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Problems Swallowing?

kelly z

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kelly z Rookie
kelly z
Posted

Hi all and thank you for taking the time to read this. My husband was diagnosed with celiac disease in March 06. At first, he had been given meds for acid reflux. For a long time, he'd have problems swallowing. He'd take a bite of his dinner, then wash it down with milk (no dairy allergy) and have to run to the sink to "gurge" everything back up. Over 6 mos. of that (meds for acid reflux) and he wasn't any better. Went in for an EGD. Diagnosed with celiac disease. They gave him some type of inhaler to help the "rings" in his esophagus ( result, we were told, of the celiac disease) go away. 6 months of that inhaler...still problems swallowing. Go back in for another EGD. They open his esophagus a little (again) and tell him to try that and see an allergist. Allergist says tree nut allergy and possibly soy allergy. Ok...so tree nut are out. I have been buying less food stuffs with soy in it (his orders...not mine...otherwise he wouldn't eat any soy at all). However, he STILL can't swallow normally.

Has anyone been diagnosed with these "rings" in their esophagus and do you have any suggestions?

Thank you.

Kelly

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ravenwoodglass Mentor
ravenwoodglass
Posted
Hi all and thank you for taking the time to read this. My husband was diagnosed with celiac disease in March 06. At first, he had been given meds for acid reflux. For a long time, he'd have problems swallowing. He'd take a bite of his dinner, then wash it down with milk (no dairy allergy) and have to run to the sink to "gurge" everything back up. Over 6 mos. of that (meds for acid reflux) and he wasn't any better. Went in for an EGD. Diagnosed with celiac disease. They gave him some type of inhaler to help the "rings" in his esophagus ( result, we were told, of the celiac disease) go away. 6 months of that inhaler...still problems swallowing. Go back in for another EGD. They open his esophagus a little (again) and tell him to try that and see an allergist. Allergist says tree nut allergy and possibly soy allergy. Ok...so tree nut are out. I have been buying less food stuffs with soy in it (his orders...not mine...otherwise he wouldn't eat any soy at all). However, he STILL can't swallow normally.

Has anyone been diagnosed with these "rings" in their esophagus and do you have any suggestions?

Thank you.

Kelly

Gosh this must be so hard for both of you. I wish I had some answers for you other than the obvious that he HAS to stop consuming soy. If he has a problem with soy, the same as with gluten, a little bit will hurt him. I know it hard but he really needs to listen to the allergist on this one. In addition, and not intending to scare you here, if the allergist said it is an actual allergy and not an intolerance to soy there is the possiblity of the reaction going from a supreme annoyance to a life threating full anaphalyitic (sp) reaction without warning. If he is going to insist on going against the doctors orders you may want to enquire about an epipen if the doctor hasn't already mentioned it. Just in case.

happygirl Collaborator
happygirl
Posted

Those rings can be associated with eosinophillic esophagitis (check out www.apfed.org). It is linked to other allergies/intolerances. It would be worth looking into.

Laura

bookbabie Apprentice
bookbabie
Posted

Back when I was still really sick I had problems swallowing. Didn't have it looked at, just added it a long list of weird symptoms. My uvula was, and is still somewhat swollen, and may be the cause for me, doctor also said my throat opening was a little narrowed. Gradually the problem went away the longer my diet was clean, but it took a long time. I even started choking once at a restaurant on some stringy cheese. Dairy does tend to increase mucus secretion, whether you are "allergic" or not. My two cents is that he might be better off washing his meals down by sipping on some hot tea or plain warm water.

kelly z Rookie
kelly z
Posted
  • Author

Thank you everyone for your responses! I think the same on the soy...it's a no go. I've asked him to switch to something else to drink at meals...so at least he's thinking about it.

Thanks again!

Mango04 Enthusiast
Mango04
Posted

I used to have a problem where it felt like someone was constantly squeezing my esophogus with their hand and my throat always felt swollen and constricted. I hate to sound redundant, but it did turn out that soy was my problem (and it took me forever to figure it out, because I felt like that always, and not just when I ate soy).

darlindeb25 Collaborator
darlindeb25
Posted

I have the same problem, not as bad as your husband though. I have had it for years and years, I am not sure that celiac's is the cause for me. I was told years and years ago that my esophogus is malformed. I find there are certain foods that are worse than others for me to swallow. The worst thing ever, believe it or not, was pistaschio pudding. I would choke on that everytime. I used to have a big problem with bread too, yet I never have than anymore--not a problem for me now! Sometimes meat will choke me too--I find I must make very sure that I chew it very well before I swallow.

I never heard that this could be connected to celiac's too.

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alyssasgabby Rookie
alyssasgabby
Posted

I think I may know what you are describing-my doctor has told me I have Barrett's Esophagus, and you might want to have hubby ask his MD about it. I was told it's a "Reflux Change", and probably caused by celiac disease. Please, let us know how hubby does!

chrissy Collaborator
chrissy
Posted

i recently had a scope done and the surgeon clipped the ring in my esophagus in about 4 places to widen it. i used to get food stuck---it was really painful. i don't get food stuck since the scope, but i still am having trouble swallowing sometimes. it is like certain foods just drag all the way down. i don't have celiac---i was diagnosed with severe reflux esophagitis.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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