5 replies to this topic

[Wowza]

Hello All,

I'm new here... Just signed up this morning. I've been using your comments and advice to help me over the past few months.

Here's my gluten/gluten free history; (26 year old female, btw)
I've been sick for the better part of a year. At first only mildly, and in those sneaky ways. The fatigue, moody, depressed, "I just need to suck it up" kinda way. And the stomach trouble too, but I've been prone to anxiety related stomach aches, etc. all my life. 3.5 months ago, after many trips to the doctor, internet searches and talking to my mom (for someone not employed in the medical field she sure knows a lot about a lot) I slowly pieced things together. I figured gluten intolerance may be the case, my SIL is gluten intolerant and had a lot of the same symptoms and I figured that going gluten-free would be worth a shot. I was getting worse by the day at this point and started to feel the positive effects of being gluten free right away. With a family member who has gone gluten-free already, and a couple of family friends who have Celiac disease I was aware of a lot of things to avoid, but WOW, I had no idea how hard it would be. Each mistake I make seems to make me more sick than the last. Has anyone else experienced this... becoming more sensitive to gluten after trying to go gluten-free?

Here's where I get to the main question: At my most recent visit to the doc she said she is referring my for gastroscopy. With the nature of gluten related or other GI problems I figured endoscopy would be the way to go. Is gastro sometimes the first step before endo because it can be less invasive?

Also, (sorry about the novel length 'question,') how do you all deal with the guilt of missing work? I know that logically it's simple: If you feel crappy and in pain, don't go to work. But then there's the fact that it's my mistake that I didn't read that ONE ingredient for Saturday night's supper. There seems to be a grey area in my head with a constant reel that says, 'I'm not contagious, maybe I should just tough it out, I can work in pain, maybe I'm just being a wimp.' I'm left with go to work and feel like crap, don't go to work, stay in the comfort of my bed while feeling like crap, but feel guilty too. (I really hope this does't sound like a pity party - but I suppose you guys would be the ones who really know how the up and down emotional aspect of all this really feels.)

Last, but definitely not least, I'd just like to say that my boyfriend has been amazing and supportive through helping me figure things out, to making me lemon and sugar water (helps with the cramping) to trying to ease my guilt when I miss work, to handling my moodiness like a champ and not holding it against me. If you're lucky enough to have support like that, don't take it for granted.

Thanks for reading!

[kareng]

Sometimes the word gastroscopy is used to mean endo (correctly or not). Make sure you have an appointment with the GI before the procedure and make sure you are getting biopsies of the intestine. The GI should be the one to decide what you need. Have you had the blood tests for Celiac? Why not do those first ? Your regular doc can order those. Remember, if you are gluten free, you will not be making the antibodies that show up in the tests and you may have started healing the intestine (making it hard to get a damaged spot on biopsy).

[Wowza]

Thanks for the quick reply, kareng. I confirmed with the doc that she meant start from the top and go down, not the other way around with the scope. Good adice about a consult with the GI. I had blood work before going gluten free ( I had been gluten free for a day and a half before this doc appt, went back on and had blood work a day and a half later,) and it was negative. That didn't surprise me because I've heard blood work often is. I went gluten-free again right after that because I noticed a BIG difference in just a day and a half.

You also answered another one of my questions. Doc wants me to go back on gluten for 2-3 weeks before the scope - good to double check this with the GI I imagine, but sounds like I'm going to have to. Need to figure out if I can go on some sort of medical leave at work I suppose.

[kareng]

Its possible you don't have Celiac. You could have NCGI (non-Celiac gluten intolerance). It can be every bit as nasty as Celiac but won't show on antibody tests or biopsy. You still might want to have the endo, just to make sure you don't have an ulcer or something else.

Do you have a copy of your blood tests? You might want to post them here so we can see if you even got the right ones. Sometimes these docs haven't even ordered the Celiac panel.

[Wowza]

I figured I was the non-celiac variety, could have mentioned that off the start... Definitely going to have the scope. I don't have my results, the lab sheet just Celiac screening, nothing more specific.

[mushroom]

The doctor who ordered the tests must have the results - they need to be more specific than just 'negative'.