Constipation stomach issues and 22q

   I have changed mine and Bella's diet off and on with doctors help and this was the results.

consider this my before picture I can't wait to see what the after will look like.

consider this my before picture I can't wait to see what the after will look like.

 

After my own health deteriorate and no answers from the medical community, I took matters into my own hands and researched all I could on gasteroparies, after I had Bella I had gained so much weight that I needed to loose weight and discovered major intolerances, and hitial hernia, as well as gallbladder and kidney stones, were my issues. I ended up having test one test after the next done, I had swallow testing done and I had a bravo capsule done. My final test was a 3-hour radioactive egg sandwich test where I had to digest an egg sandwich in three hours. The only thing was my food didn't move not one oz we now have a much happier, healthier me but I gained even more weight trying this trial and error diets and changes. First I took away the gluten and that wasn't so much the issue but the amount of gluten I would have so as long as I limit the white bread and pasta I do okay with gluten. I took dairy away and switch to lactose-free and any other kind of milk alternative they had out there and found I did best on lactose-free or almond milk.  The one common factor we both had, however, was a history of hypocalcemia, Gerd, acid reflux, and anemia.  We both went on a low acidic diet and things changed hugely for us. Bella had more success with it I think because I waited too long to make the lifestyle changes. 

The lifestyle changes lead to rest and recovery and lots of soups, broths and mushy foods.

The holidays, church potlucks and family outings were the worst places of struggle.

 

I started this blog in 2014 during that ordeal because I needed a outlet to share my experiences.

I wanted to make sure no one else felt alone and isolated like I did and still do to a extent when it comes to support from the online community so I built my own tribe to speak

 

 

 I then took this experience and went and changed Bella diet a bit at a time not as drastic as I have and she too does much better on a high protein diet and low carbs.

Both Bella and I have struggled with constipation I make a green smoothie and add Miralax to the smoothies. 

I only use it when in dire need to empty the stomach.

There is a big debate on even using Miralax and that's up to you to decided I am not here to change your mind one way or another.

I feel having Miralax too often is not good and if your body has to become dependent on a stool softener then there is something that needs further looking into our body's job needs to naturally work and function even if we are missing a genetic piece of DNA that tells our bodies how to function that means we have to work twice as hard at keeping up with the good for us stuff in our bodies. 

My downfall is an addiction to coffee I have one cup a day and most will say it not a bad thing which it truly isn't for most people but for people with issues like us caffeine in our guts turn acid and that slows digestion down. There are studies that also say the opposite is true and there even studies that suggest coffee before a workout.

So everything in moderation I say. Miralax is another issue there are a ton of parents who swear against the use of it at all while others give it to their kids daily with no questioning of it. Myself I question everything it is part of who I am. I have come to the conclusion that everything in moderation is key. That's my personal take on it.

I do better on the opposite kind of diet soft bland soups and mushy foods work best for me. The difference is Bella has cp and I don't. I have gastroparesis and we both have 22q deletion syndrome so when I say no two people with this disorder is exactly alike I mean even in families with the same genetic markers because we have to add my husband in the mix of Bella's genetic traits as well.

Bella lucked out in the diet department she does not gain too much weight no matter what we feed her she does grow taller as she ages. 

Bella burns calories like she runs fast and quickly. High protein meals and she loves a good chicken salad.

I hope to spread the word to those caring for someone who has genetic disorders that diet really can help. It all a process of trial and error and what works for one might not work for someone else. 

Now because Bella and I both have a history of hypocalcemia we have to stay on top of our calcium intake but hypocalcemia is not the kind of thing that can be fixed like iron can say by eating a ton of things with iron can help a person with anemia which both Bella and I have on top of Calcium. We both take liquid multivitamins because it absorbs easier and we take it at night because of our body process minerals and better multivitamins night. 

The struggle I have is weight loss because the things I can eat is mostly carbs based and I have so few calories during the day that my body is storing fat.

I even had doctors prescribe pills that had the effect of stomach emptying out and yes I did loose weight with the pills but I felt awful and if I could be so bold to say litterly shitty. 

My key to staying healthy is I have to really focus all day on making meals and eating smaller mini meals with the larger meal being at lunch and a smaller meal at night.

I also have to drink a lot and struggle to stay hydrated gateraid has been a huge help even if it has extra calories which is okay because I struggle to get 1200 calories in a day as it is. The work of prepping foods and menu plans it is exhausting but I am getting back on track now that Adam is starting his new job things are going to be different he is going to focus on bringing in the paycheck and I'm going to find the time to focus on my personal health and exercise again. Win win I think for us.  I don't think I will blog about my personal weight loose journey here but I'll use a different site like myfitness pal because it is a accountable thing that I would need.

I had so many parents I mentor ask me about diet how it effects me I hope this helps give a inside look at the daily life of how a adult with 22q and a child with 22q eats daily.

Have you had to change your diet?

I would love to hear your experiences leave a comment below.