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What A Crappy Day

johnsoniu

By johnsoniu
in Coping with Celiac Disease

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johnsoniu Apprentice
johnsoniu
Posted

10 days into being gluten free and things were going well. Felt much better and actually enjoyed being in the kitchen again. Then yesterday afternnon, wham! Worst cramping and bloating since December, and eventually D all night. Didn't eat anything yesterday that I hadn't already had earler in the diet, think I got CC'd from an old plastic bowl at work I used to heat up some leftovers for lunch. I used to use it for Campbell's Chunky Soup, which would trigger the exact same reactions.

Anyhow, feeling a little better this morning and the toast and banana seem to be sitting all right so far, 3 hours now.

Then the doctor called a half hour ago. We had our two daughters tested Monday. 14 year old came back negative(yeaaa!) but the 9 year old tested positive. He's sending her to Riley's Children Hospital in Indianapolis for further testing and confirmations. Rats. She's 9 and lives for cereal and Mac & Cheese. Although this does bring her recent troubles with ADHD and migraines into proper focus.

Thanks all, venting over. Now on to see if I can start gaining some of the weight back some of the weight I lost last night that I had worked so hard this week to gain( weight loss is a major issue with me, by the time I was finally diagnosed my malabsorption had turned to non-absorption, my magnesium,potassium,calcium, albumin, sodium, and chloride levels had all dropped to critical levels and had to be hospitalized and hooked up to IV's and a heart monitor).

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Guhlia Rising Star
Guhlia
Posted

Luckily your little one will still be able to have mac n' cheese and cereal... Cocoa Pebbles and Fruity Pebbles are both gluten free as well as Disney's Little Einsntein's, Mickey Mouse Clubhouse, and Dora's Cinnamon Stars. They are all readily found in mainstream grocery stores. Tinkyada pasta and Kraft orange cheese powder in a shaker (or Velveeta) make a mean mac n' cheese! You can make the mac n' cheese in bulk and then freeze it so that it's easy to heat up for lunches or snacks. She will adjust to the gluten free diet just as you are. And, it will make her life so much easier once her symptoms resolve she will likely not even look back. Plus, you are saving her (by putting her on the gluten free diet) from a lifetime of mysterious ailments, aches and pains, etc. This really is a positive thing. It may be easiest to make your entire household gluten free now that two of you have tested positive. This way you (or whoever cooks) won't feel the need to make two seperate meals for the family. Plus, making the house gluten free will cut down on temptation and contamination sources.

johnsoniu Apprentice
johnsoniu
Posted
  • Author
Luckily your little one will still be able to have mac n' cheese and cereal... Cocoa Pebbles and Fruity Pebbles are both gluten free

Fruity Peebles are gluten free!!!??? Darling, you just made MY day. My cereal was thing hardest thing for me to give up. :P

As for this all being for my daughters best in the long run, oh absolutely! As I said earlier, this will help so much with the ailments(symptoms?) that have plagued her the last year.

kbtoyssni Contributor
kbtoyssni
Posted

I buy Kraft mac and cheese, take out the cheese packet, give the noodles to a friend and use the cheese with gluten-free noodles. There's something about boxed mac and cheese...

cajun celiac Rookie
cajun celiac
Posted
I buy Kraft mac and cheese, take out the cheese packet, give the noodles to a friend and use the cheese with gluten-free noodles. There's something about boxed mac and cheese...

WHAT A GREAT IDEA!!! I'm going to do that tomorrow! You are a genius!

bremac Apprentice
bremac
Posted
I buy Kraft mac and cheese, take out the cheese packet, give the noodles to a friend and use the cheese with gluten-free noodles. There's something about boxed mac and cheese...

Seriously????!!!!! That is such a good idea!!!!

johnsoniu Apprentice
johnsoniu
Posted
  • Author
WHAT A GREAT IDEA!!! I'm going to do that tomorrow! You are a genius!

Tomorrow nothing! A friend of mine gave me a box of Glutino brown rice elbow macaroni at church tonight, said they were the best she's found. Saw kbtoyssni post about the kfraft idea and raced off to the kitchen. Just finishing off my second helping.

KB, you're an angel and a genius!!! Thank you bunches

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babygirl1234 Rookie
babygirl1234
Posted

my day was crappy, stomach pains, feeling blah tired of taking pills all i want to do is feel better how long does it take for your celiac disease to get under contol ?

larry mac Enthusiast
larry mac
Posted
I buy Kraft mac and cheese, take out the cheese packet, give the noodles to a friend and use the cheese with gluten-free noodles. There's something about boxed mac and cheese...

kb,

There is something about boxed mac & cheese; I'm with you there. My daughters (now that they're grown) like the fancy schmancy deluxe with the squeese cheese. Sorry, no can do. Too mild; not near enough good old fashioned kraft mac & cheese flavor. I'm supposed to pay extra for less flavor? I don't think so. You don't mess with a good thing.

You try to bring your kids up the best you know how, and this is how they repay you?

BTW, I like to condense everyone's user name down to as small an abbreviation as possible, yet incorporate all syllables or parts. Your ruining my evil plan. What's up with that name?

yours truly, stumped in wylie

lm

Canadian Karen Community Regular
Canadian Karen
Posted
Tomorrow nothing! A friend of mine gave me a box of Glutino brown rice elbow macaroni at church tonight, said they were the best she's found. Saw kbtoyssni post about the kfraft idea and raced off to the kitchen. Just finishing off my second helping.

KB, you're an angel and a genius!!! Thank you bunches

There are even some stores where you can buy the Kraft cheese packets in a box by themselves, without the noodles...... Kids never know the difference! LOL!

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
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