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How Do You Emotionally Deal With Setbacks?
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Wow.  Squash are the bomb.  Ok.  Get a nice Acorn Squash, they are orange and green, I like some good orange color on the rind.  Knock on it.  Should sound a bit hollow, it has seeds.  Wash it good, cut it long ways thru the center.  put about a 1/4 - 1/2 inch of filtered water in a baking pan.  put the two halves, cut side down, in the pan and bake at 350 or so for about an hour.  When done the squash will be nice and soft.  I eat mine plain but some people put some butter and cinnamon or brown sugar sprinkled on theirs.  I think they taste great by themselves.  Another one is Spegetti Squash.  This one you cook and then you can use a fork and run it down the sides to make a linguini type string.  Season to taste.  Over on the "What's for Dinner" thread, they make Zoodles.  I think its zucchini made into noodles.  The members on the dinner thread know how to make any kind of food into all kinds of different ways.  You should check it out.

 

Colleen

Thanks! Grabbed an acorn squash today...so excited to try it!
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I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?

 

I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.

 

And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(

 

I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.

 

How do you deal with it?  Get through it?

 

Thanks!

 

 

 

I get mad at myself for having celiac disease. It's not my fault, but I just get so mad that I have to be so difficult! So I totally get the emotional aspect you are feeling. I have been Gluten Free for almost 2 years, with a handful of incidents where I either wasnt careful, or threw caution to the wind and ate something Gluten filled, stupid, stupid.  Even after almost 2 years, this morning I held a donut in my hand and was actually bargaining with myself. I was saying, I'm not working until 43o tonight. I can eat this and then take a nap and be fine! why not?

In the end, I didn't do it. Sure, my immediate reaction to eating gluten doesn't last long, a couple hours at most and I can sleep it off and feel fine when I wake up, but what damage am I causing internally? Sure, I was diagnosed with celiac disease formally, but even my Dr thinks it may be intolerance and not so much full blown celiac disease, but it could or could not really be celiac disease. All my tests were negative, all blood work, biopsy, etc. But my symptoms disappeared when I stopped eating Gluten so she just went ahead and made the diagnosis. 

Do I really want to bargain with myself though? No, its not worth it. 

The point Im trying to make is that I don't think the emotional aspect ever really goes away. Im not as emotional as I was, but I do have my days. 

What I do to get over it is find something delicious to eat or keep my mind occupied. I have noticed an increasing intolerance to dairy products. I have a lot of the same symptoms as I did when I was eating gluten, but I get them right after eating ice cream, or too much cheese/cream. I have problems when I eat too much corn products and even too much sugar. 

So what you ate may not have been the chocolate chips, you could be developing an entirely new set of food problems. 

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I get mad at myself for having celiac disease. It's not my fault, but I just get so mad that I have to be so difficult! So I totally get the emotional aspect you are feeling. I have been Gluten Free for almost 2 years, with a handful of incidents where I either wasnt careful, or threw caution to the wind and ate something Gluten filled, stupid, stupid.  Even after almost 2 years, this morning I held a donut in my hand and was actually bargaining with myself. I was saying, I'm not working until 43o tonight. I can eat this and then take a nap and be fine! why not?

In the end, I didn't do it. Sure, my immediate reaction to eating gluten doesn't last long, a couple hours at most and I can sleep it off and feel fine when I wake up, but what damage am I causing internally? Sure, I was diagnosed with celiac disease formally, but even my Dr thinks it may be intolerance and not so much full blown celiac disease, but it could or could not really be celiac disease. All my tests were negative, all blood work, biopsy, etc. But my symptoms disappeared when I stopped eating Gluten so she just went ahead and made the diagnosis. 

Do I really want to bargain with myself though? No, its not worth it. 

The point Im trying to make is that I don't think the emotional aspect ever really goes away. Im not as emotional as I was, but I do have my days. 

What I do to get over it is find something delicious to eat or keep my mind occupied. I have noticed an increasing intolerance to dairy products. I have a lot of the same symptoms as I did when I was eating gluten, but I get them right after eating ice cream, or too much cheese/cream. I have problems when I eat too much corn products and even too much sugar. 

So what you ate may not have been the chocolate chips, you could be developing an entirely new set of food problems. 

Hi KMMO...I'm actually wondering if I'm getting a new set of food problems too...why does that happen to so many celiacs?  Anyway, starting last Monday I went down to like 6 foods that I listed above and each day have added 1 or 2 things.  So, I'm at like 14 things now.  But, I'm doing better.  No D since Friday...yay!  And I guess I'll keep doing this and see what happens.

 

I'm sorry that you get mad at yourself for having celiac disease...it's not your fault, you didn't bring it on yourself.  Now, you are living with it and hopefully thriving with it...but don't be mad at you.  :)   I've been mad at the disease for sure and said very mature things like, "I hate this stupid autoimmune disease!"

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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