Painful And Difficult Swallowing

[mamabear]

I have had 5 weeks of difficulty swallowing. It is painful most of the time, and my thyroid is not the problem(TSH well replaced and not suppressed;thyroid usg with scars{thyroiditis} and no nodules). I had an EGD yesterday and am having even more trouble after the biopsies with throat and upper chest pain. I figure if it had been heart, I'd have been gone weeks ago!

At any rate, I was wondering if any one else has had trouble swallowing such that it feels like you have to remember to know HOW to swallow??? I sometimes have to nearly gulp to get things down. But at other times, it is just uncomfortable and may feel like the food is multiplying. My next up test is a barium swallow with a speech pathologist. ENT next.....nowhere else so far after that. On Protonix since the biopsy, and a 3 week double dose prior to that.

So has anyone else been there?? Any ideas? I am fresh out and so it seems are the LMD's. My DH thinks (half joking) that it's nerves!!!

[Mother of Jibril]

Unfortunately, I do have two ideas... Sjogren's syndrome can cause difficulty swallowing due to lack of saliva (dry mouth, dry throat). Myasthenia gravis can weaken the muscles around your esophagus. Both of these are autoimmune disorders, but Sjogren's is more common.

[mamabear]

Unfortunately, I do have two ideas... Sjogren's syndrome can cause difficulty swallowing due to lack of saliva (dry mouth, dry throat). Myasthenia gravis can weaken the muscles around your esophagus. Both of these are autoimmune disorders, but Sjogren's is more common.

Thought through both of these(great ideas BTW) and have plenty of salive, no dry eyes,no stiffening or waxiness of digits......no other muscle weakness but ought to do all the lab. Thanks for the push. I also thought of tertiary contractions of the esophagus with spasm;eosinophilic esophagitis;ALS ( no speech problem); but I get such oddball illnesses with all my autoimmune stuff, I figure once again I'll be outside the box. No easy answers here.

[codetalker]

I have had 5 weeks of difficulty swallowing. It is painful most of the time, ....

I

[flourgirl]

I've also had a great deal of trouble with a tight throat and difficulty in swallowing. I don't eat several foods anymore because it's just too hard to get down. I've complained to doctors for several years and I pretty much get brushed off. My current doc thought it was nerves because I'd been so desperately ill. I can't stand to have anything near my neck because it feels like I'm choking. Sometimes I think there is something up against my neck when nothing is there.

As I've been healing....I still have this problem, with increasing body aches. I'm sure it's another autoimmune disorder....like Sjogrens. I'll know more when I see the doc next. Not every symptom is going to be a problem...I'm sure it varies with each individual just like Celiac does.

Good luck finding answers Mamabear. Be sure to let us know, and I'll do the same.

[jerseyangel]

such that it feels like you have to remember to know HOW to swallow??? I sometimes have to nearly gulp to get things down. But at other times, it is just uncomfortable and may feel like the food is multiplying.

I had this exact thing before I was diagnosed. For me, it went away after being on the gluten-free diet for a while. I wonder, since you've been through all the medical possibilities, could it be another food intolerance? I also felt that having the feeling that I was about to choke set me up for tense muscles while eating in general. Just a thought.

[April in KC]

Eosinophilic esophagitis can cause dysphagia (difficulty swallowing) and frequently has multiple food triggers. It can be diagnosed through biopsy, but the lab must be looking for it specifically. They have to stain the eosinophils and count them under the microscope.

Try www.apfed.com for more info.

[SGWhiskers]

Swallowing problems are frequently caused by neurologic problems. You will get a wealth of information with the speech pathologist's barium swallow. A neurologist appt or consult might be appropriate as well.

Good luck.

SGWhiskers

[mamabear]

Thanks to everyone for your ideas and support. As an unusual aside, I think I'm allergic(real allergy) to Propofol ! I woke up with a fairly textbook drug allergic RASH ! I've never done that one before.......I usually listen to what my body is trying to tell me, and it says it's more than being anxious about all this, but after all this, I'm starting to get anxious!!! Catch 22 !!!

[Jaimepsalm63]

I have the same problem and it's getting worse.

I'm seeing my GI doc on Saturday and am going to talk to him more about it.

We already know the foods I have to stay away from, but when it gets to the point of having problems with something as simple as even distilled water.....um, yea.

I saw him a few months ago and told him about it. He threw out the possibility of scleroderma in the digestive tract and wants to see me now that it is getting worse. He said it's kind of rare, but with my family history and my personal history...he wouldn't be surprised.

He said it would fit with the gastroparesis I've been tested and confirmed dx for already and I don't have diabetes which is usually the case for gastroparesis.

Please keep everyone informed if you find out what's going on with you.

I think that would be wise for us all to say what we got tested for (the possibilities because they may all be different for everyone) and the results. That way it opens up possibilities for all of us. It's the support group we all need, because we all understand the pain.

[zeta-lilly]

My first thought is acute parotitis. Sjorgren's is the chronic version of that. You can have parotitis without the dry mouth and eyes. This would explain the pain and difficulty swallowing. I wouldn't think that a neurological problem would cause pain too, but I'm no expert. Have you tried to feel around your neck and throat are with your hand? If it hurts to press on it, it's probably swelling rather than neurological. Have they ruled out anything? Please let us know. Now I'm really curious.

