure to check back here with us, because we care too! Best wishes!

-Bruce

HealthFreak
New Member


Date Joined Jan 2012
Total Posts : 5
   Posted 1/6/2012 11:41 PM (GMT -6)   
Hi Bruce,
 
My eosinophil count in both my upper and mid esophagus was 0/hpf while my lower esophagus presented 50/hpf. I was diagnosed with mild esophagitis and eosinophilic esophagitis in my lower esophagus only. Although I used to have moderate esophagitis caused by acid reflux a few years ago, that resolved as a result of taking prevacid. The strange thing is, I didn't have a high eosinophil count in any areas of my esophagus at that time. My GI stated that my case was really odd considering most people with EoE have a high eosinophil count in the upper, mid and lower esophagus. The endoscopy identified the beginning of what was called furrows in my lower esophagus.
 
I stopped taking antacids and ppi's because of the side effects I experienced. Natural remedies and holistic treatments both of which I tried didn't seem to show much improvement of my symptoms. And I still can't identify the trigger/cause to my heartburn and reflux problems. I avoid eating cheese and sour fruit because it would leave me with a sensation I'd describe as fullness in my esophagus. I may consider taking corticosteriods if further allergy testing and blood work show nothing.
 
I appreciate your concern for the depression I mentioned in the previous post. I used to see a psychologist a few years ago for anxiety problems and phobia's but have stopped due to the pressure of forcing medication upon me when I refused. My family is very supportive and trying their best to help me through my difficulties with this.
 
Thank you for the advice. It was really helpful and informative.
 
 
 

Post Edited (HealthFreak) : 1/6/2012 10:06:53 PM (GMT-7)


bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/7/2012 12:40 AM (GMT -6)   
Hi again --

The fact that you're gathering a pretty cohesive history with your symptoms and treatments is good! Make sure your doctor is following all of this. I think it's significant that your eosinophils seem to be concentrated in the lower region of your esophagus. I also had the "rings" when the EoE was first diagnosed, although, in my case, the counts were fairly evenly distributed from top to bottom, and no higher than 14 per HPF. Now the rings are gone, and it's managed with the swallowed inhaler I mentioned.

It's possible that the "fullness" you described in your esophagus is simply a mucosal response to certain foods, and not necessarily a symptom of either the EoE or reflux. I used to try to eat those big pretzels when I was younger, with mustard, and it would cause a strange stricture of my esophagus that would result in me choking and gagging. It wasn't because I was nauseated, because I loved eating them! (Or trying, anyway!) Something in that combination would cause the response, but it was long before I had anything resembling EoE or reflux.

I'm really surprised about the rice causing heartburn, as rice is one of our "good" foods. You know yourself, of course, and how you feel. I wonder if it's possible that the rice is difficult to swallow because of the EoE, and tends to clump a little at the LES? Is it all rice, or just certain types that may have more starch in them? Sometimes foods will do that to me. I am vegetarian, too, although not because of health reasons. I include dairy/eggs in my diet.

It's also good to maintain a little skepticism about medication, sometimes, and ask questions like "...what's all this for?" Trying to manage your life being heavily medicated is not a good solution, either. I'm relieved to hear that your family is so supportive! So important!

I can't take PPIs because they all cause massive headaches, so I understand where you're coming from about the side effects. I had the TIF procedure in August, but it was unsuccessful in stopping all the reflux...so I'm still trying to manage the LPR symptoms. I don't eat past 3pm, go to bed at 12-1am, sleep on an incline, and chew two Gaviscon tablets before bed. It's not a perfect solution, to be sure, but it's all part of the "drill"! ;-)

I was a professional singer before the symptoms took my voice away, and was working on my first CD. I still stay up late each night, working on the mixes of my songs, expecting that someday I'll be able to add my vocal tracks. Maybe it sounds silly, but that's how I keep the hope going -- even though it's been well over a year since I could sing...

