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Keep Messing Up and I am Paying for It

Ginger38

By Ginger38
in Coping with Celiac Disease

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Ginger38 Rising Star
Ginger38
Posted

I am trying but I keep messing up… between coffees with gluten containing syrups and seasonal candies that aren’t gluten free but don’t say so on the bags and other cross contacts I am repeatedly messing up and now I’m really paying for it. I am so miserably sick and don’t seem to be getting better. The mess ups with gluten were frequent within the last 2 or 3 months bc I had a lot of coffees before realizing the syrup had gluten. I also was having quite a bit of candies not realizing they weren’t gluten free. The most recent mess up or possible cross contact was in the last week. My stomach is such a mess. I am living in the bathroom. I am dealing with a ton of gas, bloating and abdominal pain. And I guess bc my stomach is so messed up and irritated and inflamed trying to eat much of anything is aggravating it,salad, cucumbers,  things with fiber.. beans, high fiber pasta, tomatoes etc. I am MISERABLE. Any ideas or guesses on how long until I should start feeling some better or any advice on how to help myself in the interim? Also Is there anything that helps diet wise or doesn’t help? Thanks for any help!! 

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Nick Cheruka Contributor
Nick Cheruka
Posted
1 hour ago, Ginger38 said:

I am trying but I keep messing up… between coffees with gluten containing syrups and seasonal candies that aren’t gluten free but don’t say so on the bags and other cross contacts I am repeatedly messing up and now I’m really paying for it. I am so miserably sick and don’t seem to be getting better. The mess ups with gluten were frequent within the last 2 or 3 months bc I had a lot of coffees before realizing the syrup had gluten. I also was having quite a bit of candies not realizing they weren’t gluten free. The most recent mess up or possible cross contact was in the last week. My stomach is such a mess. I am living in the bathroom. I am dealing with a ton of gas, bloating and abdominal pain. And I guess bc my stomach is so messed up and irritated and inflamed trying to eat much of anything is aggravating it,salad, cucumbers,  things with fiber.. beans, high fiber pasta, tomatoes etc. I am MISERABLE. Any ideas or guesses on how long until I should start feeling some better or any advice on how to help myself in the interim? Also Is there anything that helps diet wise or doesn’t help? Thanks for any help!! 

Hi I can relate to what your going through, been there done that old saying! I got diagnosed with Celiacs over 20 yrs ago and it took over 4 yrs back then with Dr’s, GI’s and Specialist to get the answer of Celiacs Disease! It is a life long Gluten Free lifestyle that has gotten me healthy again! It has not happened over night by any means! I had to be strict on myself and educate myself on Celiacs Disease and what Gluten is and what it’s in and even hidden in! I do not and will not consume anything that I know for sure is Not gluten-free! If you cheat or accidentally consume gluten your basically go right back to where you are now, thats all of us Celiacs! You have to be your own health advocate to getting better with this horrible auto immune disorder  named Celiacs! I cook and my wife cooks everything at home we know is gluten-free no exceptions. I can’t remember when I had a flair up last by accidental gluten exposure! Prior to getting sick over 20yrs ago I weighed my heaviest at 165lbs. over the course of trying to figure out the problem I went down to 117lbs. at the diagnosis point I was 117lbs lost a ton of muscle and fat! Since going totally gluten-free over 20yrs ago I am now up to 145-150 and gained back all the muscle through work outs in the gym and eating gluten-free only! I have learned to read all ingredients prior to buying anything and if it contains Gluten or if I even suspect it in the ingredients I don’t buy it! Life is to short as it is and I want to be here as long as I can be and be healthy while doing it! I hope this helps! Know your not alone in the struggle you just have to be careful what goes into your body in order to live healthy even with Celiacs! Good Luck and I hope you get better soon! 

 

cristiana Veteran
cristiana
Posted
(edited)

Hello Ginger38

I am sorry you have had such a rough ride of things.

I have had similar experiences, such as, 

  • the time was taking an iron supplement that wasn't gluten free (I mistook Floradix for Floravital)
  • a trip to France where I found the labelling very lax (it may have changed more recently) and I felt dreadful.  Had a TTG test on my return and my numbers had soared, even thought I'd not eaten out.  I was trusting packaged food to declare gluten, when it didn't. 
  • More recently I've had a gluten free soup at my Dad's (labelled)  which it clearly wasn't.

and the list goes on.

You say: "And I guess bc my stomach is so messed up and irritated and inflamed trying to eat much of anything is aggravating it,salad, cucumbers,  things with fiber.. beans, high fiber pasta, tomatoes etc."

When my gut was damaged at diagnosis I found certain fibrous food, such as peas and lentils really irritated my stomach.  Soy in anything. Oats (even the gluten free variety).  However, I noticed root vegetables were fine.  I could get vitamin C from watered down smooth orange juice.   I made a mental food diary and soon began to see patterns emerging.  Just for the moment, I'd suggest you stay with foods you know you can trust, and then gently reintroduce the high fibre foods in time.

You ask: "Is there anything that helps diet wise or doesn’t help?"

If you are a meat eater, I would suggest cooking chicken, potatoes and carrots in water, at a low heat for several hours, until the whole thing is really tender and almost falling apart.  It can be blitzed to make a healing soup, or eaten as a stew.  This should be very gentle on your stomach.  Because you can make a large batch it means you have a few days meals in the fridge. 

Also, you may be temporarily lactose intolerant if your villi are damaged.  Have you tried cutting out lactose for a few days to see if that helps?  This may reduce bloating and pain.

If like me you have gastritis-like symptoms (burning stomach, back pain, indigestion) or reflux related to this damage you might like to follow a gastritis/reflux diet for a few days to see if that helps, there are plenty of them online, but essentially it means small, regular meals, avoiding caffeine, fatty, acidic and fatty food.  I find sipping chamomile tea or a drink made with slivers of root ginger in hot water really makes my stomach feel better.

Occasionally I take a very short course of over the counter or prescribed PPIs after a glutening, in your own situation it might help just for a very few days.

Out of interest, when did you have your last coeliac review?  It might be worth finding out if your struggles are wholly linked to your unintended glutening.  It could be that you have some other gut issue that is complicating things.  My GI has discovered I have IBS as well as Coeliac, so even when things are going well with my diet, I still can have bouts of diarrhea or constipation.

I hope some of the above is of some help.

Cristiana

 

 

 

Edited by cristiana
patty-maguire Contributor
patty-maguire
Posted

I'm so sorry you're going through this.  You're in the right place though.  We all understand and we've all been there.

When I get hit really bad, I often go for a total reset.  Clear fluid diet for 24 - 48 hours then when returning to food I go with the BRAT (bananas, rice, applesauce, toast) diet for a day.

If you decide to go with clear fluids for a day or two make sure to keep up your electrolytes.  Gatorade is good and clear soup or broth.

Peppermint and ginger are good for digestion and can help with gas and diarrhea.  Sipping a little peppermint or ginger tea can be quite soothing.

As for the frequent mess ups - my best advice is to cook and eat at home as much as possible, at least for a while.  Take your coffee and snacks with you from home.  If you need to grab something while you're out keep it very simple.  Coffee with cream and sugar, nothing fancy.  As you start to feel better and more confident with the diet add treats in carefully and not before researching to make sure they are gluten free.

All the best.  Feel better soon.

Scott Adams Grand Master
Scott Adams
Posted

It might be a good time to start over, and totally reset. This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

 

This article, and the comments below it, may be helpful:

 

 

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