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Am I Likely To Be Dx-Ed? Please Help!


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#16 nvsmom

 
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Posted 26 January 2014 - 04:33 PM

This is an interesting report that you might want to read, or even print off and bring to your appointment. Pages 8-12 discuss endoscopy and blood tests:

http://www.worldgast..._long_FINAL.pdf

 

You sound a lot like me when I was first diagnosed: scared and mad. You'll be okay. Celiac disease is one of the easier autoimmune diseases to treat. No medications required like Addison's, hashimoto's, or diabetes. It's just alteration to your diet. At home, that's easy to do. All you need to do is switch brands. Use rice noodles and gluten-free bread instead of the usual wheat variety. Use gluten-free boullion cubes as well as gluten-free soy sauce and worchestershire. Get rid of gluteny spices. It really is just a brand switch at home, it's eating away from home that is a bit trickier but still very doable... You'll be okay.

 

If cancer is a large fear, going gluten-free might point your eating in a direction that makes cancer less likely. Cancer LOVES carbs and sugars. That's all it gets energy from.  If you reduce your carbs and sugar intake, you'll make it very difficult for cancer to get going, if not impossible.

 

Hang in there, and let us know how the appointment goes. Good luck.  :)


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#17 Justscared

 
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Posted 26 January 2014 - 06:42 PM

Do you happen to know how common is refractory celiac?


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#18 GottaSki

 
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Posted 26 January 2014 - 07:10 PM

Do you happen to know how common is refractory celiac?

 

Extremely....extremely rare.

 

MOST people diagnosed with Celiac Disease improve within weeks and their intestines are healed within six months.

 

Please re-read the positive comments and stop researching worst case scenarios for a disease that you have not been diagnosed with.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 Justscared

 
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Posted 26 January 2014 - 08:30 PM

Extremely....extremely rare.

 

MOST people diagnosed with Celiac Disease improve within weeks and their intestines are healed within six months.

 

Please re-read the positive comments and stop researching worst case scenarios for a disease that you have not been diagnosed with.

 

Lord Bless you, Lisa, I know you are right and I will not try to excuse the mindset I have in any way.

But I am basically an undiagnosed hypochondriac, I would say severe - and it is extremely hard for me to switch my brain to focus on the positive likelihoods. My brain always reverts to worst case scenarios and desperately wants to weed them out with 100% guarantee; otherwise the anxiety, the panic attacks, the terrible fear literally get into my blood until everything is cleared.

 

I know I need psychiatric help as I have been through health scares before...but this time, I feel like I am probably out of luck. 

 

I still hang onto the scenario where what the dr. saw as "atrophic duodenum" during the endoscopy did not in fact translate into "villous atrophy" at the lab. The letter they sent at home allows me to hope for that somehow, but if he reserved telling me all about Celiac when he sees me tomorrow for follow up, then this hope means nothing. 

 

Yes, I will post tomorrow with an update.

 

Thank you so much for having patience with me.


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#20 GottaSki

 
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Posted 26 January 2014 - 08:52 PM

You are welcome.

 

Do try to get some rest.

 

For now close your eyes...breathe in through your nose and out through your mouth...then repeat....and again.

 

And do speak to your primary care and the GI about your high level of anxiety.

 

Lastly as someone else mentioned removing gluten can help anxiety...so regardless of results it would be a good idea to remove gluten for a three-six month period as this is the only way to determine Non-Celiac Gluten Sensitivity which has many of the same symptoms as Celiac.

 

Hang in there  :)

 

Edited to add:  do not remove gluten until you are certain Celiac testing is complete.


Edited by GottaSki, 26 January 2014 - 09:18 PM.

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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#21 kareng

 
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Posted 27 January 2014 - 05:20 AM

Do you happen to know how common is refractory celiac?

At least that is one you don't have to worry about! You know you don't have that. You had a clear endo after being gluten-free. At least that's what it sounded like you were saying?

Get the actual copy of your reports - lab and pathology and go from there.
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#22 Justscared

 
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Posted 27 January 2014 - 08:01 AM

At least that is one you don't have to worry about! You know you don't have that. You had a clear endo after being gluten-free. At least that's what it sounded like you were saying?

Get the actual copy of your reports - lab and pathology and go from there.

