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Here Is My Story!

talula2

By talula2
in Coping with Celiac Disease

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talula2 Apprentice
talula2
Posted

I just wanted to thank everyone on these boards because I no longer feel alone in this never ending battle. Here is my story....^ years ago I went on a south beach type diet to lose a few pounds after having my first baby, I was never heavy in fact always skinny but after baby needed a bit of help. Felt great while eating this way, but started to experience a bit of bloating and water retention, took no notice. After a couple of years I ditched on this diet and just ate what I wanted that being gluten, gluten and more gluten. I felt awful most of the time but didn't put it all together. I kept getting worse and every dr. I went too said IBS or depression (sound familliar). I kept getting thinner now I was underweight. I became pregnant with my second an that is when all hell broke loose. I craved every ounce of sweet food you could imagine and would eat it and eat it like crazy I didn't want anything but carb foods and dairy!!!! I had the hardest time gaining weight in fact I was losing as well while pregnant and feeling like hell most of the time, so emotional. well needless to say the pregnancy didn't go well and we almost lost our baby due to low amniotic fluid, I was on bed rest from 28 weeks on until we had her at 36 weeks she was born healthy. Me on the other hand after my c-section was in horrible shape. I couldn't eat anything at all after that, I couldn't digest carbs, dairy was out, wheat made me feel so bad I felt like I was someone else. For two years up until now I have walked around in a fog, irritated all the time, so bloated it is just not normal, my water retention in unbareable I can gain up to 7 pounds in water over night, which I think is giving me an eating disorder because I am afraid to eat anything and when I eat the wrong things it is all the sudden a huge rise on the scale. My pms is out of control I feel so far from myself. My poor husband doesn't fully understand because he doesn't experience it at all. I did go again to anothger dr who once again said IBS and post partum depression, I had to beg to see an allergist but was able to get an appointment. There they found a slight wheat allergy only 1 on a scale of 4. Dairy and soy as well with possible egg white and sugar was a no no. So his advice was not to eat wheat in exess a bowl of cereal or a sandwich a day is more than enough. I did notice that everytime I ate something with wheat in it that I would balloon up in my tummy, within a couple of hours, massive water retention, complete mood change, tired but the worst thing was the following days after.....I would wake up next morning weak and tired, angry, water logged, I started to develope recently breating problems after I have wheat or gluten of any sort kind of a shortness of breath. My heart would race, I would get a pain under my left rid cage that last about a week and my muscles feel so sore even to touch gently. My dr thinks I am nuts because all of my testing came back negative. They did all 5 test for celiac and all negative it doesn't even show up that I have any gluten issues so they say I need to just let it go and get on with my life. I have every symptom ypu could think of, I also have scoliois since a child, and bouts of hypoglycemia STRANGE. I decided in Jan to go gluten free and I felt fantastic still certain food bloated me up, but overall I felt much better. I went on vacation and ate all the things I shouldn't have and am still recovering. In fact this is as bad as I have ever felt. Went back to the dr. they said must be intestinal irritation maybe I have a bacterial ovegrowth.... but doesn't gluten problems cause that anyway. I am back on the gluten free diet now in fact I am just eating fruit and veg until my tummy settles as I still get bloated, not nearly as bad though. So once that is over I am going back to gluten free for ever. I don't need a dr to confirm how I feel or a test to say it either but it would be nice if there was a bit of understanding on the part of the dr's. I am going for more allergy testing and another appointment with a GI in September but until the it is gluten free for ME. Sorry long boring post but really I was just getting it off my chest. I have to admit that I feel so much better at the moment I am only eating fruit and veg right now but I don't have any joint pain , water retention, or even general feeling of flu I have so much more energy. I feel like I could live like this forever. Almost a different person. I even notice a bit of muscle tone in my arms is this possible in just a month. I will slowly start adding back in a food at a time to eliminate what I can't eat. Although I am a bit afraid after I am feeling so well to eat anything els but I will need more food that fruits and veg. I can't tolerate carbs at the moment my guess is that is from some intestinal damage and am hoping that I will be able to eat a bit of corn once and a while after healing. Sorry again for going on and on. I am just so happy to have found this sight for support. Even though I don't have celiac, negative testing I am convinced that I certainally have a huge gulten problem and am going to contine living as if I do. Thanks for listening to me rant and rave about this.