What do you love to do? What motivates you, or makes you really happy? Focus on that when you're feeling down, and cast your troubles aside for awhile. In just the few words you've written here, I can see how well-spoken and introspective you are. There's a lot of good going on inside that head of yours!

Keep the faith!

-Bruce

Post Edited (bcfromfl) : 1/6/2012 10:51:48 PM (GMT-7)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 1/7/2012 5:05 AM (GMT -6)   
Hi there HealthFreak

I have GERD and I have food allergies - I'm told in my case there's no relationship between the two. I do have long experience on the allergy front though, and for a while worked as a nutritional therapist (alternative medicine). Your post made me wonder about the rice - it's not at all common, but not impossible to be allergic to rice. The strictest or "top tier" (hardest to do exclusion diets) exclude rice in the initial stages - using millet instead. Food allergies aren't always easy to diagnose and the medical profession tends to have very little interest unless you swell up and go blue (I find........).

http://www.medscape.com/viewarticle/536496_4
This article mentions rice as one of the foods people reacted to in cases of eosinophilic oesophagitis.

So, I was just wondering, when you did your exclusion diet, did you exclude rice? If not, would you perhaps be able to do a short trial excluding it, using puffed millet and millet flakes instead (breakfasts). If you're OK with barley, you could try barley cous cous (pure barley not wheat) as an alternative to rice with main meals.

Hope you make some progress soon - do stick around and let us know how you're getting on.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

HealthFreak
New Member


Date Joined Jan 2012
Total Posts : 5
   Posted 1/8/2012 12:51 PM (GMT -6)   

Hi Bruce,

 

It can be really frustrating trying to find the reason behind a high eosinophil count in the lower esophagus. I feel that a particular allergen caused by food I ate on a regular basis would cause such an increase. I also believe that the area I experienced reflux in my esophagus, resulted in a concentration of eosinophils. Whenever I'd experience heartburn, I'd feel it at the bottom of my esophagus, near the diaphragm. Oddly enough, I never get regurgitation, a major symptom of acid reflux/GERD.

 

It's good to know your rings have disappeared. But something that's always been lingering on my mind is the possibility of the rings disappearing without corticosteroids. I would dislike having to rely on medication for the rest of my life, as other people with EE would too. My GI prescribed Flovent, but I still haven't had a trial with it; I'm resorting to all these diets and hoping for new methods of allergy testing that include delayed reactions (occurring to those with EE). I can relate to the difficulties you had eating pretzels in the past. I remember experiencing dysphagia long before I was diagnosed. Foods such as salmon and bread (both of which I excluded out of my diet) would always trigger inflammation in my esophagus. Esophageal obstruction as a result of eating salmon is what got me to the hospital where I began a new path of research and testing.  

 

I'm not certain that rice is the main cause of discomfort. I'm fine while eating it, but I'd always experience heartburn shortly after ingesting it. It would occur with any type of rice based foods. I eliminated corn for the same reason. 

 

 I've read about specific foods (such as lentils) and exercises that may strengthen the lower esophageal sphincter as most people with GERD have a weakened LES. I'm going to attempt this and see if there's any success. I avoid eating all oily/fried foods and have elevated my bed as well. I hope these changes improve symptoms.

 

It's interesting to know you were a professional singer. I enjoy singing and have been passionate about it since the age of 9. That seems like a great way to focus your mind on something other than health. Just reminded me, I need to work on improving my grades.

 

I really appreciate your advice.

 

Thank you

 
 
 
 
 

HealthFreak
New Member


Date Joined Jan 2012
Total Posts : 5
   Posted 1/8/2012 10:24 PM (GMT -6)   
Hi mudmagnetmom,
 
I'm not sure whether food allergies and GERD have any connections but they certainly cause similar symptoms. I'm told by some that GERD and food allergies are related while others have been telling me they're two completely different ailments. It's hard to distinguish between allergies and reflux in the case of EE.
 
