Feeling of food getting stuck

[HayleighNoWhey]

This has been going in for a while now. My food mainly consist of very purée and or liquids I can do solids sometimes if it’s super moist and the right consistency. Whenever I try solids I can feel it sticking halfway in my chest it goes down if I drink a bunch of water. I saw my ENT who gave me 40mg of omeprazole and famotidine. He also did a Nasal endoscopy, didn’t see anything wrong. Still had issues so I saw my gastrointestinal doctor and he ordered a modified barium swallow. The speech pathologist watched me swallow saw no issues in the video, however she did notice that the thick pudding they had me swallow was stuck in my esophagus. Which I could feel, it felt like an uncomfortable lump in my chest. They had me drink some more barium and it went down. She cleared me and told me I could stick to my purée diet and if I chose to eat solid food to drink something afterwards and make sure the food is well moist. Cut ahead a week later I get an email from my GI saying everything looked normal.  
 

I also would like to note they wanted me to eat a saltine cracker to see if I was swallowing solids properly, I refused that part of the test. They didn’t have any gluten free alternatives. And I worry that might have been the key to figuring out what’s going on. 
 

I plan on making another appointment, as I’m tired of the stuck feeling in my chest. I’ve had them stretch out my esophagus some years ago.  but I had a bad reaction to that procedure. I’m hoping there’s an alternative. 
 

any of you guys have this problem where food won’t go down all the  way? It used to be a feeling in my throat but now it’s all in my chest. 

[trents]

@HayleighNoWhey, this sounds to me like some kind of neurological problem. May we ask your age? Please refresh our memories as to your experience with gluten and celiac disease or NCGS. How long do you estimate you were suffering from a gluten disorder before being diagnosed or before going gluten free and how long have you been gluten free?

[Wheatwacked]

1 hour ago, HayleighNoWhey said:

they wanted me to eat a saltine cracker to see if I was swallowing solids properly, I refused that part of the test.

Good Job!  While a tenent of medicine is to do no harm, the medical profession seems to have lost their way when it comes to wheat.  Any thing first to prove it is not gluten enteropathy; GFD only as a last resort.

In many cases it is not enough to avoid gluten.  After years of malabsorption vitamin and mineral deficiencies, most subclinical to western medicine needs to be corrected.

For example, read this article on Dysphagia by the Mayo Clinic.  More than ten possible causes listed, Celiac Disease and Non Celiac Gluten Sensitivity are not them.  Surprising, because the Mayo Clinic seems to be a leader in Celiac Disease. "When you come to Mayo Clinic to diagnose or manage your celiac disease, you'll work with experienced gastroenterologists and dietitians who specialize in the management and treatment of this digestive disorder."

Getting to trents assessment of possible neurological disorder, a difficiency of Thiamine, vitamin B1, seems highly probable.

     "Our findings suggest that thiamine deficiency should be suspected in patients with dysphagia of unknown cause, even in the absence of alcohol abuse."   Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review

42% of the western world has low vitamin D.  I have yet to read anywhere that in is not 100% in the unsupplemented Celiac Population.

[knitty kitty]

Yes, @HayleighNoWhey, 

I've had difficulty swallowing.  Food got stuck at different spots.  I had Gerd and was prescribed omeprazole and famotidine.  They didn't work.  If anything they made me feel worse.  I was deficient in Thiamine and Niacin and other vitamins and minerals that I was not able to absorb because of Celiac Disease.  

Our bodies need Thiamine B 1 and Niacin B 3 to make and secrete digestive enzymes and gastric acid.  Gerd is symptomatic of too little gastric acid and not enough digestive enzymes (hypochlorhydria).  Proton pump inhibitors  lower these further.  Proton pump inhibitors and famotidine also cause functional thiamine deficiency by blocking the utilization of thiamine.  

Barium binds irrevocably with Thiamine allowing this heavy metal to be removed from the body in feces, and depleting Thiamine further.

My doctors did not recognize my nutritional deficiency symptoms.  They scratched their heads, shrugged their shoulders and walked away.  I recognized nutritional deficiency symptoms I had learned about at university.  But, wait...Malnutrition only happens in starving third world countries, right?  Wrong.  It happens in malabsorption syndromes like Celiac Disease.  

I started taking Thiamine Hydrochloride and Benfotiamine.  I also took a B Complex, and magnesium.  Thiamine needs magnesium and the other B vitamins to work properly.  Vitamin D and the other vitamins and trace minerals were added in. 

