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Newbie With Questions.


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21 replies to this topic

#16 GFinDC

 
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Posted 01 March 2013 - 10:16 AM

Hi SWW,

 

That's a bummer that they aren't getting you in fast.  My appointment with a celiac specialist took 4 months here.  I never did the endoscopy since I went ahead an started the gluten-free diet while I was waiting.  I was working at the time and being sick and not able to sleep was not good for work.

 

I do have a couple more suggestions, but I don't know how much they will help.  While you are waiting for the endoscopy you don''t need to eat a whole lot of gluten.  Usually they say a couple slices of wheat toast will do it.  Marshmallow root and okra are both muscillagenous and may help soothe the gut a bit.  Some alcohol before bed can take the edge off the pain and may help you sleep.  Melatonin can help with sleep too.

 

I used to lay on my right side for 15 minutes and then my left side for 15 minutes and so on to help get things moving in the guts.  Or do bends or stretches.  Whatever works for you is worth trying.  There is also Enterolab stool testing.  It is somewhat controversial but may be an option worth considering.  A capsule endoscopy is another way to go.  But they can only take pictures with them, not get biopsy samples.

 

Hang in there and I hope the doctors get back to you soon.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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#17 strongwilledwoman

 
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Posted 02 March 2013 - 01:06 PM

Just a quick update.  I am seeing two GI specialists on Tuesday morning.  I had to really complain a lot to get this appt.  My husband ended up calling the primary doctors office as well and that made them finally call me back.  I told them they were sending me to the same GI doctor who had dropped the ball a year and a half ago and I would not see him again.  By the end of yesterday, they called and had this new appt set.  Just wish it could have been easier to get this done.  I will keep you posted on what happens Tuesday.

Thank you again for all your support.


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#18 strongwilledwoman

 
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Posted 06 March 2013 - 05:52 PM

Hi All,  Just a quick update regarding my appointment that I had yesterday.  The doctors were awesome!  They wanted to schedule my Endoscopy for Friday morning but I have to be off a few of my meds for 5 - 7 days before they can do it.  So they scheduled me for 9:00 AM next Monday.  They were so nice and really wanted to do this asap, as they knew I was supposed to have been tested a year and a half ago with the last GI doctor. (the funny thing was, as I was on my way home from this appt. the old GI doctors office called and said they received paperwork on me from my primary doctors office, I told them that the paperwork had been faxed over a week ago and to forget it, I was going somewhere else).  

I did ask the new GI doctors how many biopsies they would take as was suggested and they said 6.  I was really happy with that as that was one of the things I learned on this board.   I am excited to get this over with and get some results, whatever they may be.   Thank you all again and I will post again after Monday.


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#19 GFinDC

 
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Posted 07 March 2013 - 10:06 AM

Hi All,  Just a quick update regarding my appointment that I had yesterday.  The doctors were awesome!  They wanted to schedule my Endoscopy for Friday morning but I have to be off a few of my meds for 5 - 7 days before they can do it.  So they scheduled me for 9:00 AM next Monday.  They were so nice and really wanted to do this asap, as they knew I was supposed to have been tested a year and a half ago with the last GI doctor. (the funny thing was, as I was on my way home from this appt. the old GI doctors office called and said they received paperwork on me from my primary doctors office, I told them that the paperwork had been faxed over a week ago and to forget it, I was going somewhere else).  

I did ask the new GI doctors how many biopsies they would take as was suggested and they said 6.  I was really happy with that as that was one of the things I learned on this board.   I am excited to get this over with and get some results, whatever they may be.   Thank you all again and I will post again after Monday.

 

Sounds great SWW!  That's wonderful that the new GI can get you in so quick.   The test results may take awhile to get back, like 10 days or so.  Here an article about non-celiac wheat sensitivity to read while you are waiting.  This is another possibility even if celiac testing is negative.  Unfortunately they don't know a lot about it yet or what all the effects are over time, but they do know it can cause similar symptoms.

 

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 strongwilledwoman

 
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Posted 08 March 2013 - 07:48 AM

Sounds great SWW!  That's wonderful that the new GI can get you in so quick.   The test results may take awhile to get back, like 10 days or so.  Here an article about non-celiac wheat sensitivity to read while you are waiting.  This is another possibility even if celiac testing is negative.  Unfortunately they don't know a lot about it yet or what all the effects are over time, but they do know it can cause similar symptoms.

 

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

Hi GFinDC,   What a great article.  It was very informative and well written.  Also, thank you for letting me know that the results take a while to come back, that was a question I forgot to ask.  In the meantime, would you suggest that I go on a gluten free diet after the testing or is there any further testing that would need to be done that would require me to keep eating gluten?  THank you again for sharing your knowledge with me.  I really appreciate it.


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#21 GFinDC

 
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Posted 08 March 2013 - 12:10 PM

Hi SWW,

 

It should be ok to start the gluten-free diet after the endoscopy.  We did have a poster once who said the lab lost her test results and she had to go back on gluten for a new test.  But that is very unusual.  Other tests they should do are vitamin and mineral levels.   A bone density test might be a good idea too.  But the first treatment for a low bone density should be the gluten-free diet. People with celiac disease tend to develop low bone density, probably due to mal-absorption of minerals and important stuff like that.  But you wouldn't need to be eating gluten for those tests.  So, yes, go gluten-free after the endoscopy is my thinking.  If you do have a gluten reaction, it may take a while for the symptoms to start going away.  Some people actually report worse symptoms after going gluten-free, at least for a while.  Our bodies go through a healing process after stopping gluten, and the symbiotic bacterial flora change in out guts when we change their diet also.  So there is good reason to start taking some pro-biotics.  I put together a list of tips for people to try and help them get started on gluten-free below.  I'm glad to try and help. May the Lord keep you and bless you, in Jesus name. :)

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#22 strongwilledwoman

 
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Posted 11 March 2013 - 12:39 PM

Hi All,  Well, the Endoscopy this morning went fine. Feeling good.  I was told to call back in a week to 10 days for results.  Until then I am to follow a gluten free eating plan.  I am in the process of figuring that out.  LOL.  Looks like it is not an easy thing to figure out.  I did print out some information from this site and am going to try and do my best.  I will let you know when I get the results back.  I would never have even the slightest understanding of Celiacs without all your help.  Thank you again.


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