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I'm new here, so I'm not sure if I'm even posting this in the right forum, but here goes. It's been about 3 months and I am at my wit's end. Forgive me for being dramatic, but I don't wanna suffer alone anymore. My gluten intolerance emerged when I hit puberty, but it was never serious: just bloating, constipation, fatigue. However, along the years, I noticed some strange symptoms come about. The weirdest being a "globus" sensation, as if something was caught in my throat. After attempting to cough it up to no avail, I decided to ignore it, assuming it was simply mucus. Once again, I continued to eat gluten, not realizing the damage it was causing. Then slowly over the course of a couple more years, I noticed that food would take awhile to go down. I didn't think much of it, just that I had to drink a lot more water than usual. Fast forward to the present time, and now I can hardly swallow my own saliva. I went to the doctor, who said I had nothing more than a mere chest cold. So I took the medicine, and only got worse. I don't know how it happened, but I stumbled upon a forum post, about a woman whose dysphagia was linked to celiac disease. It all makes sense now. After a month of starvation, my swallowing returned to (somewhat) normal, and as you can imagine, I stuffed every food imaginable down my throat: pizza, bread, ramen, my favorite foods basically. And now I'm back to step one, and I've never felt more miserable. I've avoided gluten like the plague ever since, yet I still cannot swallow. I really hope that someone out there can relate to the toll that this is taking on my mental health. I've never been suicidal, but it just seems like each day, a new symptom arises for no utter reason, and I think that being dead would be so much easier. As of now, I haven't eaten gluten in weeks, yet I have the sensation of a walnut stuck in my throat, and I am scared to death to eat a morsel of mashed potato. I've been waking up every morning choking on my saliva. No one is taking me seriously. My mom just tells me to eat less dairy and gluten. But my throat literally feels like it's the size of a straw. That's not all either. Don't even get me started on the brain fog, the random rashes, my bones aching for no reason, falling asleep while eating, the list goes on. I've managed to eat some soup now, although it takes me an hour to eat half a cup. This, along with the stress of college is beating me to a pulp right now. I hate to complain so much, but I really just want someone to tell me that they know what I'm going through, because no one in my life can relate to me right now, or even have any sympathy. Please, tell me I'm not alone. 

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I have zero proof of anything at this point but I went to the doctors concerning the same kind of problems. I had an upper GI done with no conclusive results. Due to the fact that everything came back normal they recommended that I should look into allergy testing. I haven't done anything with allergy testing yet. I also seem to go in cycles with the swallowing being more difficult with my menstruation cycle, I haven't been able to pinpoint the exact time frame in worsens yet but it is typically at the mid month/cycle time frame.  

Every time I begin to eat I struggle to swallow, this includes all liquids as well. Now the difficulty is constant, where before it would seem to last a couple months at a time, then go away. I know its getting worse and that worries me. I also have a geographical tongue that is consistently worsening. I don't enjoy food anymore and I'm not really interested in eating. Food doesn't sound good anymore, I associate discomfort and pain with it.

I guess I just wanted you to know that you're not alone with these struggles.

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Welcome to the board. Have you had any celiac testing done? If not you should do so.  It sounds like you are living in a house with folks that still consume gluten. It can be hard to be gluten free under those circumstances but it can be done. do read the Newbie 101 thread at the top of the coping section and if you have been taking those precautions then you would need to challenge for up to 12 weeks for the blood work. 

Celiac has the capacity to affect the nervous system which is what caused my difficulty swallowing, walking and even talking.  I had to be very strict but I did heal. Have you seen a neurologist? If not it might be a good idea to rule out any other possible neuro issues and an MRI can often show lesions found with celiac when the antibodies have affected the brain.

I hope you get some relief soon. I know first hand how scarey it can be to feel like you are going to choke on every bite of food. Something that helped me was to cut everything in very tiny pieces. Don't know if that might be helpful for you.