The difference after correcting nutritional deficiencies has been amazing.  Our bodies can heal if we give them the nutritional building blocks needed to function properly.  We have to get vitamins and minerals from our diet or with supplementation while we are healing.  We're not deficient in pharmaceuticals.  We're deficient in vitamins and minerals.  

Do discuss the benefits of supplementing with vitamins and minerals while healing with your doctor and nutritionist.  Tests for deficiencies should be done before supplementing.  

Hope this helps.

References:

A difficult diagnosis to swallow

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3588575/

And...

Proton Pump Inhibitor Use and Iron Deficiency Anemia in Celiac Patients

https://pubmed.ncbi.nlm.nih.gov/37939696/

And...

A review of the long-term use of proton pump inhibitors and risk of celiac disease in the context of HLA-DQ2 and HLA-DQ8 genetic predisposition

https://pubmed.ncbi.nlm.nih.gov/37746961/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7666909/

And...

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

 

[trents]

11 hours ago, HayleighNoWhey said:

 I saw my ENT who gave me 40mg of omeprazole and famotidine.

Like knitty kitty, I am concerned about this as well. The ENT was probably trying to heal what he thought was a wound in your esophagus from acid reflux but taking proton pump inhibitors and/or acid blockers long term can cause other damage to the body because they dramatically raise gut pH which inhibits digestion of food and absorption of nutrients. Are you still taking these?

[Raquel2021]

13 hours ago, HayleighNoWhey said:

This has been going in for a while now. My food mainly consist of very purée and or liquids I can do solids sometimes if it’s super moist and the right consistency. Whenever I try solids I can feel it sticking halfway in my chest it goes down if I drink a bunch of water. I saw my ENT who gave me 40mg of omeprazole and famotidine. He also did a Nasal endoscopy, didn’t see anything wrong. Still had issues so I saw my gastrointestinal doctor and he ordered a modified barium swallow. The speech pathologist watched me swallow saw no issues in the video, however she did notice that the thick pudding they had me swallow was stuck in my esophagus. Which I could feel, it felt like an uncomfortable lump in my chest. They had me drink some more barium and it went down. She cleared me and told me I could stick to my purée diet and if I chose to eat solid food to drink something afterwards and make sure the food is well moist. Cut ahead a week later I get an email from my GI saying everything looked normal.  
 

I also would like to note they wanted me to eat a saltine cracker to see if I was swallowing solids properly, I refused that part of the test. They didn’t have any gluten free alternatives. And I worry that might have been the key to figuring out what’s going on. 
 

I plan on making another appointment, as I’m tired of the stuck feeling in my chest. I’ve had them stretch out my esophagus some years ago.  but I had a bad reaction to that procedure. I’m hoping there’s an alternative. 
 

any of you guys have this problem where food won’t go down all the  way? It used to be a feeling in my throat but now it’s all in my chest. 

Have they done an endoscopy? I know someone who had this issue and actually had esophageal cancer. I am sorry not trying to scare you but that is how the person was diagnosed. Another reason could be a swollen thyroid? 

[trents]

11 minutes ago, Raquel2021 said:

Have they done an endoscopy? I know someone who had this issue and actually had esophageal cancer. I am sorry not trying to scare you but that is how the person was diagnosed. Another reason could be a swollen thyroid? 

I note that OP has had a barium swallow done but she doesn't mention an endoscopy. That certainly would be a wise thing to have done.

[knitty kitty]

@trents,

@HayleighNoWhey has been diagnosed with Celiac Disease by endoscopy.  She mentioned it in a previous post.  

[Elizabeth M Blair]

I have been having trouble swallowing food ever since I had my endoscopy done.  At first I figured that it was from the endoscopy tube, but it might also have been the change of diet that came after it.  gluten-free breads seem particularly troublesome.  BUT it's getting better as time goes on and I did see a GI nutritionist and am taking all the vitamins mentioned in the above posts.  So vitamins may be the key if you have not been taking the right ones. I have only been on a gluten-free diet for about 4 months and the learning curve is steep. But my next step will be to attempt to make my own gluten-free bread - with no sugar and a lot more fiber. It is usually store bought gluten-free bread that stick in my throat and also further down as it travels.  I open you find the solution to this problem!  I can't imagine not being able to manage solid food.

[knitty kitty]

Hi, @Elizabeth M Blair,

How much Thiamine are you taking?  What form is it in?  Have you tried increasing your Thiamine dose and looking for improvement?

