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Gluten Challenge

darkhorse

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darkhorse Apprentice
darkhorse
Posted

I was tested for celiac disease (kinda) by a doctor who didn't know anything about it other than I "didn't want it." He only ordered two of the blood tests and I don't remember the name of them. I didn't see the results, but supposedly they came back normal. I decided to eliminate gluten (and then quickly realized I also needed to eliminate diary) and the results speak for themselves. I have many of the symptoms including all the gastro symptoms and this "stomach problem" runs on the women's side of my family. My mom refuses to get tested because she doesn't want to commit to the diet even though she has had stomach surgeries and is severely anemic, but that is another issue.

I went around my doctor and scheduled an appointment with a GI doctor in town (Dr. Lewey, a contributer to this site) and the appointment is for May 5th. I have been gluten free for a little over two weeks, but I would like to get tested for celiac by someone who knows what they are doing. I am also fine doing the biopsy if that will help. The problem is that I need to go back on gluten in order to be tested, but I feel so good I really don't want to. I keep thinking that I will wait until my appointment, but at that point I will have been gluten free for just about a month.

If I need to do a gluten challenge, would it be better to start eating gluten now and so as to minimize my time off of gluten? Do you think I would need to do a shorter challenge that way? My other thought is to wait until my appointment, but then I would need to do a longer challenge right?

I personally don't really need an official diagnosis, because I will never eat gluten (and possibly dairy) again. My mind is made up on that point, but my mom and possibly my sister are suffering from this as well and I think they would take it more seriously if I were to get an official diagnosis.

Any thoughts on this would be appreciated. :unsure:

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ravenwoodglass Mentor
ravenwoodglass
Posted

For any chance of the testing to come out accurately you need to get back on gluten today. Even then you may still have a false negative. Do note how you are feeling now and I would note in detail your symptoms when you go back on gluten. Chances are you are in for some miserable days but you have no chance of being diagnosed if you are gluten free or gluten light.

darkhorse Apprentice
darkhorse
Posted
  • Author

I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

  • 3 weeks later...
Libbyanne Newbie
Libbyanne
Posted
I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

Hi Darkhorse!

Any chance you can update us on what you decided as far as going back to gluten or if you've had your tests? I am in the same boat - been gluten free for 3 weeks but recently started to add it back in so I can get tested. At first I was excited to eat pizza again (I hadn't made it far enough to bake my own gluten-free pizza yet) but now I find myself avoiding gluten foods because of all the reactions I have. I very much want an answer but I also want to know how long I need to go back on gluten for! It's especially hard after I've told people around me that I'm not eating it and if they see me eating it I feel like they will disregard me as a hypochondriac who just wants attention <_< . That is so far from the truth...I just want to know for sure so I can stop worrying that it might be something else AND like you I would like my sisters to get tested as I see a lot of my symptoms in them...

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