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tisci02

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tisci02 Newbie
tisci02
Posted

Hi everyone. I'm 25/f/MA. I went to my doc last week & explained that I thought I was gluten sensitive. I've had bad stomach issues for over 6 years now & was told it was most likely IBS & lactose intolerance. Even w/avoiding milk & oily foods (which I thought caused the diahrrea) I was still getting sick. I was diagnosed at 9 w/juevenile rheumatiod arthritis & hypothyroidism, which I know are common w/people w/Celiac.

The doc is skeptical of me having Celiac because I'm not deathly ill, but ordered the blood test anyways. She told me to go gluten free for a few weeks & if the blood test comes back negative, to then eat some gluten & see how it effects me. I'm still trying to get used to paying super close attention to what I eat & today I accidentally ate some gluten. Within a few hours I was suffering from bad cramps, gas & diahrrea, along w/all around feeling drained. I ate around 1:20pm & it's now 10:30 pm & I'm so uncomfortable I'm just laying in bed. I can't fall asleep & it hurts to be in a sitting position. Is it safe to say that even if my blood test comes back negative, I definitely have some kind of issue w/gluten?

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Wolicki Enthusiast
Wolicki
Posted
Hi everyone. I'm 25/f/MA. I went to my doc last week & explained that I thought I was gluten sensitive. I've had bad stomach issues for over 6 years now & was told it was most likely IBS & lactose intolerance. Even w/avoiding milk & oily foods (which I thought caused the diahrrea) I was still getting sick. I was diagnosed at 9 w/juevenile rheumatiod arthritis & hypothyroidism, which I know are common w/people w/Celiac.

The doc is skeptical of me having Celiac because I'm not deathly ill, but ordered the blood test anyways. She told me to go gluten free for a few weeks & if the blood test comes back negative, to then eat some gluten & see how it effects me. I'm still trying to get used to paying super close attention to what I eat & today I accidentally ate some gluten. Within a few hours I was suffering from bad cramps, gas & diahrrea, along w/all around feeling drained. I ate around 1:20pm & it's now 10:30 pm & I'm so uncomfortable I'm just laying in bed. I can't fall asleep & it hurts to be in a sitting position. Is it safe to say that even if my blood test comes back negative, I definitely have some kind of issue w/gluten?

Yes, I think it's safe to say. You may find, as many of us have, that many times your own body knows better than your doctor. False negatives are very common with blood tests. If you feel better off gluten, then you have your answer. You will find many friends here. Feel better soon!

tisci02 Newbie
tisci02
Posted
  • Author

Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

Wolicki Enthusiast
Wolicki
Posted
Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

As you browse around here, you will find that many of us have experienced the same thing. I think that docs start pulling the "it's all in your head" card when they don't know or are not willing to dig until they find what is wrong. I was sick for 10 years and diagnosed with everything under the sun before the Celiac dx. I didn't have any of those things, like Lupus and adrenal insufficiency. It was gluten all along causing the problems. Good luck with your new doctor. I have a new one in December and am holding out hope that this one will be different. Good luck to you! I will keep a good thought for you!

carsondcat Newbie
carsondcat
Posted
Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

I first started being ill aged 18 months, after having a bout of pnuemonia, failure to thrive and all that goes with it such as delayed puberty followed, I remember always being starving hungry and when the TOM started things went from bad to worse i was at the Drs every few months and they would put me on iron supplements and tell me to go away, 10 years later i had the diagnosis of Hypochondriac, I was not diagnosed until 2001, which was 38 years after i first showed the signs of Celiac Disease (upon reading i had all the "classic" signs and symptoms). I thought my "D" was normal what would i know... the first time i passed a fully formed motion it was pure agony, i felt it going around the ascending and descending colon, I cried with the pain of it, to be graphic i could even see it moving around my abdomen, it remained extremely painful to go to toilet for quite a while. I have been strictly gluten-free since my blood tests and biopsy in 2001, and i still have trouble keeping weight on and I'm still very small. I still struggle with anemia and low haemaglobin. I have brain fog a lot..

Please keep on, keeping on, i hope you find a health professional that will really listen to what you're saying, because at my worst the pain would be so bad the sweat would roll off me and it would have me curled up in the fetal positioning trying to rock the pain away in tears of agony, it hurt after everything i ate and everything i drank even if it was a glass of water. Don't allow yourself to get as bad as that 6 years is far too long already...

tisci02 Newbie
tisci02
Posted
  • Author
I first started being ill aged 18 months, after having a bout of pnuemonia, failure to thrive and all that goes with it such as delayed puberty followed, I remember always being starving hungry and when the TOM started things went from bad to worse i was at the Drs every few months and they would put me on iron supplements and tell me to go away, 10 years later i had the diagnosis of Hypochondriac, I was not diagnosed until 2001, which was 38 years after i first showed the signs of Celiac Disease (upon reading i had all the "classic" signs and symptoms). I thought my "D" was normal what would i know... the first time i passed a fully formed motion it was pure agony, i felt it going around the ascending and descending colon, I cried with the pain of it, to be graphic i could even see it moving around my abdomen, it remained extremely painful to go to toilet for quite a while. I have been strictly gluten-free since my blood tests and biopsy in 2001, and i still have trouble keeping weight on and I'm still very small. I still struggle with anemia and low haemaglobin. I have brain fog a lot..

Please keep on, keeping on, i hope you find a health professional that will really listen to what you're saying, because at my worst the pain would be so bad the sweat would roll off me and it would have me curled up in the fetal positioning trying to rock the pain away in tears of agony, it hurt after everything i ate and everything i drank even if it was a glass of water. Don't allow yourself to get as bad as that 6 years is far too long already...

I had no outward signs of it as a child. I was anemic & had arthritis & hypothyroidism. I do remember being very young, about 4 years old, when the stomach problems started. There were times on & off, beginning at that age where I would have the sweats from the pain. I would sit in the bathroom & cry because my stomach hurt so bad. The doctors told my mom it was stress. I was also having stomach issues from a medication & they put me on Zantac. I would have months at a time where I would be perfectly fine. I also had a lot of other health issues going on when I was young though, mono, viral meningitis & other sicknesses. I think my stomach issues were looked past because of everything else. I just started to get really bad when I was 19. At this point, I didn't think much about my stomach problems because I was so used to them.

luvthelake21 Rookie
luvthelake21
Posted

It is so sad to hear that it takes so long for people to get diagnosed. My daughter was diagnosed in 2 weeks and had her endo. and was on a gluten free diet with in 4 weeks and 3 years later she has not had many problems with the diet,after the greiving process of course. First I took her to a ped. gastro doctor. He as the one to diagnose her. She wanted to change doctors after he left her gown open during her endo. test.So we looked and found her a adult gastro doctor. Both of these docs were young and her new one is of foreign decent. It seems like forein doctors have more knowledge than American Doctors. It seems like foreign countrys are more prone for people having Celiac so the doctors know to check for it. Some countries check all kids at there 5 year old check up. Keep looking and you will find the right doctor. This is just our experience.

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tisci02 Newbie
tisci02
Posted
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I got a letter from the doc today saying my panel was normal. They didn't give me numbers or anything, just said it's normal. I got really sick from eating gluten the other day so I'm gonna stay off it for now. I am going to a new doc in February & they're supposed to be a lot better than the place I go to now, so I'm going to talk to them about it. I didn't eat a lot of gluten in the first place, so I don't know if I eat enough for my levels to be high. Since I had such a strong reaction from eating it after being gluten free for a week, I would really like for them to look into it a little further.

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