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7 hours ago, Demetria77 said:

I'm new here, so I'm not sure if I'm even posting this in the right forum, but here goes. It's been about 3 months and I am at my wit's end. Forgive me for being dramatic, but I don't wanna suffer alone anymore. My gluten intolerance emerged when I hit puberty, but it was never serious: just bloating, constipation, fatigue. However, along the years, I noticed some strange symptoms come about. The weirdest being a "globus" sensation, as if something was caught in my throat. After attempting to cough it up to no avail, I decided to ignore it, assuming it was simply mucus. Once again, I continued to eat gluten, not realizing the damage it was causing. Then slowly over the course of a couple more years, I noticed that food would take awhile to go down. I didn't think much of it, just that I had to drink a lot more water than usual. Fast forward to the present time, and now I can hardly swallow my own saliva. I went to the doctor, who said I had nothing more than a mere chest cold. So I took the medicine, and only got worse. I don't know how it happened, but I stumbled upon a forum post, about a woman whose dysphagia was linked to celiac disease. It all makes sense now. After a month of starvation, my swallowing returned to (somewhat) normal, and as you can imagine, I stuffed every food imaginable down my throat: pizza, bread, ramen, my favorite foods basically. And now I'm back to step one, and I've never felt more miserable. I've avoided gluten like the plague ever since, yet I still cannot swallow. I really hope that someone out there can relate to the toll that this is taking on my mental health. I've never been suicidal, but it just seems like each day, a new symptom arises for no utter reason, and I think that being dead would be so much easier. As of now, I haven't eaten gluten in weeks, yet I have the sensation of a walnut stuck in my throat, and I am scared to death to eat a morsel of mashed potato. I've been waking up every morning choking on my saliva. No one is taking me seriously. My mom just tells me to eat less dairy and gluten. But my throat literally feels like it's the size of a straw. That's not all either. Don't even get me started on the brain fog, the random rashes, my bones aching for no reason, falling asleep while eating, the list goes on. I've managed to eat some soup now, although it takes me an hour to eat half a cup. This, along with the stress of college is beating me to a pulp right now. I hate to complain so much, but I really just want someone to tell me that they know what I'm going through, because no one in my life can relate to me right now, or even have any sympathy. Please, tell me I'm not alone. 

Sounds like doing a gluten challenge for the testing is going to be near impossible. If it has only been a few weeks since you got off you might still be able to go to the doctor and request a celiac blood test and see about getting a endoscope done and biopsy. The endoscope would also show anything wrong in your throat as they go down. http://www.cureceliacdisease.org/screening/

Now lets talk about helping those symptoms, now we do not know the root cause of your throat issues, I am wondering if a form of anyphalitc shock ot something? If so then you should see about getting allergy testing done pronto. Have you tried a antihistamine? I am not discounting celiac here it is a auto immune disease and with constant damage and attacks often leads to allergies and food intolerance...hell I became highly allergic to corn with other allergies to whey, and a few minor ones....recent had the throat swelling to a flavored beverage.
Constipation is normally associated with the magnesium difenicy caused by the damaged intestines with this disease. Natural Vitality calm can help with the constipation, muscle aches and bone issues. Start off with 1/4 tsp (1-2g) and up the dose by that much til the full dose is reached over a week or til you get loose stools then back it back down dosing to tolerance.
Brain Fog, can be caused by many issues but is normally a B-vitamin issue. You have to take a complex of them not just one b-vitamin. I use Liquid Health Stress & Energy and Neurological Support 1tbsp each 3 times a day. Vitamin D3 might be something else to look into and a few others. You should get your nutrient levels checked

Food wise blended smoothies and shakes might be your thing for now and bone broth made with simmered veggies into to to infuse the broth with the vitamins and minerals from the veggies, this way you can get them without as much hassle. I would suggested a blended soup but you might just have to do the broth for awhile til you can have more solid foods....a nice blended coconut curry soup, potato cream soup with coconut milk instead of dairy, etc. should good and hearty. When you can have more solid like foods moving on to rice gruel/congee might be a good idea you can do it sweet with sugar/maple/honey and nut butters fruit, or savory with a broth base and veggies in it. Make it extra smooth blending it.

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Welcome Demetria77 :) and

9 hours ago, Demetria77 said:

 I hate to complain so much, but I really just want someone to tell me that they know what I'm going through, because no one in my life can relate to me right now, or even have any sympathy. Please, tell me I'm not alone. 

no you're not alone! There are people here who have gone through similar experiences and came through the other side stronger, healthier and happier. Things may seem bleak now but that doesn't mean they won't soon improve, that's what life is like sometimes. 

I was a little unclear about what happened to you here:

2 hours ago, Ennis_TX said:

. After a month of starvation, my swallowing returned to (somewhat) normal, and as you can imagine, I stuffed every food imaginable down my throat: pizza, bread, ramen, my favorite foods basically. And now I'm back to step one, and I've never felt more miserable.

