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Hello, I'm New And "almost" Diagnosed

LyndaCanada

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LyndaCanada Rookie
LyndaCanada
Posted

Hi everyone

My name is Lynda, and I live in Alberta, Canada. I'm a married 36 year old Mother of two little girls. I am probably more fortunate than most given that my diagnosis has been relatively quick. I became sick in November with severe diarrhea of course thinking I had the flu. Once it progressed longer than 2 weeks I knew something else had to be wrong. I went to my family dr. who ordered all kinds of blood tests, urine and stool samples,etc. which all came back negative for the standard things like eColi,etc.

She then ordered further testing like the small bowel follow through and barium enema but they couldn't get me in until after Christmas.

It wasn't until about a week before Christmas that I became so severely dehydrated from the diarrhea( 50 trips to the bathroom in a 24 hour period) that they did an emergency colonoscopy and thought I had a colon infection. I was sent home with antibiotics which for a time helped. But, of course when you're stomach is upset, what do you eat, crackers, soup, toast, all kinds of gluten and wheat and continued to get sicker and sicker.

Finally, they found in my biopsy that my villi were flat. They ordered the bloodwork for Celiac but it was negative, who knows why? Maybe someone here can tell me!LOL!

So my family doctor basically told me there was no possible way that I could have Celiac Disease. Well luckily, I had a follow-up appointment with the gastrenolgist(spelling?)and he told me the blood test isn't nearly as important as the biopsy. He sounds pretty certain I have Celiac since I was given the literature on it and already arranged a dietician appointment but he's doing ONE more small bowel biopsy on Monday. Trouble is that I have been doing the gluten-free diet for about a week which I guess is a no no but I was told by a different emergency room dr. to do it so I have to GLUTEN myself up this weekend, ughhh, I'm dreading how sick I'm going to make myself but I guess I've got to do it?

Even with the gluten-free diet, I've still had pretty bad diarrhea, about 15-20 trips to the bathroom a day but I suspect that I am hopefully not permanantly lactose intolerant. Does anyone know how common it is to become lactose intolerant with Celiac? I have LOVED dairy my whole life with no problems. I'm almost more sad about possibly being lactose intolerant more so that being Celiac:(

I also was wondering if the lactose intolerance will get better?

So, I'm bracing myself for the worst weekend, I was told to eat a loaf of bread a day for 2 days!! UGHH!!

So that's my story. In hindsight though, I can now see that some of the symptoms were there and I just didn't know it. I have been anemic for over 5 years and I also have been diagnosed with fibromyalgia and depression in the last year on top of being VERY itchy all over my whole body for about a year. I don't think I have that skin condition, I forget what it's called though.

I'm glad there are places someone like me can get support from others who know what it's like!:)

Lynda

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Rusla Enthusiast
Rusla
Posted

Welcome Lynda, where are you in Alberta? I am in Calgary. I would say you have your diagnosis with the flat villi. The flu that is going around is not helping us as I have had it for about a week the first day I vominted and the big D for 15 hours straight, every fifteen minutes.

Many times bloodwork will show negative and even sometimes biopsies will too. With bloodwork you need to eat gluten everyday and even then it can still show a false negative. The flat villi shows the Celiac. The thing is with reading biopsies it depends who the doctor is and what the doctor is who is reading it that week or month. If the doctor is not a doctor versed in Celiac then they will not see it as that. This was explained to us at the Celiac conference here in October, he was one of the specialists there.

Charlieswpa Apprentice
Charlieswpa
Posted
Hi everyone

My name is Lynda, and I live in Alberta, Canada. I'm a married 36 year old Mother of two little girls. I am probably more fortunate than most given that my diagnosis has been relatively quick. I became sick in November with severe diarrhea of course thinking I had the flu. Once it progressed longer than 2 weeks I knew something else had to be wrong. I went to my family dr. who ordered all kinds of blood tests, urine and stool samples,etc. which all came back negative for the standard things like eColi,etc.

