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Waiting For Final Results

Cat84

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Cat84 Newbie
Cat84
Posted

Hi,

So I have always problems with bloating etc and had bouts of constipation and then everything going straight through me. Over the past 2 years or so when I had blood tests and was always low in iron or folic acid but didn’t really think anything of it and just took tablets to bring my levels back up. Then a couple of months ago I was almost ‘caught short’ going to work and went to doctor as I  didn’t want a situation where I couldn’t get to the toilet on time and the urgency I would have was getting worse. The doctor did further blood (low in folic acid again) but my celiac test came back negative but he still referred me to the hospital. Was surprised as thought it would be a case of IBS (it could still be) and thought he would send me away to keep a food diary.

 

So went to the GI consultant and spoke about my symptoms (including sore red patches on my tongue) and although my bloods came back no to celiac he booked me in for and gastro endoscope and biopsy.  Again surprised as know friends that have had to fight for this but happy that it would come back clear and I could go on with my life knowing that I just have to be careful about not eating masses about of wheat etc. When they took the biopsy (4 in total) they said my bowel looked really flat and not real folds at all. After when we spoke about what she said though the procedure (including a very sensitive gag reflex!) she said that it was really flat in bowel. She said not to worry as she has seen it like mine that have come back fine and ones that look fine come back as a positive result.

 

Now I am worried, at no point did I think that I would have celiac until now.  All I see it as is a massive change in lifestyle that I do not want to make. Part of me thinks that I am over reacting and that what will be will be but another part of me wants to be as ready as possible in case it comes back as a positive result. Guidance and help would be gratefully received.

 

 

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kareng Grand Master
kareng
Posted

Sounds like you were diagnosed with celiac disease by endoscopy? Or about to be? Here is a good place to start

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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      Question

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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