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Gi Appointment Scheduled - Woot!

chilligirl

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chilligirl Apprentice
chilligirl
Posted

So way back on October 13th my doc gave me my blood test results. I'd gone to see him because I'd been feeling like crap for over a month, super run down. I also asked for him to test me for celiac, because I have like, every symptom (except for being skinny, but I was until I got married, lol). It was of particular concern to me because, while I've dealt with the anemia, GI problems, ADD symptoms, etc. my whole life so they're not a big deal to me (sounds weird I know, but I've never been "healthy", so the chronic diarrhea/constipation cycle, for example, doesn't bug me - it's just life), dh and I have been struggling for 4 years with ttc and unexplained infertility. We both check out all good, we even tried fertility drugs, but no go.

Anyway, blood work came back that I was BRUTALLY anemic (again *sigh*) AND positive blood test for celiac.

I was actually really excited about that, because it means there's something I can DO about my health, and maybe even getting pregnant!

Bad news? Doc insists I don't go gluten-free until after my biopsy, as it will muck up the results (and the diagnosis) if I go gluten-free ahead of time.

Well of course the specialist he referred me to was off on holidays for a few weeks. But, today I got my appointment booked! It's actually on remembrance day - they're open on the holiday because they're so backlogged with patients. It's just a consult and THEN they'll book the scope/biopsy. But still, it means soon I can go gluten-free and start taking charge of my health!

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TrillumHunter Enthusiast
TrillumHunter
Posted

Your positive attitude is great! Most any question you have about the endoscopy can be answered here. Keep in mind, the endoscopy isn't perfect and misses some cases. If this happens to you, remember you don't need permission to go gluten-free.

The waiting is always tough.

dmurth01 Newbie
dmurth01
Posted

Sounds like we're on the same track, chilligirl!

I also got blood tested for celiac recently and came back positive. I was all ready to go gluten-free right away but thank god I came here and read that it would cause problems with my next set of testing.

So, my appointment is all set for Nov. 24th. I almost cried when they said there was nothing available sooner, but I'm remaining positive while I suffer through this month.

Also, it will be nice to have one last normal Thanksgiving I suppose... though I'm sure it will be painful. :(

Good luck and keep everyone posted!

Yup Apprentice
Yup
Posted
So way back on October 13th my doc gave me my blood test results. I'd gone to see him because I'd been feeling like crap for over a month, super run down. I also asked for him to test me for celiac, because I have like, every symptom (except for being skinny, but I was until I got married, lol). It was of particular concern to me because, while I've dealt with the anemia, GI problems, ADD symptoms, etc. my whole life so they're not a big deal to me (sounds weird I know, but I've never been "healthy", so the chronic diarrhea/constipation cycle, for example, doesn't bug me - it's just life), dh and I have been struggling for 4 years with ttc and unexplained infertility. We both check out all good, we even tried fertility drugs, but no go.

Anyway, blood work came back that I was BRUTALLY anemic (again *sigh*) AND positive blood test for celiac.

I was actually really excited about that, because it means there's something I can DO about my health, and maybe even getting pregnant!

Bad news? Doc insists I don't go gluten-free until after my biopsy, as it will muck up the results (and the diagnosis) if I go gluten-free ahead of time.

Well of course the specialist he referred me to was off on holidays for a few weeks. But, today I got my appointment booked! It's actually on remembrance day - they're open on the holiday because they're so backlogged with patients. It's just a consult and THEN they'll book the scope/biopsy. But still, it means soon I can go gluten-free and start taking charge of my health!

Don't go gluten-free yet, because you will need that diagnosis. In Canada you can save your receipts and get some money back on your taxes! I'm not skinny mini either and I had problems getting pregnant. Now you will need everyone in your family tested even if they have no symptoms. I'm having my daughter tested and found out that the Calgary Children's Hospital did some research and 1 out of 58 kids is Celiac. Their test pool was of a 1000 children.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. I know it will be hard to wait to get the biopsy but you do have to stay on the nasty stuff until that is done. You can make the day before the biopsy your last 'glutened' day. Do start the diet as soon as the biopsy is done, you don't have to wait for the results. Chances are you will be feeling much better by the time you go for your return visit to get the results. Biopsies and blood both have high rates of false negatives but not false positives so even if the biopsy results do by some chance come back negative stick with the diet.

chilligirl Apprentice
chilligirl
Posted
  • Author

no worries, I'm not going gluten-free until after the biopsy - my doc told me not to as it will muck up the results. I'm just eager to get "officially" diagnosed and get started on getting healthy :)

That's good to know I can write off some of the stuff on taxes!

I've got no bio-kids yet (one adopted son though, who has autism), so nobody here to test for celiac. However, I'm urging my parents, siblings, grandmother, and my one cousin who also has symptoms to get tested.

Has anyone ever heard of having a positive blood test and then a negative biopsy? I read somewhere that while false negatives on the blood test are common, false positives are not, and that a positive means there's a 97% likelihood of actually having celiac disease.

Also, what to expect from the scope? I've read that sometimes they just do a local anesthetic on your throat and you're fully aware, right through to full sedation for it. I have to admit, I'm a bit nervous about the procedure - the idea of having my intestine sampled/biopsied while I'm awake freaks me out - I think it will hurt.

nu-to-no-glu Apprentice
nu-to-no-glu
Posted

I don't have the links available, but I've seen a little research that indicates people with ADD could benefit from a gluten free diet. My husband has ADD, and although he's not 100 percent gluten free like I am, we've discussed him giving it a real try to see if it helps :) May be another incentive to stick with it as soon as you have you appointment, and like Raven said, the chance you have a false negative. I'm excited for you to feel better soon :)

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    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

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