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YoloGx Rookie
YoloGx
Posted

You are most welcome to the boards! No doubt you will become healthier and healthier and more and more informed!

You aren't the only one here that is simply gluten sensitive. Its actually a lot easier to deal with than if you did have celiac.

Nevertheless sometimes celiac is very hard to diagnose. If it turns out you are really sensitive to even trace cross contamination of gluten then you really may have (undiagnosed) celiac. Let's hope that isn't the case however!

And yes, your health is your business ultimately, not your doctor's! Obviously being off gluten is helping you a lot. They say its not really good for anyone since its hard for people of any stripe to completely digest it. It thus can be the root for many degenerative diseases. By going off it you may have increased your life span as well as happiness!

Bea

goatmilkpower Newbie
goatmilkpower
Posted

First of all I'd just like to extend my support out to you :) I'm in the same boat myself right now and am incredibly frustrated. I too have gotten to the point where I can't tolerate any grains since I'm so damaged right now. I basically live on goat milk yogurt. I too have been incredibly discouraged lately and reading your post makes me feel a little better knowing that there is someone else going through the same thing as me- my doctors too brushed off my symptoms and I had to figure out that I was Celiac on my own. Sine being gluten-free I've been a world better but still have my hiccups here and there. best of luck to you!

stillclueless Newbie
stillclueless
Posted
First of all I'd just like to extend my support out to you :) I'm in the same boat myself right now and am incredibly frustrated. I too have gotten to the point where I can't tolerate any grains since I'm so damaged right now. I basically live on goat milk yogurt. I too have been incredibly discouraged lately and reading your post makes me feel a little better knowing that there is someone else going through the same thing as me- my doctors too brushed off my symptoms and I had to figure out that I was Celiac on my own. Sine being gluten-free I've been a world better but still have my hiccups here and there. best of luck to you!

I, too, am brand new to this site and find it incredibly supportive to know I'm not the only one who has gone through these things. I had had radiation through my intestines for a gynecological cancer and was not recovering as I should have. In fact, I was losing ground and felt like I was dying - indeed, I was. An insightful, understanding health professional was wonderful and put me on a careful, restrictive, elimination diet - mostly canned fruits, fresh, cooked or juiced vegetables, and some white rice. For about three weeks my time was spent resting and preparing my food, but I'm sure it saved my life. At that time I could tolerate no dairy, no soy, etc., but as healing began and continued, I now only have to limit milk intake - but can tolerate moderate amounts of some dairy products - and I have absolutely no tolerance for any gluten. As far as I know, those are now my only restrictions. To "goatmilkpower", I love how you say you're "so damaged right now." I think it won't necessarily stay that way; we can heal, and more options will be available to you in a while. I had felt so lonely and scared, but over the last two or three years have found almost a "sub-culture" of gluten-free people. And yesterday stumbled on this website. Wow... I would have given anything to have been clued in three years ago when it all hit. Thank you, everyone, for sharing.

talula2 Apprentice
talula2
Posted
  • Author

That is so amazing that you say that about the fruit and veggie because a week ago I was feeling so bad that I was afraid of food and went on an elimination diet myself with fresh homemade juices and slightly steamed veggies and purred soups. After a few days I have to say I started to feel so much better, my aches and apins lifted my water retention left and my bloated tummy was deflating. I was full of energy . So now I am on a journey to find my culprits as of course gluten , dairy and soy are ou as I have tested positive for those FA's but now and I also will leave out all the major ones such as peanut, egg, night shades as well until the end. I know this will take sometime to do but I am giving my self the summer months to work it out. So far I have been safe with spinach and berries, carrot and apples so I will continue everyday or two to add something new until I am able to have a good variety of food. To be honest with you living off of all these fruit and veg has made me feeli alive again like mmy system is having a well deserved rest. I feel better than I have in years wether that is the no gluten in my body or the rest of my system I will certainall take it.

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