Does This Drive You Crazy?

[newceliac]

I have been gluten free for approximately 9 months. During this time, I have had accidental glutenings, cross contamination and many hours spent researching and learning about this disease we call celiac. I have periods where I think that I am finally "on the mend" only to have a few days where I don't feel good. What I find frustrating is always feeling I am trying "to figure out" what caused it. These are the questions I commonly find running through my mind.

1) Is it something I ate that might have a hidden ingredient......OR was I contaminated in my own home by something......OR was it cross contamination where the product was produced?

2) Is the way I feel today still due to the accidental "glutening" last week OR is it something new?

3) If I feel crappy, is it due to something I ate today OR was it something I ate 2-3 days ago?

4) Do I have a new food intolerance now that is causing me to feel this way?

5) OR last but not least, is it something not even related to celiac that is causing me to feel bad?

Does anyone else with celiac ever feel like our life is totally consumed by all these questions when we go through periods that we don't feel good? Do we always really know what causes us to have times that we don't feel good? And do you just ever feel jealous when you see people that can eat anything they want all the time and NEVER have to ask themselves any of the questions I have listed above.

I am just tired of feeling confused and frustrated.

[darlindeb25]

You summed it all up! I think we have all asked ourselves those questions. There are times, when a celiac can be sick, not associated with celiac. Now myself, I find I do not pick up bugs from others so quickly, now that I have been gluten free for years. I think some celiac's bodies, not all, are very good at fighting off outside influences, we just battle within. Knock on wood, I rarely catch a cold, rarely ever have a virus of any kind. Yet, my intolerance's and allergies keep me very busy!

[MNBeth]

I can sooooo relate to what you're saying. We went on a cruise in June, and while it was amazing and beautiful, it was hard to have every meal be stressful for me when for everyone else, food was a major part of the "relax and enjoy" factor.

But, yeah, mostly I'm just tired of feeling crummy. I have major "monthly" issues, too, and between that and the gluten intolerance and the who knows what else, I feel crummy more than I feel good. I spent about 8 years trying to figure out my fatigue/mood issues before getting the GI diagnosis last fall, and the lack of improvement in those areas has been a major disappointment. Add me to the list of people who would mind being gluten-free less if I actually felt better.

(I finally did start w/ major stomach upset before I was diagnosed, so in that respect I do feel better off gluten than on. But the longer term issues aren't much improved, and I am sooooo tired of trying to figure out what causes what.)

<Sigh>

[jparsick84]

The best way to figure out if it's something old or recent is to keep a food journal and stick to whole foods for a while. Fruits and veggies are inherently gluten-free, as are most plain meats. This will help you create a "safe list" of foods you can eat, and can help greatly when others are asking you "what can you eat?"

For me, I can tell within 30 minutes if something had gluten, but I have mostly severe DH and hardly any GI symptoms.

You might also want to avoid artificial sweeteners for a while, as they can be VERY hard on your stomach. I too couldn't figure out why I kept getting sick - I finally realized that my daily diet soda was the culprit, and since cutting it out, have felt much better.

You have to be obsessed with your food, especially if you're still not feeling well. It's just one of the annoyances of this disease. But it will get easier, I promise. And when you finally start to feel better, it will totally be worth it!

[gfp]

I have been gluten free for approximately 9 months. During this time, I have had accidental glutenings, cross contamination and many hours spent researching and learning about this disease we call celiac. I have periods where I think that I am finally "on the mend" only to have a few days where I don't feel good. What I find frustrating is always feeling I am trying "to figure out" what caused it. These are the questions I commonly find running through my mind.

1) Is it something I ate that might have a hidden ingredient......OR was I contaminated in my own home by something......OR was it cross contamination where the product was produced?

2) Is the way I feel today still due to the accidental "glutening" last week OR is it something new?

3) If I feel crappy, is it due to something I ate today OR was it something I ate 2-3 days ago?

4) Do I have a new food intolerance now that is causing me to feel this way?

5) OR last but not least, is it something not even related to celiac that is causing me to feel bad?

Does anyone else with celiac ever feel like our life is totally consumed by all these questions when we go through periods that we don't feel good? Do we always really know what causes us to have times that we don't feel good? And do you just ever feel jealous when you see people that can eat anything they want all the time and NEVER have to ask themselves any of the questions I have listed above.

I am just tired of feeling confused and frustrated.

I used to feel the same way ....

Quite honestly I think everyone goes through that... I had to learn to let go...

Let me try and put it in a sentence...

"We do the best we can, its not always good enough but it's all we can"

Trying to pin down which meal (when it might have been something else entirely) can and will drive you crazy ....

Obviously we should try and learn but equally you have to know when to say "oops" ...

There are 1001 times EVERY DAY you risk glutening.. everytime you touch your lips you may have just opened a door someone eating a sandwich just touched... its not a big chance but its a chance... and we have 1000 a day little chances...

I found the best is to say "It's probably X or its proobably Y" but not try and be 100% because you can never be 100% unless its a "I forgot to read the label oops"...

Put everything down to experience, learn as you go....

[melmak5]

I was too in the same boat. It took me over a year to figure it all out... but it is possible.

For me it was cutting out gluten, dairy, soy, and drastically reducing portion sizes of everything and finding an IBS medication that works!

I feel like for the first time in a LONG time I am living, rather than day-to-day coping with my body. It is possible, I promise.

I second the keep a food diary/journal. It really helped me pinpoint what the hell was going on with my body.

[clueme]

I have been gluten free for approximately 9 months. During this time, I have had accidental glutenings, cross contamination and many hours spent researching and learning about this disease we call celiac. I have periods where I think that I am finally "on the mend" only to have a few days where I don't feel good. What I find frustrating is always feeling I am trying "to figure out" what caused it. These are the questions I commonly find running through my mind.

