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Worsening Symptoms

browneyedgrl73

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browneyedgrl73 Rookie
browneyedgrl73
Posted

I posted about a month ago wondering if I had celiac disease. I have been to a doctor since then, and am going back in 4 days to get the results of my blood test. He put me on a lactose free diet in the meantime, but that doesn't seem to be helping. My symptoms are spiraling out of control rapidly. I can barely eat anything without feeling so sick to the point that I have to lie down. My parents are yelling at me to eat, but honestly I can't. The only meal I can manage is breakfast, because I feel decent when I wake up. It's all downhill from there.

My question is: can symptoms worsen in a matter of several weeks, like they have for me? I've lost 5 lbs this week because I can barely eat! :o

Thanks!

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KaitiUSA Enthusiast
KaitiUSA
Posted

Yep, that happens. I had so many up and down days before I was gluten free. Once my symptoms started they just got worse and worse.

When I went gluten free then my symptoms didn't start really improving until the 3rd month. Some people see differences right away and some it takes alot longer.

Do you have any idea what blood tests he did?

mytummyhurts Contributor
mytummyhurts
Posted

Yeah, this happened to me too. My symptoms started gradually and then it seems like it was BOOM really sick a lot of the time.

frenchiemama Collaborator
frenchiemama
Posted

I had moderate celiac disease symptoms for about 10 years and DH for 2 years. Then in the weeks before I was diagnosed everything just seemed to take a nosedive after being pretty stable for so long. I was pretty sick for a few weeks.

jknnej Collaborator
jknnej
Posted

Me, too. I always had stomach issues, but before I got my blood tests I got SO sick to my stomach for about two months that I had to force myself to see a specialist b/c I could barely even work. That's when I found out about celiac disease.

browneyedgrl73 Rookie
browneyedgrl73
Posted
  • Author

Thanks for responding!

Kati- No I do not know what tests he did, but he said he was doing "every test possible" (and he sure took enough blood)

I'll post when I get the results

Guest kmmolina
Guest kmmolina
Posted

I'm fairly new to celiac so I don't know if this is comon or just me. When I finally went to the doctor and he was going to have me do the blood tests and the biopsy he told me not to be gluten-free because he didn't want to get a false negative. He actually told me to "splurge" on gluten!!! :o So I did. By the time I got to the biopsy I was feeling horrible...even worse then before.

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mytummyhurts Contributor
mytummyhurts
Posted
I'm fairly new to celiac so I don't know if this is comon or just me.  When I finally went to the doctor and he was going to have me do the blood tests and the biopsy he told me not to be gluten-free because he didn't want to get a false negative.  He actually told me to "splurge" on gluten!!! :o  So I did.  By the time I got to the biopsy I was feeling horrible...even worse then before.

<{POST_SNAPBACK}>

Yes, your doctor is right. You want to be on gluten when you have your tests done otherwise your intestines may heal and then you would show negative for celiac disease. It does really suck that you have to continue to be sick, but at least you know it wasn't all for nothing. Did your biopsy come back positive?

Guest kmmolina
Guest kmmolina
Posted

Yes, it did come back positive and I have been trying to be gluten-free since then. The obvious stuff, i.e., wheat bread, wheat pasta...that's easy. It is eating out, eating at other people houses, and the hidden stuff that is a constant challenge.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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