Although rice is generally considered a safe food in my diet, I'm still going to eliminate it for atleast a week and see if there's a decrease  in the severity of my reflux symptoms. Eating pure cooked rice doesn't cause as much discomfort or heartburn as processed rice flour/puffs. I'll definitely try the millet flakes and see how that goes.
 
Thanks so much for the suggestions!

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/9/2012 12:06 AM (GMT -6)   
Best of luck trying to find your food allergy -- I understand that can be frustrating sometimes! I was even told by one GI doctor that he would prefer not to go down that road...just too difficult to pinpoint something (unless it's obvious like peanuts or kiwis, etc.).

Most people have GERD as a result of a mechanical/physiological malfunction, which doesn't seem to indicate any connection with food allergy. However, as you know there is a more likely connection between EoE and reflux.

IMO, I think there are at least two categories of GERD patients: those who have reflux as a result of a weakened LES, and those who reflux as a result of "misfired" signals (or lack thereof) from the vagus nerve, preventing the LES from contracting tightly. I think I probably fall in the latter category, as my tests have shown good structure in my LES and manometry was inconclusive. Also, since theoretically the TIF should correct reflux, but in my case I'm still experiencing LPR symptoms, this also seems to point to a vagus nerve connection in the upper esophageal muscles as well.

I've seen threads here from folks attempting to exercise the LES, but I'm not sure how successful those attempts are. Some involuntary systems, like the circulatory system, can respond to exercise...but I'm not sure about the digestive system. Good that you're avoiding oily/fried stuff, and raising the head of your bed. I HATE sleeping on an incline, but it does help some...

Everyone here on this messageboard hates the medications, and some, like me, are intolerant of many of them. I understand exactly how you feel about the possibility of taking them long-term.

Best wishes!

-Bruce

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 1/9/2012 3:31 PM (GMT -6)   
Good luck with the millet - keep a food and symptom diary for a couple of weeks to help you pinpoint any possible changes.

I asked to be tested or Eosinophilic Oesophagitis because of my known (pre-existing) food allergies but alas they only turned up reflux on the biopsies (and a very very small area of Barretts which the consultant dismissed as too small to get excited about......). My food allergies manifest as itching and eczema and the GERD is more of a late comer as far as my problems go - but that doesn't stop me wondering (like everyone) whether there's one culprit food I could just pinpoint and eliminate........ and then be fine....... ho hum....... wishful thinking.

Let us know how it goes.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

fresh09
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/19/2012 4:04 PM (GMT -6)   
I have just recently been diagnosed with eoe. My biopsies a month 4 months ago were about 84/hpf in my mid esophagus with only one biopsy done. I was put on a PPI for 6 weeks after some other testing and re biopsied a few weeks ago. I just received my results and my upper esophogus has 48/hpf, mid esophagus has 160/hpf, and my lower esophagus has 90/hpf. These seem really high to me.

We can't seem to find a food or inhaled allergen and I have had barium swallows for reflux that came back 100% negative. I'm frustrated and am not sure what to do. I have been put on an inhaled steroid, flovent, that I have been instructed to swallow two times a day. Then I have been asked to start a food elimination of one of the following six food groups; nuts, eggs, milk, seafood, wheat, or soy. I think I'll choose wheat to start.

I'm also meeting with a reumetologist next week because I've been having some joint issues and circulatory issues that could possibly be related. Oh, and I requested to have my blood tested for eosinophils too.

I can feel everything that I swallow both liquid and solid all the way down to the bottom of my breast bone. sometimes food gets stuck and sometimes it's just hard to swallow and uncomfortable. I'm just so scared to miss something and be mis diagnosed. Does anyone have any advice?

rohits453
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/5/2014 1:46 AM (GMT -6)   
Hi Healthfreak,

Please check this article. This may help you.

http://www.dontdieearly-book.com/gerd/

Regards,
Rohit

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/6/2014 2:37 AM (GMT -6)   
Rohit

Welcome to Healing well.

Unfortunately HF hasn't posted in a couple years. Please start a new thread and introduce yourself to the members.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
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