Regret Being Gluten Free?

[BethM55]

I am almost regretting going gluten free. Granted, I feel better now, as long as I STAY gluten free. However, it seems I get more sensitive to it all the time. It's frustrating! Just plain frustrating! Fortunately I don't have reactions as severe as those for some folks here, but I can't help but feel like I'm heading in that direction. Is there any logic to keeping a minute amount of gluten in my diet so my body won't freak at the slightest contact? I'm probably being childish and petulant here, but unless the whole world is de-glutenized, living any sort of normal life is just so very difficult.

I appreciate you folks here listening even to silliness like this, because I know you understand the frustration of it all. Thank you for letting me vent.

[ravenwoodglass]

No there is no benefit IMHO to keeping 'a little' gluten in your diet. If you do the antibodies will never stop attacking you. The reason your body is reacting more strongly to gluten is because it is trying to protect. When you get bits of gluten or CC it starts a 'flare up' of the antibodies which makes us miserable. As hard as it is especially at first, it is important that you be as gluten free as possible.

We also have ups and downs while we are healing and if you are pretty new to the diet that may be happening. Have you cut out dairy and watched how much soy your eating and drinking? Some of us feel better if we cut those both out at first. It is hard at first but your in a good place for support with that. Ask any questions you need to and we will try to help make things a bit easier.

[GFinDC]

Hi Beth,

I totally agree that you should not keep a little bit of gluten in your diet. Bad, bad idea. I was also surprised when I went gluten free and I seemed to become much more sensitive to it. I think it is because you are starting to heal, and your gut is going to feel the attacks more intensely now. Or something like that, I don't have a perfect answer on it. But I do think you are correct about it being more intense after gluten-free and there have been a number of threads by people saying they experienced the same thing.

A woman posted not long ago about going off the diet. A few years later she ended up in the emergency room and they had to cut out 2 feet of her celiac destroyed small intestine. It is not something to play around with.

When starting out it is good to adopt a very simple whole foods diet. No processed foods at all, including gluten-free goodies. This will allow you to heal faster and also you won't spend all your time reading labels in the grocery store. So think about eating rice, eggs, fruits, nut, vegetables, meats, things like that. Forget the breads, cookies, etc.

This kind of diet will keep a lot of gluten, soy, food colorings, preservatives, and just plain junk chemicals out of your diet. In other words you won't be pickling your insides every time you eat. Oh right, that sounds silly but might have a little truth to it. Preservatives really make me wonder. They are used to prevent bacterial growth (anti-biotic effect) and fungal growth (anti-fungal effect). So are they messing with the beneficial bacteria we need in our digestive system? Could be possible I think. See, never ask a simple question Beth!

[DownWithGluten]

My reactions were always unbearable, which is what drove me to do this diet in the first place.

After going gluten-free...for me...it hasn't gotten worse. The two times I've "glutened" myself, it was the same as before, in all of its awful glory. Served as painful reminders of why I go through all the extreme headache of being on this diet.

[dilettantesteph]

I have felt the way that you do a lot. Even with being so sick before, it was so much easier, and with all the glutenings it doesn't even seem that much worse. I think that part of it is the gluten depression talking. I can sure see why someone who didn't even have bad symptoms to begin with might just not want to do it. But, as the others brought up, there is that possibility of early death, cancers etc. Oh, well. I guess we have to stick with it!

[NorthernElf]

I've thought about this quite a bit too...my reactions have definitely gotten worse after going gluten free.

I have several theories though...my mom asked me this once because I am so sensitive now - did going gluten-free make it worse ? Yes & no.

How does one know they wouldn't have gotten worse anyway ? I have talked to one woman who was suspected of having stomach cancer because her reactions were so severe - turns out to be very sensitive celiacs. How long did she have it before it got to this point ?

One lady I know is a diabetic and became anemic - turns out she had celiacs but no stomach symptoms. I have lost touch with here but I would be interested as to whether or not she has developed stomach issues. Is it just progressive ? There is something to be said for having stomach symptoms - I think it would be easy to cheat (and damage ones self) if one didn't.

It also seems to be cummulative - a little CC here, a little there and the reaction becomes immense & longer lasting. Seems to me that sometimes we are "getting" ourselves & we don't realize it. Also, once we're down we are very vulnerable to getting hit again - bigger and worser !

Of course it all comes down to this - when you get to the point of having to go gluten free, there is a reason. You are ill and experiencing all sorts of symptoms. Is it a choice at all ? Not for me. I was getting sicker & sicker and it took awhile to find out why. There is no way I could go back.

