difficulty swallowing Help

[Britgirlunusa]

So my son (age 20) was diagnosed with celiac early Feb 2018. He had symptoms since November so was a fairly quick diagnosis. Around December he started developing a swallowing difficulty which has progressed a lot in the last few weeks. He found swallowing liquids hard but now food is getting harder. During the few months before diagnosis he lost about 15lbs and probably another 10lbs since. I’m really concerned he isn’t getting enough calories and nutrients. He has seen every specialist from gastro to ENT to allergist plus ct scans barium swallow X-rays you name it and everything for swallowing comes back normal. Anyone else had this issue related to their celiac? If so what helped. He is also going for counselling because it is causing him so much anxiety. So number one any ideas in the swallowing and number two after nearly 5 months gluten free how can I get him to gain weight. 

Thanks worried mum. 

[Ennis-TX]

First off is to go over the newbie 101 section and make sure there are no sources of contamination. You have to replace several things starting off like cutting boards, scratched pots.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Remove some others foods helps many times like dairy and oats, and going to a whole foods only diet.
Dairy is often a issues as our damaged villi do not produce enough of the enzymes to break down the dairy.

Try easy to eat high fat/protein foods like Nut meal porridge, nut butters, protein shakes with plant based protein powders. I have used Nutra-Key V-Pro, MRM Veggie elite blends in the past, but now days make my own form Jarrow Pumpkin, Julian Bakery Pegan (their protein pars are good to), Naked Pea, and a few others on rotation. They also make a celiac targeted shake called pioneer Labs Celiac Support which might help him put on weight.

I would also see about talking to a doctor about getting a panel done to check for nutrient deficiencies. Common ones are magnesium, vitamin D, full spectrum of B-vitamins, iron. We find many times due to the damaged intestines we have to supplement, the b-vitamins and magnesium can lead to anxiety, stress, muscle fatigue and a bunch of other issues. Do research the deficiency of each and see if they match his symptoms.  I use Doctors Best, or Natural vitality calm for magnesium, the Calm works best with constipation if you have D issues then Doctors best.
Liquid Health makes a liquid B-vitamin formula called Energy & Stress, Neurological support I take 1 tbsp each 3 times a day along with their D3 drops twice a day, you can find these on vitacost, or amazon.

 

[Britgirlunusa]

Thanks for all the info. We have all gone gluten free and been on top of all those suggestions. He just had a panel done yesterday and D is low so I already have liquid d3 which he started with today. Thanks for the info on shakes, will try those and your other suggestions. So difficult to watch him struggle so much just to get his food and drink down.

[Ennis-TX]

5 minutes ago, Britgirlunusa said:

Thanks for all the info. We have all gone gluten free and been on top of all those suggestions. He just had a panel done yesterday and D is low so I already have liquid d3 which he started with today. Thanks for the info on shakes, will try those and your other suggestions. So difficult to watch him struggle so much just to get his food and drink down.

Yeah I find most days  I still prefer and do better on blended diets or soft diets like omelettes with steamed veggies in them, blended soups, mushy cooked foods.  Basically I cook stuff to mush for 2 of my meals a day to make it easy, and I find I do much better with blended soups, shakes, and porridge which I make from coconut flour, nut butters, and protein powders for a base. As he heals he might enjoy soups, stews, sheet pan meals, crock pot meals, and stir fries more but often a simple whole foods super soft diet is easiest. If he gets discouraged I have a whole list of gluten free everything, sort of something you can say "in a few months of healing I might be able to handle that gluten free {pizza, cookie, bread, etc.} I personally have to stick to low carb, grain, and dairy free for additional issues. Just some thoughts if he is having issues with foods still. Digestive enzymes might also be needed if say he has undigested food in the stool or puked up hours later (one of my issues I found)

OH one more thing, intolerance and food sensitives are common with this disease, so keeping a food diary and going to simple diet if your having issues is the standard. Many find they have issues with not just gluten and dairy but sometimes soy, peanuts, legumes, nightshades, spices, corn, grains, etc. Some do go away with time.
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[knitty kitty]

Perhaps it is Eosinophilic esophagitis?

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Eosinophilic esophagitis occurs with Celiac Disease sometimes.  They don't know exactly why the two occur together... There have been other posters with both these diseases.

Hope this helps! 

[Britgirlunusa]

Thanks I hadn’t heard of that before and he definitely has some of those symptoms. We will look into it. Thank you

[cyclinglady]

I agree with Knitty Kitty.  Ask about EOE.  It seems that celiacs can often have other hypersensitivity (Google types) issues outside of autoimmune.  

I hope  he is better soon!