Celiac With Throat Squeezing

[kate12345]

I have a 5 year old with Celiac diagnosed by biopsy 6 months ago. She was completely symptom free but started back up with one symptom she had before diagnosis. It is, what she describes, as her throat squeezing. It is almost like she has spasms in her throat, at least that is what it seems to me. She will sometimes say if feels like food is coming back up or the neck area is sliding. The reg dr does not think it is reflux. I do not either as the meds (Xantac and Prevacid) are not making a difference. The reg dr and GI dr have no idea as to what it is. She is on Prevacid once again. Food allergies are limited to wheat on the allergy testing. I feel confident she is 100% gluten free. Even the animals are gluten free. If anyone recognizes this symptom, please let me know. She was tested for reflux during the endo, but that was neg. Thanks.

[KBGlutenFree]

Wow, sorry to hear about what's been going on - and that no doctors seem to understand what's happening. For about 2 years I had a strange sensation in my throat as well.... I explained it as either food getting stuck in my throat - or my throat closing up (which sounds a little like her "throat squeezing". I went to my regular doctor who had no idea and thought it was something wrong with my esophogus - and even had my throat x-rayed while drinking barium. Nothing was wrong with it. So, two years later - the reactions got worse and worse. It ended up actually being anaphylactic shock. I was allergic to beef and pinto beans (really strange food allergies to have, I know). But, it explained all those previous weird symptoms I was having. I was diagnosed with Celiac only a year later. Anyway... you said that she only has a reaction to wheat on the allergy test, but to be safe ....make sure she is avoiding it completely and maybe ask your doctor to prescribe you an Epi-Pen just in case.

[mommida]

There is now a proven connection to Eosinophilic Esophagitus for Celiacs.

My daughter was diagnosed as Celiac first, gluten free for 4 years and then these symptoms started. Really close to "glutening", but take on the vomitting. "Food came back up and went back down" in the throat. Honestly if the eosinophils are causing damage the swelling is causing the throat to close up (stricture). Food particles can get stuck in the throat.

This does seem to be increasing in diagnoses, still most medical professionals don't even know what it is. Do some homework and make sure your Ped. gastro. knows what to look for. It is mostly diagnosed through an upper endoscopy with biopsy. On diagnoses the patient is prescribed a modified steroid inhaler. (the spray is needed to swallow not inhale) Be carefull to prevent a thrush infection. Prevacid is usually prescribed too. You should be reffered to an allergist for testing.

Alas, EoE is not a "true allergy", most do not test positive for what the "triggers" are. An elimination to determine what "allergens" cause the eosinophil production. A Food journal is essential during this time. The tiggers can be food and/or airborn. Once acitivated eosinophils are active for 12 days.

Do a quick check yourself. Are the tonsils enlarged? Creamy patches in the back of the throat? An odd smell?

[jigsawfallingintoplace]

Oh my goodness! A light has just been switched on for me with this question - I am 42 and only discovered I am celiac this year - obviously now, I have had it from childhood with tons of symptoms that have been 'explained' away or worse unexplained over the past 40 years.

When I was a child I often complained of a 'chokey' feeling!! I felt like my throat was closing in on me and I felt nauseated. I was a terrible eater with little appetite and my mum thought I was just being picky and making it up because I didnt want to eat my food. I was checked out over and again by the doctor who always said there was nothing wrong (which didn't help my cause as he was basically saying it was all in my mind)

I just grew up living with it and like everything else a celiac does, just thought that it was me and that was how it was supposed to be and feel. You just get used to your own kind of normal in the end.

I did end up having bouts of tonsilitis as a teenager and had my tonsils out at aged 18. The feeling I think eased over many years - that and I had got used to it so probably desensitized to it.

It was only reading this that I remember how traumatic and stressful it was for me all those years ago.

As an adult, looking back I have had it on and off over the years but of course never ever ever thought of any connection with what I ate - like I say, I only recently fitted all the jigsaw together and got myself an unofficial diagnosis (positive DQ2 genes, symptoms, and then totally symptom free feeling like a new person on a gluten-free diet) so docs have accepted in principal I am celiac though I will never go back on gluten to get the endo.

Sorry I cant be of help as to what to do but I would bet the 2 are absolutely related

Jigsaw xx

[kate12345]

She was having this symptom in Nov when she had the scope done. Would they have seen this or would they have had to look for it?

Are you better off with a food allergist specialist or GI?

How is the best way to bring up the 'idea it could be this' to the dr?

Thank you.

[mommida]

This should have been visible in the scope. Sometimes the eosinophils are embedded into "normal" looking tissue. No diagnoses will be made if the pathology order doesn't list an eosinophil count. Make sure your gastro. is up to speed on EoE. Testing should be done because 1. negative symptoms are affecting your child, 2. there is a known connection between Celiac and Eosinophilic Esophagitus, &3. These are symptoms of EoE. *also symptoms of H. Ployri, congenital defect or damage, parasites, & the list goes on, but definately symptoms of EoE.

There seems to be a seasonal "flare" of symptoms, illness, and diagnoses. (late summer to fall) Get back into the ped. gastro. for diagnoses. An allergist referral was not helpful for my daughter's case at all.

Gastro. is needed for diagnoses and an allergy specialist is reffered for treatment.

[lcarter]

I tend to have this too, but mine is more triggered by sugars...especially upon the first sip of soda. It's more like a throat muscle spasm; definitely NOT a burp. It's like my body is saying, "NO WAY!" to the sugar. [besides the gluten sensitivity, I am Hereditary Fructose Intolerant] Anyway, since the trigger is gluten for your little one, perhaps it is just a reflection of the celiac disease..a warning of 'incoming' gluten and the body is rejecting it. My experience has been that doctors tend to be clueless about this throat thing. I don't know if an upper endoscopy would pick it up since it is gluten induced.