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Michelle1906

By Michelle1906
in Coping with Celiac Disease

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Michelle1906 Newbie
Michelle1906
Posted

Hi, I'm new here but have been reading this forum for about a month. I have so many questions and I just dont know where to even start. At this point everything is just so overwhelming. I go in for an upper scope on Monday. Part of me is scared to death to have this done, then again I'm looking forward to finally getting answers to why I've been feeling like this for so long. My biggest fear tho is it coming back and everything looks normal. Its hard to get the people in your life to understand how you are feeling. I feel most of the time they think its in my head. So anyways, I'm just glad I found this support group. And if anyone, which I'm sure you've all had the upper scope could ease my mind on the procedure I'd be forever grateful!!

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BabsV Enthusiast
BabsV
Posted

Hi, I'm new here but have been reading this forum for about a month. I have so many questions and I just dont know where to even start. At this point everything is just so overwhelming. I go in for an upper scope on Monday. Part of me is scared to death to have this done, then again I'm looking forward to finally getting answers to why I've been feeling like this for so long. My biggest fear tho is it coming back and everything looks normal. Its hard to get the people in your life to understand how you are feeling. I feel most of the time they think its in my head. So anyways, I'm just glad I found this support group. And if anyone, which I'm sure you've all had the upper scope could ease my mind on the procedure I'd be forever grateful!!

Welcome! I'm relatively new here myself and I have got to say that the support and wisdom I've received from members of these forums has made my whole adjustment to living with Celiac Disease much more manageable. I too was completely overwhelmed by my diagnosis although very relieved to finally have an answer for why I felt so terrible. The whole 'it is in your head' thing seems to be common...I was even sent to a psychiatrist at one point when the other doctors couldn't find anything wrong. Psych said I was obviously stressed due to my health issues but other than that, completely fine! Don't let anyone try to dismiss how you feel or tell you you are being 'hysterical.'

As for the scope, I've had 3 done (years prior to my Celiac diagnosis I had serious GERD problems which they found were the result of a sliding hiatus hernia that had to be surgically repaired.) All 3 times I've had it done I was sedated and remember absolutely nothing of the procedure. Not sure where you are geographically but as long as you are being sedated there really isn't anything to worry about -- or at least that's my opinion. You might have a bit of a sore throat afterwards but it will fade.

Each time I've had it done (in 3 separate locations -- we get around) they've inserted an IV, then I hopped up on the table, they arranged me on my left side in the proper position, then given me a plastic mouth guard-type thing to bite down on, then they've pushed the sedation into the IV and the next thing I remember is waking up in the recovery area. I think dealing with the fuzziness from the sedation was the worst part of the whole thing. I don't deal well with sedation so was pretty out of it for most of the day.

Good luck and hope you get some answers!

Reba32 Rookie
Reba32
Posted

Yep, pretty much all the same as the above. Although I didn't have much difficulty with the sedative hangover. I got on a plane later that same day! I had a bit of a sort throat for a couple of days, but that was about it, it didn't affect my swallowing, it was just kind of scratchy.

Michelle1906 Newbie
Michelle1906
Posted
  • Author

Yep, pretty much all the same as the above. Although I didn't have much difficulty with the sedative hangover. I got on a plane later that same day! I had a bit of a sort throat for a couple of days, but that was about it, it didn't affect my swallowing, it was just kind of scratchy.

Aweosme!! Thanks, that makes me feel better.

kareng Grand Master
kareng
Posted

I think the key to these things is, don't worry about waking up completely. Go home and nap right away for a couple of hours. Sleep in the car. When you wake from the 2 hour nap, alot of the foggyness is gone. I have found this for most people, there are always a few that jump off the table and walk home or are sleepy all day.

MinnesotaCeliac Rookie
MinnesotaCeliac
Posted

Just as the others said, no worries with the scope. Pre-scope i was a little anxious. It took longer to prep than to do the procedure (at least from my standpoint as i was out once they started). I just remember i started a countdown (i maybe said three numbers and thats it) and waking up afterwards. Good luck.