She then ordered further testing like the small bowel follow through and barium enema but they couldn't get me in until after Christmas.

It wasn't until about a week before Christmas that I became so severely dehydrated from the diarrhea( 50 trips to the bathroom in a 24 hour period) that they did an emergency colonoscopy and thought I had a colon infection. I was sent home with antibiotics which for a time helped. But, of course when you're stomach is upset, what do you eat, crackers, soup, toast, all kinds of gluten and wheat and continued to get sicker and sicker.

Finally, they found in my biopsy that my villi were flat. They ordered the bloodwork for Celiac but it was negative, who knows why? Maybe someone here can tell me!LOL!

So my family doctor basically told me there was no possible way that I could have Celiac Disease. Well luckily, I had a follow-up appointment with the gastrenolgist(spelling?)and he told me the blood test isn't nearly as important as the biopsy. He sounds pretty certain I have Celiac since I was given the literature on it and already arranged a dietician appointment but he's doing ONE more small bowel biopsy on Monday. Trouble is that I have been doing the gluten-free diet for about a week which I guess is a no no but I was told by a different emergency room dr. to do it so I have to GLUTEN myself up this weekend, ughhh, I'm dreading how sick I'm going to make myself but I guess I've got to do it?

Even with the gluten-free diet, I've still had pretty bad diarrhea, about 15-20 trips to the bathroom a day but I suspect that I am hopefully not permanantly lactose intolerant. Does anyone know how common it is to become lactose intolerant with Celiac? I have LOVED dairy my whole life with no problems. I'm almost more sad about possibly being lactose intolerant more so that being Celiac:(

I also was wondering if the lactose intolerance will get better?

So, I'm bracing myself for the worst weekend, I was told to eat a loaf of bread a day for 2 days!! UGHH!!

So that's my story. In hindsight though, I can now see that some of the symptoms were there and I just didn't know it. I have been anemic for over 5 years and I also have been diagnosed with fibromyalgia and depression in the last year on top of being VERY itchy all over my whole body for about a year. I don't think I have that skin condition, I forget what it's called though.

I'm glad there are places someone like me can get support from others who know what it's like!:)

Lynda

Hi Lynda,

Lactose intolerance and Celiac disease go hand in hand. Lay off the dairy products and eat lots of rice. Rice does wonders for your intestines.

Good Luck

Charlie

LyndaCanada Rookie
LyndaCanada
Posted
  • Author
Welcome Lynda, where are you in Alberta? I am in Calgary. I would say you have your diagnosis with the flat villi. The flu that is going around is not helping us as I have had it for about a week the first day I vominted and the big D for 15 hours straight, every fifteen minutes.

Many times bloodwork will show negative and even sometimes biopsies will too. With bloodwork you need to eat gluten everyday and even then it can still show a false negative. The flat villi shows the Celiac. The thing is with reading biopsies it depends who the doctor is and what the doctor is who is reading it that week or month. If the doctor is not a doctor versed in Celiac then they will not see it as that. This was explained to us at the Celiac conference here in October, he was one of the specialists there.

LyndaCanada Rookie
LyndaCanada
Posted
  • Author

Thanks for the welcome everyone.

I'm in Edmonton and my dr. is Dr. Richard Fedorak who I know is really well known in the gastrointestinal field so I am thankful that I am in good hands.

Ohhh, I hope the lactose intolerance goes away though!:(

Lynda

Rusla Enthusiast
Rusla
Posted
Thanks for the welcome everyone.

I'm in Edmonton and my dr. is Dr. Richard Fedorak who I know is really well known in the gastrointestinal field so I am thankful that I am in good hands.

Ohhh, I hope the lactose intolerance goes away though!:(

Lynda

I have yet to have mine leave. Mine is a dairy thing, my whole family has a dairy thing. I sometimes do eat the dairy (bad me) but mostly I eat goat cheese then I don't suffer. I would sugges joining your local Celiac Chapter. They will give you a ton of great info.

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