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Confused!


karenhockley

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karenhockley Apprentice

I really don't know where to start. I was diagnosed with Celiac when I was 14 months old, was put on a gluten free diet then when I was about 8 years old (1983) the Doctors at sick kids told my parents to start introducing gluten product. Since I was tolerating them well( about a year later), the Doctors told my parents that I was in remission! yes the doctors used the words remission! Then in my early 20's I started having really bad cramps and diarrhea, the doctor that I was seeing at the time said that I had IBS, when I asked if it could be Celiac and told him the history he said the doctors at sick kids gave you the wrong diagnosis once you have Celiac you always have it and you have to remember that they diagnosed you in the mid 70's! Not sure what he meant by that! So I battled that for years but whenever it got really bad I would go to a gluten free diet for a bit then I'd go back to my old ways. I have three kids now, my pregnancies were awesome, I had no problems what so ever but for the past 6 months the cramps have been unbearable! I don't remember when I've had a normal BM. I've made a appointment with my doctor but he's way for a week then he's busy with his patients and other doctors patients so my appointment with him is at the end of may. I've decided that I was going to go on the gluten free diet permanently, I'm not going back to my old ways. My question is am I doing the right thing and did the doctor really screw up back in the 70's? also if I go for the blood work won't the test be wrong because I'm no the gluten free diet? are there others in this situation?


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Angi McFarland Newbie
I really don't know where to start. I was diagnosed with Celiac when I was 14 months old, was put on a gluten free diet then when I was about 8 years old (1983) the Doctors at sick kids told my parents to start introducing gluten product. Since I was tolerating them well( about a year later), the Doctors told my parents that I was in remission! yes the doctors used the words remission! Then in my early 20's I started having really bad cramps and diarrhea, the doctor that I was seeing at the time said that I had IBS, when I asked if it could be Celiac and told him the history he said the doctors at sick kids gave you the wrong diagnosis once you have Celiac you always have it and you have to remember that they diagnosed you in the mid 70's! Not sure what he meant by that! So I battled that for years but whenever it got really bad I would go to a gluten free diet for a bit then I'd go back to my old ways. I have three kids now, my pregnancies were awesome, I had no problems what so ever but for the past 6 months the cramps have been unbearable! I don't remember when I've had a normal BM. I've made a appointment with my doctor but he's way for a week then he's busy with his patients and other doctors patients so my appointment with him is at the end of may. I've decided that I was going to go on the gluten free diet permanently, I'm not going back to my old ways. My question is am I doing the right thing and did the doctor really screw up back in the 70's? also if I go for the blood work won't the test be wrong because I'm no the gluten free diet? are there others in this situation?
Angi McFarland Newbie

I have been allergic to Gluten, CASSIEN, sensitive to dairy and sensitive to soy for a long time. I finally just recently had myself tested for Celiac's disease but the tests came back to not positive for that one.

I just know what makes me feel better. I know that the more I avoid all glutens and the rest of my allegin triggers I feel better. I wouldn't worry about getting a test result, you know what makes you sick and what doesn't.

I found that reading every label of every product does me the most good. I recomend reading as many posts on this website as you can and looking up food lists that have hidden ingrediants to make yourself feel healthier for the rest of your life. These allergies are not usually going to go away, but get worse with the more you get poisoned.

I hope this helps, good luck.

gluten-free,cf

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      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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