Was this month of starvation you following a gluten free diet? If so and you then returned to eating a lot of gluten foods that could explain why you got much worse. It could also explain why you feel so miserable as gluten may be impacting your mental state as well. 

I know you've had bad experiences with doctors but I think you should consider trying again to get a diagnosis as it could prove very helpful for you. Maybe asking or searching your area for a doctor that specialises in celiac? If you find a doctor that's willing to test you and help you through the gluten challenge period that may make it easier to endure. 

However I'll just add, if now is not a good time to pursue a diagnosis via a gluten challenge, you can still take some steps to get an answer. Try to start a food journal, note what you eat, the time and how you're feeling. Note any symptoms such as brain fog, throat sore, digestive stuff etc. You can use  a note app on your phone or a little notepad whichever you prefer. This will help you track any reactions to foods and it also helps make you think a bit about what you're eating.

Second, you need to look after your mind as well as your body. Dealing with these kind of conditions is very stressful. Is there a counselling service at the college that you could book an appointment with?  It could prove really helpful to speak to someone outside your immediate circle, whether its to vent or just chat! It really helped me when I did this aside from any of the tests etc. You will also find lots of good advice and good people here, so do stay in touch here also ;)

Best of luck

Matt

 

 

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5 hours ago, kstadelman said:

I have zero proof of anything at this point but I went to the doctors concerning the same kind of problems. I had an upper GI done with no conclusive results. Due to the fact that everything came back normal they recommended that I should look into allergy testing. I haven't done anything with allergy testing yet. I also seem to go in cycles with the swallowing being more difficult with my menstruation cycle, I haven't been able to pinpoint the exact time frame in worsens yet but it is typically at the mid month/cycle time frame.  

Every time I begin to eat I struggle to swallow, this includes all liquids as well. Now the difficulty is constant, where before it would seem to last a couple months at a time, then go away. I know its getting worse and that worries me. I also have a geographical tongue that is consistently worsening. I don't enjoy food anymore and I'm not really interested in eating. Food doesn't sound good anymore, I associate discomfort and pain with it.

I guess I just wanted you to know that you're not alone with these struggles.

Welcome :) 

Consider starting a new thread as more people will see your post and may be able to offer some help. 

Best,

Matt

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11 hours ago, Demetria77 said:

I'm new here, so I'm not sure if I'm even posting this in the right forum, but here goes. It's been about 3 months and I am at my wit's end. Forgive me for being dramatic, but I don't wanna suffer alone anymore. My gluten intolerance emerged when I hit puberty, but it was never serious: just bloating, constipation, fatigue. However, along the years, I noticed some strange symptoms come about. The weirdest being a "globus" sensation, as if something was caught in my throat. After attempting to cough it up to no avail, I decided to ignore it, assuming it was simply mucus. Once again, I continued to eat gluten, not realizing the damage it was causing. Then slowly over the course of a couple more years, I noticed that food would take awhile to go down. I didn't think much of it, just that I had to drink a lot more water than usual. Fast forward to the present time, and now I can hardly swallow my own saliva. I went to the doctor, who said I had nothing more than a mere chest cold. So I took the medicine, and only got worse. I don't know how it happened, but I stumbled upon a forum post, about a woman whose dysphagia was linked to celiac disease. It all makes sense now. After a month of starvation, my swallowing returned to (somewhat) normal, and as you can imagine, I stuffed every food imaginable down my throat: pizza, bread, ramen, my favorite foods basically. And now I'm back to step one, and I've never felt more miserable. I've avoided gluten like the plague ever since, yet I still cannot swallow. I really hope that someone out there can relate to the toll that this is taking on my mental health. I've never been suicidal, but it just seems like each day, a new symptom arises for no utter reason, and I think that being dead would be so much easier. As of now, I haven't eaten gluten in weeks, yet I have the sensation of a walnut stuck in my throat, and I am scared to death to eat a morsel of mashed potato. I've been waking up every morning choking on my saliva. No one is taking me seriously. My mom just tells me to eat less dairy and gluten. But my throat literally feels like it's the size of a straw. That's not all either. Don't even get me started on the brain fog, the random rashes, my bones aching for no reason, falling asleep while eating, the list goes on. I've managed to eat some soup now, although it takes me an hour to eat half a cup. This, along with the stress of college is beating me to a pulp right now. I hate to complain so much, but I really just want someone to tell me that they know what I'm going through, because no one in my life can relate to me right now, or even have any sympathy. Please, tell me I'm not alone. 