1) Is it something I ate that might have a hidden ingredient......OR was I contaminated in my own home by something......OR was it cross contamination where the product was produced?

2) Is the way I feel today still due to the accidental "glutening" last week OR is it something new?

3) If I feel crappy, is it due to something I ate today OR was it something I ate 2-3 days ago?

4) Do I have a new food intolerance now that is causing me to feel this way?

5) OR last but not least, is it something not even related to celiac that is causing me to feel bad?

Does anyone else with celiac ever feel like our life is totally consumed by all these questions when we go through periods that we don't feel good? Do we always really know what causes us to have times that we don't feel good? And do you just ever feel jealous when you see people that can eat anything they want all the time and NEVER have to ask themselves any of the questions I have listed above.

I am just tired of feeling confused and frustrated.

[clueme]

I am hearing you all the way! I have just been diagnosed two weeks ago and I am still hurting. Do any of you feel extreme fatigue? I can hardly function some days, and wonder if this is all part of it or if I have something else wrong as well.

I have gotten off all gluten so my stomach seems to be doing ok, but I feel this tiredness some days that I dont' know what to do and it is hard not to get depressed. I feel like this will be my life from now on. I am 59 years old and have been through two years of great stress. So I don't know if I should credit the gluten intolerance for my symptoms or if it is something else. I just feel very alone and scared that this will be my life from now on.

Have any of you experienced this?

[Milo]

I have lurked on this site quite a lot and it has helped me tremendously, but when I read this post I felt compelled to reply. All of the questions that you posed are exactly what has been going through my mind.

I have been gluten-free since January 9, 2008. A dunkin donuts chocolate chip muffin was my last gluten filled item that I ate on purpose. I still fantasize about it.

It is very frustrating because I have had some success, I have less gas and when I do have gas it does not smell as bad as it used to. I still have times when I have to run to the bathroom and everytime I do use the bathroom it is always D. I don't think I've had a solid bowel movement in years. I don't have the pain or cramping in my stomach anymore but I just want to be normal. I've realized that I cannot tolerate cheese, which makes me very sad. And I think I could easily follow the gluten free diet without all my cravings if I felt better. Because of course, every time I get D, I wonder if I have something unrelated to gluten and could my blood test have been wrong and I've gone without my chocolate donuts and yummy rolls for nothing.

I know that I have to keep a food journal and that might help me, it is just very frustrating as you all know because i was hoping I would be on the way to be healed and things would be gettng better.

I do feel better knowing that I am not the only one out there that has all these thoughts in their head.

[LuvMoosic4life]

yep. I'm right there with you. I think part of the reason though, too, is we start thinking about it TOO MUCH. Then when something just a bit off about our health pops up we immediatly jump to diet/celiac/what did I eat?? I try to remember that even normal people have bad days/occasional diarhea...ect..ect. Nobody ever has perfect health. although I think for a celiac, the "not feeling good" has a greater chance of being food related, but not always. I hate to even say it, but I definitly think into things way too much, which in a way, for a celiac is good when trying to analyze our diets, but there is a point when I start blaming it all on gluten/food allergies....

but yeah, it does drive me crazy!!!

[Gluten-Free Guy]

I can understand your frustration. It does get tiresome.

I see several comments about food, but another source of gluten is prescription and over-the-counter medications. Making it even more frustrating is the fact that manufacturers can change formulations or suppliers and an item (medicine or food) that is gluten-free today may not be tomorrow. You always need to read labels or call manufacturers.

With regard to medications, you need to call the manufacturers or visit www.glutenfreedrugs.com. But each time you get a refill, you need to check again.

I've had reactions that I thought were food-related only to find out that they were caused by medications containing gluten in the form of binders, coatings, flavorings, colorings, etc.

I'm sure you know that eating out is the riskiest thing a celiac can do. Not only restaurants, but also at the homes of family and friends, schools, treats at work, etc. You have to read labels and ask questions. I usually take my own food, heat it in the microwave, and enjoy socializing. I have found a handful of local restaurants that I can trust, including three that serve pizza. Finding them has made life a lot easier. The good news is that chefs and food manufacturers are getting the idea that the gluten-free market is growing and one to accommodate. I think we'll see a lot more availability in the next year or two.

In your posting, you mention cheating by eating the chocolate chip muffin. You should never, never, never cheat. Here's a paragraph I found on a medical website regarding gluten cheating: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

There are many good gluten-free recipes for anything you desire. I've found several that are so good you can't tell they are gluten-free.

I wish you well. I know it's not easy, but I also know you can be successful.

[aikiducky]

Maybe I can give you all a bit of a hopeful long term perspective?

I've been gluten free for almost 4 years now. The first TWO years were very much up and down, yes I absolutely did start to feel better but there were lots of days that I had stomach issues or gas or heartburn or I was moody or just plain fatigued. In between I felt better and better but I did spend a lot of time hunting down hidden gluten, too!

Somewhere along there I figured out that I can't have dairy, and that eggs give me nausea, and that nightshades and legumes also don't really sit well with me. Now don't be scared by that, it doesn't happen to everyone. And it seems that this really is the end of my intolerances, in the last year nothing has been added to my no-no list.

The third year I thought I was healed, I just felt good, I got glutened a couple times during the year but because I was just stronger and healthier in general, I got over those glutenings quicker than the year before.

But, unexpectedly, this year I'm feeling even better. I feel stronger, my endurance has improved, when I bike I notice I get to where I'm going faster than I expect so I guess I'm biking faster than I was. All kinds of little things like that. It's like last year (year three) my intestines were finally calming down, and this year the rest of my body has caught up.

Moral of the story - it might take you more than a year, it might take you more than two years. Whatever you do, don't give up on the diet too soon!

Pauliina