I think one of the most frustrating things if finding out what "got you" sometimes. It can be hard, esp. since once one is "down" it seems anything one eats irritates !

[BethM55]

Thank you all, I appreciate your wisdom and support. Although I've been gluten free for more than a year, I think it's just now sinking in that this is forever. I think I was hoping I'd heal and it would all go away. Reality sucks, and I need to get used to it. I need to focus on what I CAN eat, and how much better I feel, living gluten free. On good days, I notice how quiet my digestive system feels. I think I didn't realize how unhappy it was before, or that that it was abnormal to feel that way.

Next month we are going on a vacation, 10 days of fun and adventure, and eating out. I'm worried and scared, and suspect I'll be eating a LOT of salads. I'll bring food with me, (Udi's bread!) but we are flying, so there will be a limit to how much I can bring. Our first stop is Spokane, WA, perhaps I'll post a query here for advice on where to buy supplies there.

Thank you. I'm so very grateful to have found this board, to not be alone with this struggle. I'm also very glad to know others have gotten more sensitive to being glutened after going gluten free. At least within my own community I'm normal!

[PacifiGirl]

I was just diagnosed with celiac disease last Monday and it came as a total shock since I didn't have any of the stomach or digestive problems. I've wondered, too, about having a bit of gluten here and there. I asked my doctor about it and she said I could every now and then but just to know that it would take my body 4-5 days to heal. I've been really good with my gluten-free diet and just today the headache came out of nowhere. It feels like a dehydration headache. I'm hoping it doesn't stick around too long.

[misslexi]

I've got the exact same issue, it feels so much worse now when I accidentally eat gluten. But I've wondered if thats just because of the contrast? Before I was sick constantly. Now if I'm good for a few weeks then I get glutened, does it just seem worse because I'm feeling better most of the time? But wouldn't it make sense too, for the reaction to be stronger because your body is healing and getting stronger in general?

Good luck on your vacation! Still be careful about salads though, I've gotten glutened by a salad I ate out, no crutons and no gluten in the salad dressing.

[BethM55]

I think it does make sense that we react more strongly to accidental 'glutening', once our bodies are clear of it for awhile. Sad but true. Maybe it is just a bigger contrast between how we feel being gluten free as opposed to the constant feeling of illness we were used to before. Does that make sense? Anyway, there is a risk of contamination anywhere and everywhere, so I'll have to be super careful while we are on vacation.

Thank you for all the great responses!

[Gemini]

I think it does make sense that we react more strongly to accidental 'glutening', once our bodies are clear of it for awhile. Sad but true. Maybe it is just a bigger contrast between how we feel being gluten free as opposed to the constant feeling of illness we were used to before. Does that make sense? Anyway, there is a risk of contamination anywhere and everywhere, so I'll have to be super careful while we are on vacation.

Thank you for all the great responses!

I think, Beth, with this statement, you have hit the nail on the head. The reactions do not get worse but when you are now feeling really well, they seem to be a lot worse....downright torturous sometimes!

You will be fine on vacation....I go to Europe and eat out at dinner for 2 weeks at a time and have never become ill. People there get it and there are many choices that can easily be made gluten-free. I have had great luck here in the States also so after awhile, it becomes second nature. You have to live life!

[BethM55]

Thanks, Gemini. Your comments are very encouraging. I appreciate your support!

[brigala]

Just want to say quickly that although, at first, my glutening reactions were worse than the symptoms I'd had before going gluten-free, over time as I got better and had fewer and fewer "accidents" the accidents I do have have been more mild.

I was glutened at a restaurant the other day (even after carefully talking to the server etc. etc. etc.) and by the time I was done eating lunch I felt like all the blood had drained from my face and I had to hobble to the bathroom... you can probably guess the rest. It was unpleasant but it wasn't nearly as bad as some of the other glutenings I've had (the last one was about 8 months ago). In fact, it wasn't as bad as I used to feel every day before I eliminated gluten from my diet entirely.

The severity of the attacks definitely got better after I made my whole kitchen gluten-free and started strictly limiting the frequency at which I eat anyplace other than my own kitchen (or the kitchen of a fellow Celiac or a specialty gluten-free restaurant). It took time, but I will never look back and I'm never tempted to eat anything I think might be contaminated -- let alone something I know has a gluten ingredient in it.

[SuperMolly]

The reactions do not get worse but when you are now feeling really well, they seem to be a lot worse....downright torturous sometimes!

When I have a reaction now I wonder, "How did I live and function every day feeling like this?!" Praising God that I finally feel better now. I also am thankful(sometimes)that I get sick from gluten because it reminds me that I am not making this crazy disease up.