Dysphagia (difficulty swallowing) is serious and you should be attended to as soon as you can. I would first rule out that it's not something mechanical. There are congenital conditions that can cause a narrowing of the esophagus. And Celiac can too (esophageal web). Then, if that's not it, I would second the recommendation to see a neurologist.

Additionally, speech pathologists may be able to help. I would be curious to know if, when you try to swallow a liquid, you regurgitate it these days? If so, go to the ER. Does it help to eat more pureed type food?
 

Plumbago

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I would also recommend a brain scan as the brain stem controls swallowing and it can get damaged. You can google the common foods that people are allergic to. I would try an elimination diet. 

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There are several types of “swallowing studies” that doctors can do.  In one you swallow a barium solution and they do imaging to actually see how things are working in your throat.  My husband had one done when he felt like he had a lump in his throat.

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20 hours ago, Demetria77 said:

I'm new here, so I'm not sure if I'm even posting this in the right forum, but here goes. It's been about 3 months and I am at my wit's end. Forgive me for being dramatic, but I don't wanna suffer alone anymore. My gluten intolerance emerged when I hit puberty, but it was never serious: just bloating, constipation, fatigue. However, along the years, I noticed some strange symptoms come about. The weirdest being a "globus" sensation, as if something was caught in my throat. After attempting to cough it up to no avail, I decided to ignore it, assuming it was simply mucus. Once again, I continued to eat gluten, not realizing the damage it was causing. Then slowly over the course of a couple more years, I noticed that food would take awhile to go down. I didn't think much of it, just that I had to drink a lot more water than usual. Fast forward to the present time, and now I can hardly swallow my own saliva. I went to the doctor, who said I had nothing more than a mere chest cold. So I took the medicine, and only got worse. I don't know how it happened, but I stumbled upon a forum post, about a woman whose dysphagia was linked to celiac disease. It all makes sense now. After a month of starvation, my swallowing returned to (somewhat) normal, and as you can imagine, I stuffed every food imaginable down my throat: pizza, bread, ramen, my favorite foods basically. And now I'm back to step one, and I've never felt more miserable. I've avoided gluten like the plague ever since, yet I still cannot swallow. I really hope that someone out there can relate to the toll that this is taking on my mental health. I've never been suicidal, but it just seems like each day, a new symptom arises for no utter reason, and I think that being dead would be so much easier. As of now, I haven't eaten gluten in weeks, yet I have the sensation of a walnut stuck in my throat, and I am scared to death to eat a morsel of mashed potato. I've been waking up every morning choking on my saliva. No one is taking me seriously. My mom just tells me to eat less dairy and gluten. But my throat literally feels like it's the size of a straw. That's not all either. Don't even get me started on the brain fog, the random rashes, my bones aching for no reason, falling asleep while eating, the list goes on. I've managed to eat some soup now, although it takes me an hour to eat half a cup. This, along with the stress of college is beating me to a pulp right now. I hate to complain so much, but I really just want someone to tell me that they know what I'm going through, because no one in my life can relate to me right now, or even have any sympathy. Please, tell me I'm not alone. 

You very likely have a different autoimmune condition called EOE and from what you wrote it would seem that wheat and nuts are a major trigger. Highly recommend you see an allergist and GI specialist experienced with EOE as soon as possible. They will likely start with an endoscopy, take several biopsies and meanwhile you will want to get tested for environmental allergies. Some have found that foods associated with OAS can trigger these symptoms. Good luck! 

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Sorry, you said it feels like the sensation of a walnut caught in your throat. I thought you indicated this sensation took place after eating a walnut. Either way, nuts, eggs, dairy, wheat and shellfish are very common triggers for EOE. But environmental allergies also play a big role. Worth looking into.

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1 hour ago, artistsl said:

Sorry, you said it feels like the sensation of a walnut caught in your throat. I thought you indicated this sensation took place after eating a walnut. Either way, nuts, eggs, dairy, wheat and shellfish are very common triggers for EOE. But environmental allergies also play a big role. Worth looking into.

Demetria77,

Artistl and Cyclinglady have given you good advise.

I had a friend with EOE and dysphagia was diffently a problem for them.

You might also want to have your iron levels checked.

IDA is common with EOE.

Here is the link to Celiac disease and dysphagia.

https://www.ncbi.nlm.nih.gov/pubmed/10022662

I also recommend this thread.

and this thread

see the response to LaFloyd Hobbs.