Celtic Queen Explorer
Celtic Queen
Posted

I had the endoscopy, colonoscopy and biopsies all done at the same time last month. The prep for the colonscopy was way worse than any of the procedures themselves. I was not a happy camper with no food in my stomach for 48 hours. No to mention the cleansing of the colon was not fun either. I felt great after I woke up from the procedures and good some solid food in my stomach.

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kwylee Apprentice
kwylee
Posted

I'm with everyone else here, the procedure is not bad at all so don't worry about that.

And even if everything comes back negative for Celiac, that doesn't mean that gluten isn't getting to you. I'm one that always tested negative, but gluten, dairy and even soy were doing a number on me. And I'll never go back to eating it.

Let us know how it goes!

Michelle1906 Newbie
Michelle1906
Posted
  • Author

The test went well I guess...I dont remember :)!!

BUT the test came back negative...now what

I'm at my wits end

This is so dang frustrating!!!

I glutened up for my test on monday...satruday I ate bread and lots of it

Within 2 hours I was in the bathroom and felt drunk.

How can it be negative??

It feels like no one believes me

domesticactivist Collaborator
domesticactivist
Posted

Had you been eating gluten regularly (3-4 slices of bread a day) for about 3 months prior to the test? That is what is considered necessary for a reliable endoscopy.

Even though the test is negative, there are other kinds of gluten intolerance. It sucks not to have that validation from a definitive test, but you do seem to have a definitive experience!

I just read the book Healthier Without Wheat and it changed my perspective on gluten intolerance and celiac... celiac is just one symptom, and not necessarily the worst you can have. You might like to read that book.

Michelle1906 Newbie
Michelle1906
Posted
  • Author

No...I havent been eating that much.

I'll get that book this weekend and start reading it

Thank you so much!!

kwylee Apprentice
kwylee
Posted

...satruday I ate bread and lots of it. Within 2 hours I was in the bathroom and felt drunk. How can it be negative??

It feels like no one believes me

Brain fog, lightheadness and the disconcerting feeling as though I would "blip" out of consciousness at any moment were 99% of my symptoms prior to going gluten free. You don't have a credibility problem on this forum. You don't owe anyone else an explanation.

Michelle1906 Newbie
Michelle1906
Posted
  • Author

Oops, I know....

I'm talking about with my husband and friends.

I know after reading all this you guys know first hand what I'm going through

kwylee Apprentice
kwylee
Posted

No, I knew exactly what you meant. I have never gotten a positive result on a celiac test. And I've read that it's common that some have difficulty trying to explain this to friends and family in the absence of some sort of official test result (or maybe even when the results are positive). I think the biggest hurdle for some is explaining why "all of a sudden", you can't eat something you may have ingested for years. The other part of the problem for some is knowing it yourself.

I personally do not have a problem explaining that I am gluten intolerant to anyone who may be interested, but I do acknowledge that I've read many stories here that suggest it can be difficult for some friends and family members to understand, especially if they want to believe, for whatever reason, that you are not being honest about your symptoms, etc. Unfortunately, and shamefully, this can apply to doctors as well, but right now I'm talking about the people in your life who really matter. Because those people will become your support system.

So, you know what I've found? First of all, my friends and family didn't even know what Celiac disease really is to begin with. They may have heard of it, but they didn't necessarily connect it to gluten. So when I say with authority and conviction that I am gluten intolerant, it's accepted, even by doctors. I haven't had anyone challenge the notion but I wouldn't care if they did. Because it is so clear to me. I ate gluten, dairy and soy for years and as time went on, it was slowly making me sicker and sicker. Until my body got to the point where it said, ENOUGH!, and I got dizzy and tired each time I ate it. Once I tried the STRICT elimination lifestyle, I was 100% better. 100%!! But I do explain it to people by saying it affects me as peanuts would to someone who may have a severe allergy; I can't have the least little bit now that I've gotten it out of my system. But that's OK because I'm doing great and so thrilled that I found out what was making me sick for years.

Don't give up on the elimination diet simply because of a negative result. If strict avoidance makes you better, that's the result you're looking for!

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