[mamabear]

Hello everyone......first chance I've had to get a reply back. GI called today and the biopsies are all negative. The speech pathologist evaluation with barium/fluoroscopy was also reported as normal, although the speech pathologist said to me that there was a very slight delay with solid foods. GI says all normal, so now he wants me to come in and more formally evaluate all this. Said it wasn't necessary when I first called!! The allergic rash is almost faded now, and the painful swallowing is nearly resolved. Gone as mysteriously as it came. It lasted ~6 weeks .....I did take 4 days of methylprednisolone at very low doses(4 mg one or two a day)...they were leftover from a Dose Pack ....took them on Thanksgiving Day when it hurt so bad it felt like strep throat(strep test neg) and I guess that started the resolution. I think it was some type of autoimmune reaction, and am so frustrated with the elusiveness of this, I could scream! I am thinking of seeing if my insurance would cover another GI in a different city. I feel like I've lost confidence in the one who diagnosed me(random biopsies), and hope to figure out who else might have more celiac experience.......total body comprehension....we are SOME complex people!

[Jaimepsalm63]

For those trying to keep up with the subject of difficulty swallowing, I have some news on my end at least. Maybe this can help someone else.

I saw my awesome GI doc today and he is looking into Sjogren's syndrome. He said I have most of the symptoms of it. He is doing another EDG on the 23rd to make sure it's not an infection or problems with the throat to help confirm it.

He has suspected scleroderma for a while and said that people with Sjorgren's can have scleroderma as well.

He did say I had some of the markers for Lupus too, but the blood work is not supporting it at all and he's going to investigate it further with me.

He also said that some of my lymphnodes are inflamed and shouldn't be. That is another thing we're investigating.

It may not all be "good" news, but it's news and I'm not crazy! My GI doc always listens to me and ALL the symptoms not just the digestive ones. I encourage everyone to list everything and make sure the doctor listens.

[cmom]

You are very fortunate to have a doctor who listens to ALL your symptoms. I have had mine tell me, as well as the receptionist, that certain symptoms are not related to celiac and some other doctor would take care of them. Symptoms such as sinus problems, headaches, etc. It really ticks me off, but don't know of another good GI in the area.

[mamabear]

Well, another day without any trouble with swallowing. I am supposed to talk to the GI tomorrow, and decide on a day we can meet face to face and go over all of this. I really believe the steroids stopped it. Maybe Protonix helped,too, but no one really knows. I do not make antibodies very well. I have low IgA and another Ig, and have had neg celiac panels with Marsh IV pattern.I doubt the lab for Sjogren's would be positive as RA, FANA are negative as well as normal CRP's. My mother had RA late in life according to a rheumatologist in East TN area. I have my reasons to seriously doubt just about ANY doc in that area, so who knows if that was real. She had no physical evidence of RA. It took 3 different rounds of Hepatitis vaccine before I converted a Hep B AB years ago. Turns out that is common in celiacs. So, I may look to another medical center if this recurs. If the current GI has any words of wisdom, I'll post. At least my drug rash from Propofol has finally quit!!!!!!!

[GFinDC]

Good to hear things are going better! I had problems swallowing for a while too. In my case I think it was partly caused by gas in the stomach. I know that sounds simple compared to some of the other things described. But it definitely can cause problems swallowing and pain. I have a thyroid cyst also, but haven't had any problems swallowing past that area. It was always lower down nearer the stomach entrance. I have read that people with acid reflux sometimes have swallowing problems due to damage to the esophagus nerves/muscles, or thickening of the esophagus walls. Anyway, just passing on some things.

[mamabear]

Nothing new with my talk with the GI except he agreed I should see an ENT next. And I agreed I'd go in for a face to face talk and exam after the first of the year whether or not this comes back. We'll see.

So far still so good.

Hope everyone else with swallowing problems gets there,too.

[AliB]

Difficulty swallowing can also quite simply be due to Candida. Commonly the foods that are most likely to get 'stuck' are starchy carbs - potatoes, corn, soy, etc.

Candida can also contribute to a dry throat and eyes - I have systemic Candida and I have all of those problems, and more. I wonder if Sjogrens might not be down to Candida..............?

Check out the Specific Carbohydrate Diet. It helps the body heal and also helps it to get the beggars under control and encourages rebalance of the gut flora - gut dysbiosis is one of the singlemost contributors to ill-health.

Lack of good protective bacteria in the digestive tract allows pathogens to take 'root' and bleed us dry. They are down there - unbeknown to us - creating many background infections and inflammations - keeping us debilitated. Not only do we need good bacteria - we also need to change our diets to make the environment right for them to grow and the beasties to die!

The diet is gradually helping my body get the upper hand. I am also supporting my body and immune system with antibacterial and antifungal herbs plus vitamins and minerals. If I throw enough at it I will win in the end.

[mamabear]

Difficulty swallowing can also quite simply be due to Candida. Commonly the foods that are most likely to get 'stuck' are starchy carbs - potatoes, corn, soy, etc.

Candida can also contribute to a dry throat and eyes - I have systemic Candida and I have all of those problems, and more. I wonder if Sjogrens might not be down to Candida..............?

Check out the Specific Carbohydrate Diet. It helps the body heal and also helps it to get the beggars under control and encourages rebalance of the gut flora - gut dysbiosis is one of the singlemost contributors to ill-health.

Lack of good protective bacteria in the digestive tract allows pathogens to take 'root' and bleed us dry. They are down there - unbeknown to us - creating many background infections and inflammations - keeping us debilitated. Not only do we need good bacteria - we also need to change our diets to make the environment right for them to grow and the beasties to die!

The diet is gradually helping my body get the upper hand. I am also supporting my body and immune system with antibacterial and antifungal herbs plus vitamins and minerals. If I throw enough at it I will win in the end.

Good thought but they specifically looked for candida with the biosy and it wasn't there.