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Newbie: mother to coeliac kids

Midwitch

By Midwitch
in Coping with Celiac Disease

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Midwitch Newbie
Midwitch
Posted
  • Author

I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 

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tessa25 Rising Star
tessa25
Posted

Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous.

Things that I think would be safe are:

broth

mashed potato soup (the am. cheese and butter make the broth taste great)

Baked potato

mushy meatballs, no spices other than salt

low fat vanilla ice cream with whey in the ingredient list

 

If these things work out try adding summer squash cooked in olive oil, add salt

Summer squash tastes good in mashed potato soup.

 

Twice as many small meals are easier on your digestive system.

 

I am not a doctor or nutritionist, just been there, done that, want to help.

 

kareng Grand Master
kareng
Posted

If I am rembering correctly,  Marsh 4 is the worst damage.  So he should avoid dairy products like cheese, milk, butter, cows milk ice cream for a couple of months. celiac damages the tips of the villa that help to digest lactose ( which is in most dairy).  Being unable to digest dairy will lead to more bloating, gas, etc.. 

cyclinglady Grand Master
cyclinglady
Posted
45 minutes ago, tessa25 said:

Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous.

Things that I think would be safe are:

broth

mashed potato soup (the am. cheese and butter make the broth taste great)

Baked potato

mushy meatballs, no spices other than salt

low fat vanilla ice cream with whey in the ingredient list

 

If these things work out try adding summer squash cooked in olive oil, add salt

Summer squash tastes good in mashed potato soup.

 

Twice as many small meals are easier on your digestive system.

 

I am not a doctor or nutritionist, just been there, done that, want to help.

 

Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best.  Avoid all processed foods.  If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!!  Many celiacs are lactose intolerant until healing occurs (for life if you are genetically lactose intolerant like many Asians, for example).  Many celiacs have developed additional foods intolerances, so it is recommended that you keep a food and symptom journal.   Some folks might be corn intolerant and other might have issues with nightshades (like potatoes).  Others might have issues with even a good veggie like cauliflower.  I personally can not digest cauliflower after a good glutening for some unknown wacky reason. 

What I am trying to say, is that everyone has to figure it out on their own because we all have different issues related to celiac damage.  Lactose intolerance is the most common and a good place to start especially with SEVERE intestinal damage like Marsh Stage 4.   

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Midwitch said:

I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 

Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage.  My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage).   But that's not important.  Your boy's health is more important!   I can see why he is suffering so much.  The good news is that he should feel well much faster because he is young.  My heart goes out to you and your family!  

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Midwitch said:

Yes, the broth helps. He wolfed some down and felt okay.  He insists he didnt eat anything from his friends. He did however gobble several gherkins last night - I checked they were gluten free but I am wondering now.  Dammit. He loves gherkins.  

If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt.    If pickled, he might be reacting to any of the ingrediants even though they could be gluten free.   Often, celiacs develop several food intolerances.  Lactose intolerance is the most common.  

I'd recommend keeping a food diary and well-cooked stews, soups for a few days or weeks until his symptoms improve.  

Good Luck!

 

Midwitch Newbie
Midwitch
Posted
  • Author
1 hour ago, kareng said:

If I am rembering correctly,  Marsh 4 is the worst damage.  So he should avoid dairy products like cheese, milk, butter, cows milk ice cream for a couple of months. celiac damages the tips of the villa that help to digest lactose ( which is in most dairy).  Being unable to digest dairy will lead to more bloating, gas, etc.. 

Yes, I am avoiding dairy also. I think it has made him vomit in the past. 

 

Oh heck. Wait. I gave him gluten-free Up and Go in his lunch yesterday.  Dam I am such a doofus. I was trying to get some meat on him.  No more up and go.  

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Midwitch Newbie
Midwitch
Posted
  • Author

Righto. Keeping a food diary is what I will start tomorrow. Thanks everyone. :)  

On the plus side Mothers Day is this weekend (here in NZ anyway) and my eldest son is cooking a roast for us. He was very intent on making sure he gets everything gluten free. I am impressed with his dedication. He has read labels and educated himself even though this won't affect him at all - he doesnt live at home. My sister is also reading up and educating herself as she wants him to be able to eat when he visits.  Its good there is some family support out there or I would feel like a mother dragon protecting her precious egg.  

squirmingitch Veteran
squirmingitch
Posted

You surely have a special family there. Hooray for your eldest son making sure his brother is safe. That's a huge reflection on the way you raised him mom. Good job!

Your poor boy is probably going to feel icky for a while with that kind of damage. Also, for the first 6 mos. - a year, we can have ups & downs like being on a roller coaster. Some great days & then BOOM, you have a totally crappy day or 2 or 3.

Well cooked everything for him. Mushy veggies, mushy cooked fruits, go very easy or not at all on spices for a while, keep up the bone broth, crock pot stews and soups. You're doing a great job Midwitch, it takes a while to get all the rules down and by that I mean besides the gluten free rules -- the tailored to the individual rules and they will change as he heals so you'll be adapting all along the way. 

Once everyone is tested it might be easiest to take the household gluten free and the kids who can eat gluten can do so outside of the home. It sure does make things easier especially with your large crew and you a working single mom.

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