[Elizabeth M Blair]

Knitty Kitty,  Thanks for your comments.  I just checked the supplements recommended by my GI nutritionist:  She told me to stop taking my B-complex supplement, which has 100 mg of Thiamine.  Perhaps I should go back to taking it again and see if there's a difference?  I am also taking  Senior vitamins (I'm able to turn 76). It has 1.1 mg of Thiamine - probably not enough??

[knitty kitty]

Thiamine has beneficial health effects when taken in high doses.  It sort of "kick starts" the body's metabolism into functioning properly.  It's truly amazing, the difference.  Doses as low as 300 mg/day to as high as 2500 mg/day have been used to correct deficiencies and attenuate disease.  See which level works for you. 

Our bodies can have difficulty absorbing sufficient nutrients in Celiac and also as we age.  The B Complex vitamins are water soluble and easily excreted in urine.  

The best way to tell if the B Complex is helping is to take it and look for improvements.  Keep notes in your food journal.

Taking the B Complex every other day is an option.  Your nutritionist may be concerned about you getting too much of Pyridoxine B 6, which can cause peripheral neuropathy (tingling toes) if taken in extremely high doses.  Too little Pyridoxine causes peripheral neuropathy indistinguishable from having too much.  So if your toes don't tingle, it's all good.  

You could take a separate supplement of Thiamine in the form Benfotiamine or Allithiamine every day in addition to your senior vitamin.  

Thiamine Hydrochloride is a relatively cheap and widely available form.  

We don't want to take Thiamine Mononitrate because it's not easy for our bodies to utilize this form. 

Check your vitamins and see which forms of Thiamine are used in those.   

Hope this helps you decide!

Edited December 7, 2023 by knitty kitty
Typo correction

[Elizabeth M Blair]

Thank you.  I will do some research to learn bout the kinds of thamine you mention and get back to my GI nutritionist about whether I should add something. I appreciate your expertise. 

[Wheatwacked]

I think it would be more accurate to call these vitamin and minerals boosters; instead of supplements.  Supplement seems like we are supplementing our already adequate intake, while booster would mean we are adding the essential nutrients we should be getting in our food but don't absorb due to villi damage or simply can't get enough from our diets to satisfy our body's functional needs.  In the gluten world they are called "fortification".

For a clue to the imflammation, get a homecysteine blood test if you can.  If it is high, you may be low in Choline (eggs, liver, red meat) Folate, B12, or B6.

Quote

 

            Circulating Homocysteine Is An Inflammation Marker  And A Risk Factor of Life-Threatening Inflammatory Diseases  varying degrees of hyperhomocysteinemia are detectable in all inflammatory diseases. Hyperhomocysteinemia is also considered as a risk factor for inflammatory diseases including life-threatening cardiovascular disease, stroke, renal failure and cancer. It should be noted that hyperhomocysteinemia not only is produced from inflammation, but the oxidative stress generated from hyperhomocysteinemia will again promote inflammation

 

 

[Elizabeth M Blair]

5 hours ago, Wheatwacked said:

I think it would be more accurate to call these vitamin and minerals boosters; instead of supplements.  Supplement seems like we are supplementing our already adequate intake, while booster would mean we are adding the essential nutrients we should be getting in our food but don't absorb due to villi damage or simply can't get enough from our diets to satisfy our body's functional needs.  In the gluten world they are called "fortification".

For a clue to the imflammation, get a homecysteine blood test if you can.  If it is high, you may be low in Choline (eggs, liver, red meat) Folate, B12, or B6.

 

 

I like the word "booster."  sounds so positive.

[Reindeer1]

On 12/3/2023 at 11:27 PM, HayleighNoWhey said:

This has been going in for a while now. My food mainly consist of very purée and or liquids I can do solids sometimes if it’s super moist and the right consistency. Whenever I try solids I can feel it sticking halfway in my chest it goes down if I drink a bunch of water. I saw my ENT who gave me 40mg of omeprazole and famotidine. He also did a Nasal endoscopy, didn’t see anything wrong. Still had issues so I saw my gastrointestinal doctor and he ordered a modified barium swallow. The speech pathologist watched me swallow saw no issues in the video, however she did notice that the thick pudding they had me swallow was stuck in my esophagus. Which I could feel, it felt like an uncomfortable lump in my chest. They had me drink some more barium and it went down. She cleared me and told me I could stick to my purée diet and if I chose to eat solid food to drink something afterwards and make sure the food is well moist. Cut ahead a week later I get an email from my GI saying everything looked normal.  
 