 

kareng,

 

In fact, no - this is not the case.

 

I have never been gluten-free, definitely not for more than a few days.

Actually I have been very much gluten-dependent my entire life. I LOVE bread and feel completely hungry if I don't have it on the side with whatever other foods I am eating; and I have had periods in my life when I literally drowned myself in gluten (fresh bread, croissants, muffins, you name it).

 

I had heard about the gluten issue before and have read casually a few things about Celiac, but not having any of the classic symptoms (diahreea, anemia, etc) I didn't bother to look any deeper.

 

When my GI first mentioned the possibility of "gluten allergy"or other food allergies to explain my reflux, I went gluten free for a few days, less than a week - but then I went back on gluten as soon as I read on this forum that I may need further testing.

 

When I had the endo and the biopsy I was on gluten.

 

As for the "endo being clear" - this is what is not clear to me at this point and this is what I need to clarify today when I see the GI (3 more hours of wait).

Like I said, dr's. notes right after endoscopy said "duodenum: atrophic", but he also said everything looked much better than he expected, including the reflux part, etc.

 

A few days after the endo, I received a letter at home with the biopsy results, and the only thing mentioned was "reflux esophagitis" and "set up a follow up appt in a week".  Nothing about "villous atrophy", nothing about Celiac.

Then again, this was not the lab report itself, only  a letter from the dr's office.

 

So I am not sure this qualifies as "endo clear".

Unless the dr. thought he saw "atrophic duodenum" during endo but the lab failed to find any atrophied villi, despite what the dr saw.

 

Of course, the biopsy did reveal reflux esophagitis - but that's something else.

 

I read about another case on this forum where the dr wrote "atrophic duodenum" right after endoscopy but the biopsy came normal.

 

So, so weird.


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#23 NoGlutenCooties

 
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Posted 27 January 2014 - 09:33 AM

Just wanted to add one thing... and this is just my own opinion/viewpoint - I don't have any "medical evidence" of this... but my suspicion is that a major reason for Celiac people to still have a lower-than-normal life expectancy is because they actually eat worse after their diagnosis than they did before they were diagnosed.  "Gluten-free" does not automatically mean healthy.  Many "gluten-free" substitutes for gluten food have a laundry list of additives and crap in them that would make anyone sick over time if they ate a lot of them.  I looked at the Betty Crocker gluten-free brownie mix and the first ingredient is sugar.  Which means there is more sugar in them than flour!!  In my opinion, if you eat 100% gluten-free AND eat healthy (i.e. whole food, plenty of veggies, minimal sugary crap, minimal processed crap) there is no reason whatsoever why the life expectency of a person with Celiac cannot be the same or better than the average person in the rest of the population (other genetics, etc. being equal).


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#24 Justscared

 
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Posted 27 January 2014 - 01:42 PM

It makes sense. I just never thought that people would continue to rely on processed foods after such a diagnosis. A gl,ute-free boxed prodict may be gljuten-free but it's still a processed thing. The point is to increase your intake of whole foods cooked from scratch.

You would think that this would be a wake-up call that would put people in the kitchen, constantly peeling whole vegetables and cutting pieces of fresh meats, etc (yes, very time consuming indeed - which clashes with the huge pace of life of modern society).

But if you have a more serious condition, you would think cooking whole foods would get very high on the priority list.

 

 

The fact that many people just want to get their food from a box is perhaps part of the western way of living.

 

 

Just wanted to add one thing... and this is just my own opinion/viewpoint - I don't have any "medical evidence" of this... but my suspicion is that a major reason for Celiac people to still have a lower-than-normal life expectancy is because they actually eat worse after their diagnosis than they did before they were diagnosed.  "Gluten-free" does not automatically mean healthy.  Many "gluten-free" substitutes for gluten food have a laundry list of additives and crap in them that would make anyone sick over time if they ate a lot of them.  I looked at the Betty Crocker gluten-free brownie mix and the first ingredient is sugar.  Which means there is more sugar in them than flour!!  In my opinion, if you eat 100% gluten-free AND eat healthy (i.e. whole food, plenty of veggies, minimal sugary crap, minimal processed crap) there is no reason whatsoever why the life expectency of a person with Celiac cannot be the same or better than the average person in the rest of the population (other genetics, etc. being equal).

