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It's Only 9:30...and I've Already Run To The Bathroom 3 Times!

luvrdeo

By luvrdeo
in Coping with Celiac Disease

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luvrdeo Apprentice
luvrdeo
Posted
  • Author

I feel for you. I was glutened August 19--and just starting to feel better now.

Hope you feel better soon. And yes, I would dump the dairy for a while to see if it helps. Best wishes!

Goodness it has taken that long to feel better?! I guess it isn't out of the norm for me to be feeling horrible today then is it! Shoot.

Dumped the dairy...I think I've overdone it the last few days though, I'm struggling! <_<

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IrishHeart Veteran
IrishHeart
Posted

Goodness it has taken that long to feel better?! I guess it isn't out of the norm for me to be feeling horrible today then is it! Shoot.

Dumped the dairy...I think I've overdone it the last few days though, I'm struggling! <_<

Everyone rebounds at different rates, hon. My experience may not be the norm. I was unDxed for a long time and have a lot of damage to repair.

I know it is difficult at first. It's an up and down road, unfortunately. Hang in there and drink water and stick to foods that are plain and simple.

luvrdeo Apprentice
luvrdeo
Posted
  • Author

Everyone rebounds at different rates, hon. My experience may not be the norm. I was unDxed for a long time and have a lot of damage to repair.

I know it is difficult at first. It's an up and down road, unfortunately. Hang in there and drink water and stick to foods that are plain and simple.

I have gone unDxed for a long time as well, which is what I'm blaming for everything right now :) Thanks for the encouragement!! Much needed today!

IrishHeart Veteran
IrishHeart
Posted

I have gone unDxed for a long time as well, which is what I'm blaming for everything right now :) Thanks for the encouragement!! Much needed today!

((hug)) I can honestly say..."I get it".

You're going to be okay, hon...hang tough.

mommyto2kids Collaborator
mommyto2kids
Posted

I learned I can't eat any steak, but I can eat hamberger. I've tried it about 5 times. Everytime I eat the roat or tritip I get sick. But I can eat ground up hamberger. There may be something you can no longer tolerate and it takes time to figure it out. I am still clueless about several things. For me, I try to eat plain everything. I Stick to one kind of bread and eat plain meat, a starch, plain and a vegetable plain. I am ok that way. Simple plain eating is the way to go. Stay away from processed food since you are new to the diet. The frustrating thing is you may still get sick from the gluten-free food because there is something else in there that you can't tolerate, so frustrating. So try those foods on the weekend if you are brave. Hope you are better soon.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possibly way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

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    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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