I also would like to note they wanted me to eat a saltine cracker to see if I was swallowing solids properly, I refused that part of the test. They didn’t have any gluten free alternatives. And I worry that might have been the key to figuring out what’s going on. 
 

I plan on making another appointment, as I’m tired of the stuck feeling in my chest. I’ve had them stretch out my esophagus some years ago.  but I had a bad reaction to that procedure. I’m hoping there’s an alternative. 
 

any of you guys have this problem where food won’t go down all the  way? It used to be a feeling in my throat but now it’s all in my chest. 

 

[NanceK]

Hi HayleighNoWhey - My son had the same issues.  Food would cause him to choke and sometimes liquids as well.  The GI doctor thought it might be something called eosinophilic esophagitis.  The diagnosis, however, can only be confirmed with a biopsy of the lining of the esophagus during an upper endoscopy.  It is NOT seen with the naked eye during an endoscopy - the biopsy of the lining of the esophagus has to be done (you don’t feel that by the way).  The treatment is using an inhaler that asthmatics use, but instead of inhaling it you swallow the puff.  Now that it’s controlled, my son uses the inhaler every other month.  No problem eating or drinking anything anymore.  By the way, he is not celiac (no genetic test though, just blood panels), but I have celiac disease. Just wanted to pass this along.  Hope you feel better!

 

[knitty kitty]

People with Celiac Disease have a higher rate of Eosinophilic Esophagitis than those in the general population. 

Eosinophilic esophagitis associated with celiac disease in children

http://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

Changing the diet by cutting out sugar can help improve Eosinophilic Esophagitis.

http://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

[Beverage]

Before I was diagnosed with Celiac's, I had a lot of acid reflux, food getting stuck all the time, it was awful.

It reduced a lot after I was finally diagnosed and healed a bit, but some still persisted.  It seemed to be further up my esophagus as time went on, chronic dry cough and scratchy voice, asthma worsened.

I finally went back to my ENT, and he said it was  probably silent reflux. He just wanted to prescribe antacids, but I'd read so much about how important acid is to getting nutrients out of our food, especially vitamin D and Calcium, which as someone with Celiacs, I did not want anything that would inhibit absorption of vitamins.

I of course went to Dr. Internet Search and found tons of info that many things reduce our stomach acid...medications, aging, etc. and acid reflux and esophagus irritation is usually caused by NOT ENOUGH acid, the food will ferment and / or rot causing the flux and irritation to the lining of the esophagus and sphincters.

I got tremendous relief from following this:  https://drjockers.com/hiatal-hernia/.  The things that I noticed right away, and I still continue with, are: 

1. the warm water fix / thumping feet down in morning

2. elevating head of bed, only needed a few inches at head and the improvement was notable first night

3. sip of apple cider vinegar with a dash of water before any meals with protein, YES most people need MORE acid, not less

4. digestive enzymes with meals

5. DGL deglycyrrhizinated licorice, chew 1 or 2 after any meals giving me problems, this does not reduce stomach acid, it coats the lining (it can elevate BP a little for some if you take it a lot, but I now take 1 after dinner most nights and no problem, I used to have to take 2 or more)   https://www.amazon.com/gp/product/B001WUC406/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1

Also, I had gotten advice from @knitty kitty on thiamine, and had lots of improvement in asthma.  You may not have asthma, but it was something I had mildly for awhile, and it got a lot worse after I had Celiacs.  I take this one: https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

Best of luck, I feel your pain, but try a few things, make a log of what you are trying and keep track of any changes.

[Elizabeth M Blair]

Hi Beverage.  I added a vitamin 3 supplement (booster!) at Knitty Kitty's advice, which included thiamine and within two weeks the swallowing problem disappeared.  I still have some digestive problems but really like your suggestion about doing a food journal so I can track what I have eaten when I have digestive problem  (but that means I have to record the all the gluten-free dark chocolate I consume for snacks). 

I read somewhere that anti-acid tablets were off limits for Celiac patients - I don't remember the reason why -  so I gave the full bottle to a friend.  That's the fun part about all this, gifting away Glutenized food, which I keep discovering in my house.  Your post was most helpful. I was interested in the asthma connection as a friend of mine has contracted a bad case of the recently.  Good luck with that.