It turns out IDA is common in Celiac's especially if you don't have other GI symptom's.

see this new article about how a diagnosis can be delayed when only IDA is a common presenting symptom' without other GI problems.

they actually estimate almost 70% of those without GI symptom's had IDA.

quoting for reference.

"Nearly 70% of patients without gastrointestinal symptoms had anemia .. . ." and

and once you begin to realize there is a connection then it all begins to make sense.

see also this link entitled "Eosinophilic Gastroenteritis Presenting with Severe Anemia and Near Syncope"

http://jabfm.org/content/25/6/913.full

I must stop for now but this will get you on the right track.

good luck on your continued journey!

I hope this is helpful.

2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included

posterboy by the grace of God,

 

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I am your symptom twin and I have celiac and EOE.  EOE can be helped by swallowing an inhailed steroid.  Basically I had to use a steroid inhaler, hold the puff in my mouth, then swallow it instead of breathing it in.

Make a bunch of soup with clear broth and over cooked veggies and live on that for awhile.  Then look into AIP wellness.  I don’t have to follow every AIP rule but I am VERY gluten free.  I don’t eat much dairy and I am doing great!  Get lots of good nutrients into your body so you can recover.  Soup and kale or spinach smoothies are a great start.

 

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I can definitely relate! I was diagnosed with celiac disease in November after suffering from GI issues.  After I had been gluten-free for about 2 months I started experiencing that "lump in my throat" sensation. It did seem to be worse after eating or swallowing pills but generally, I felt it all of the time.  My doctor put me on PPI's thinking it was related to acid reflux.  After two months on the PPI's I saw absolutely no improvement so I took myself off of them.  Then I had a barium swallow test done which showed I was having difficulty swallowing but it was unclear why since my recent endoscopy that diagnosed my celiac showed nothing worrisome.  It has been over 3 months since that sensation started and for whatever reason, it is getting better, slowly.  There is something called globus hystericus which is basically a lump sensation brought on by anxiety.  Although I did not really feel anxious, I think the stress of the new diagnosis brought this on.  My doctor put me on Prozac and my lump feeling slowing started to fade and gets better every day.  I have read forums where some say their globus hystericus lasts up to 2 years and then suddenly one day it is gone.  Try to eliminate as much stress as you can and focus on taking care of yourself and healing.  I know how frustrating it is to be gluten-free and STILL have new symptoms crop up, but from my experience slowly but surely things get better. Hang in there!

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I was totally bored tonight and decided to stop by.

I went through my Daughter's Celiac diagnoses at 16 months old and her Eosinophilic Esophagitis (EOE) when she was 6 years old.  She is now 15.

My advice... Get to a gastro. doc. ASAP  Discuss what an endoscopy will be ruling out/diagnosing.  As EOE is suspect, the "trigger" may be an airborne allergen - which depends on the season during your testing if it can be diagnosed.  Make sure the doctor doing the scope is specifically testing for EOE as the lab samples must be screened for with red dye.  Adults are diagnosed by a higher count range than pediatric patients.

Difficulty swallowing in EOE patients is caused by narrowing of the esophagus, schatzi rings, grooves and furrows.  You are at a significant risk of actually getting food stuck in your throat because of this damage.  So no diet changes at this point and get to the doctor ASAP.  You can soothe your throat and boost some extra (empty) calories with Slurpees/icees from 7 11 or other convenience stores.

There are many Celiac patients that also have EOE or EOE patients that have determined gluten to be a "trigger" allergen here at the forum.  (You can find decades of experience to draw from to help you if you do have EOE or other "common" Celiac issues.

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I often have dysphasia as a result of acid reflux. The acid bolus feela like something is stuck in my throat but its usually air nd acid. usually when I have pain from ulcerative colitis, another celiac side effect. Have you been diagnosed with Gerd?

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On 3/14/2018 at 3:23 PM, Juliac said:

I often have dysphasia as a result of acid reflux. The acid bolus feela like something is stuck in my throat but its usually air nd acid. usually when I have pain from ulcerative colitis, another celiac side effect. Have you been diagnosed with Gerd?

@juliac  What you describe sounds very much like Eosinophilic colitis (EC) and Eosinophilic Esophagitis (EOE). It can only be diagnosed via biopsy. You may consider finding a GI doc who specializes in Eosinophilic gastrointestinal disorders, if you haven’t done so already. 

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