 


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#25 Justscared

 
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Posted 27 January 2014 - 01:58 PM

UPDATE, BACK FROM GI.

 

Biopsy results indicate no celiac sprue or infectious microorganisms. Just grade A esophagitis in the lower part of the esophagus from a little reflux.

 

Apparently though, the # of biopsies the dr. took of the small intestine was only 1.

He also took 2 other biopsies of the middle lower esophagus - I got a copy of the lab report.

 

I asked the dr why he wrote "atrophic duodenum" in the endo report (the reason why I've been freaking out for almost a week now) and he said that it was a very small portion that seemed a little different to him and he just wanted it biopsied; but the final call is the biopsy itself and according to him, that came 100% normal, with no villi flattening.

 

I asked him whether I should still do a Celiac blood panel and he said no.

 

 

What would you advise me now?

 

I want to take myself completely off gluten anyway for 30 days and see what happens.

 

Will the reflux go away? Will the muscle/bone pain all over my back disappear? Will  the occasional flair-ups of cheilitis (little sores at the corner of the mouth) vanish altogether?  Will I see other health benefits?

 

Who knows? Many people NOT diagnosed with Celiac claim miraculous changes in health after they get themselves off gluten.

 

I still sometimes worry that I could just be gluten-sensitive but without blood panels I cannot know for sure. Maybe my GP will want to do a gluten-sensitivity panel when I have the yearly check-up.

 

I guess the take-home lesson for pre-diagnosis people would be:

 

Do not assume that the "atrophic duodenum" remark your GI. writes in the endo report right after the procedure = "villous atrophy".

 

Sometimes the dr. THINKS he sees something and the lab finds all in order.

 

It CAN be very nerve wrecking though.

 

Thank you so much again for everyone's support - I remain grateful for all the information and help I received here. I did learn a lot.

I


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#26 NoGlutenCooties

 
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Posted 28 January 2014 - 06:29 PM

Non-Celiac Gluten Intolerance is still a possibility.  You could try going 100% gluten-free and then after a couple of months try eating it again to see if you react negatively to it (try a small amount to keep the reaction minimal).  If you get symptoms again, then there's your answer.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#27 Justscared

 
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Posted 28 January 2014 - 10:05 PM

Non-Celiac Gluten Intolerance is still a possibility.  You could try going 100% gluten-free and then after a couple of months try eating it again to see if you react negatively to it (try a small amount to keep the reaction minimal).  If you get symptoms again, then there's your answer.


Yes, this is what I plan on doing. Today was my first day completely gluten free.

I did ask the dr. Whether I should get some blood tests anyway and he said no. So I will just have to try it with the elimination diet.

After all, I still have some symptoms I've had for years, including muscle / bone pain all over my back, occasionally flairing cheilitis at the corners of the mouth, chronic rhinitis, anxiety, low moods, sometimes foggy brain, etc. The latter, of course, could simply be good ol stress, as I am joggling a professional career, 2 kids and their increasingly demanding school needs, all while cooking from scratch daily, etc.

Oh, well - I'm just grateful for the good test results so far.

The gluten free journey will be interesting.
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#28 GFinDC

 
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Posted 29 January 2014 - 10:02 AM

I suggest you still get the blood tests done.  If your doctor won't do them maybe another doctor will.


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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

#29 Justscared

 
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Posted 29 January 2014 - 01:31 PM

I am thinking about asking my GP when I have the yearly physical in a few months.

For now, I will stay gluten-free.


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#30 GottaSki

 
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Posted 29 January 2014 - 03:50 PM

I am thinking about asking my GP when I have the yearly physical in a few months.

For now, I will stay gluten-free.

 

You need to be ingesting gluten for any celiac antibody test.

 

Many folks become even more frustrated than you have been this past week when they remove gluten and then find out the tests are invalid.  Even a gluten challenge of 6 to 12 weeks is not as accurate as the data you would receive before initially removing gluten.  

 

I agree with Paul....try requesting the blood tests from your primary now...explain that you will be removing gluten which will invalidate testing in a few months with your annual physical.

 

Understand...if you improve gluten-free...it can be extremely difficult to reintroduce it at a later date...which may leave you in a tough spot.

 

Just trying to save you future aggravation :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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