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Need Help With Tests Results Please


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126 replies to this topic

#46 GottaSki

 
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Posted 09 March 2013 - 07:53 AM

You do not sound like a mess to me - you sound like a Celiac ready to take on her new healthier world ... keep it up :)
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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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#47 eers03

 
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Posted 10 March 2013 - 04:35 PM

I have been absent IGA all of my life.  The physicians used my anti-gliadin IGG as the metric to diagnose with.  My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis.  It is highly possible that you have celiac disease.


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Diagnosis 11/2012

#48 igadeficient

 
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Posted 10 March 2013 - 05:22 PM

I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office :P. Please do keep us updated with how the diet is going! And of course when you receive your results. All the best :)
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#49 powerofpositivethinking

 
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Posted 13 March 2013 - 03:16 AM

You do not sound like a mess to me - you sound like a Celiac ready to take on her new healthier world ... keep it up :)

 

 

I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office :P. Please do keep us updated with how the diet is going! And of course when you receive your results. All the best :)

Thanks for the encouraging words!!  At this point, I'm waking up with a full 8 hours of sleep but feel exhausted.  Only been gluten-free since Sunday.  I think it's a combo of daylight savings time and gluten withdraw  :)

 

I have been absent IGA all of my life.  The physicians used my anti-gliadin IGG as the metric to diagnose with.  My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis.  It is highly possible that you have celiac disease.

eers03,

 

When you say IGA absent, does that mean you're IGA deficient?  When you had the procedure done, did the doctor say visually everything looked fine, but then the biopsies showed damage?  I am not IGA deficient, and my doctor said visually everything looked pretty good.  Thanks!

 

 

 

 

I found this an interesting read regarding mild enteropathy called Mild Enteropathy Celiac Disease: A Wolf in Sheep's Clothing?

 

http://www.cghjourna...1307-9/fulltext


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#50 1desperateladysaved

 
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Posted 13 March 2013 - 06:24 AM

I enjoyed this this thread.  I am so glad that Positive was given what  she needed to take in to the doctors.  It struck me that the tests may only have been asked for because Positive had been here reading.  The diagnosis happened because people here helped.  It is really too bad that we have to fight doctors to get tested, but good we have a place to go for support!

 

Positive, you put in alot of work to type all of the information in.  Sometimes I want help like in this thread, but typing everything is a deterrent to me.  I like to type, but it takes time.  I am glad you were able to get help.

 

Sorry, Positive if you are a he.  I just went with my best guess.


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#51 powerofpositivethinking

 
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Posted 13 March 2013 - 03:17 PM

I enjoyed this this thread.  I am so glad that Positive was given what  she needed to take in to the doctors.  It struck me that the tests may only have been asked for because Positive had been here reading.  The diagnosis happened because people here helped.  It is really too bad that we have to fight doctors to get tested, but good we have a place to go for support!

 

Positive, you put in alot of work to type all of the information in.  Sometimes I want help like in this thread, but typing everything is a deterrent to me.  I like to type, but it takes time.  I am glad you were able to get help.

 

Sorry, Positive if you are a he.  I just went with my best guess.

 

it has taken a long time to type everything up.  Especially trying to line-up things correctly from the lab reports since copy and paste kept distorting the line-up  :blink: , but other forum member's responses have helped me ask my doctors the right questions, so if posting everything will help someone else ask their doctors the right questions, it's all worth it  :)  this forum is an invaluable resource for me and so helpful!!  GottaSki has been incredibly helpful!  

 

I absolutely agree that I wouldn't have even been tested if I hadn't suggested it, but thankfully my GI entertained my request, and now here I am!  btw, your guess was correct. I am a 27 y/o female  :)


  • 1

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#52 GottaSki

 
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Posted 13 March 2013 - 05:26 PM

Happy to help - and glad you took the time to post - never know who we will end up helping. This site is the ultimate in "Pay it Forward".

I too was helped immensely during the days following diagnosis and am ever grateful to those who took the time to answer my questions.
  • 0

-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 :)


#53 eers03

 
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Posted 15 March 2013 - 07:27 PM

Hey there, way to stay on top of things!  I initially misread your lab values.  I am absent IGA but you obviously are not so nevermind!  Good luck with things...


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Diagnosis 11/2012

#54 powerofpositivethinking

 
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Posted 28 March 2013 - 02:31 AM

so I went for my 6 month dental cleaning yesterday, I did call ahead and ask they check that the paste they used was gluten free and it was, but after that visit now I have a good idea what may have caused the high neutrophil count from my CBC.  last year I had a cavity filled, and developed intense tooth, jaw and ear pain over the course of a month...I really need to go to the doctor when I think something is wrong instead of waiting so long :(   Went back in on a Friday and they filed it down, thinking that maybe my bite wasn't lining up.  By Monday, I was still in pain, so I went back and they thought I had developed an allergy to the filling material even though I had received that type of filling before, so a sedative filling was put in.  I've always gotten while composite fillings never silver.  A month later they left a thin layer of the sedative filling in, and put the composite filling on top. The pain was gone, but it has always been a little swollen.

 

Yesterday, I had my cleaning and said it was still a little swollen plus a little bubble developed on my gum.  I have noticed that eating certain foods such as gluten and acidic foods caused it to swell more, and the swelling had decreased since going gluten free.  It was the appointment where I got my yearly x-rays, and thankfully no cavities, but the x-ray taken on the bubble showed that I am the lucky winner of getting a root canal  :P It will be my first, and hopefully only one!  My regular dentist was not there yesterday, but another one from the practice said that I have an abnormality in that my pulp horn (had to look that up :rolleyes:)  extends further up than normal and was probably irritated when the initial filling was placed.  Out of his ten years in practice, he has only seen that happen once.  lucky me, though I'd rather win the lottery  :)

 

Not to brag, but I'm always told my home care is great and my teeth are always so clean, but those x-rays get me  :lol:  

 

In my research, I've found that levels of high neutrophils indicate inflammation and bacterial infection.  I am happy that I will be getting the root canal taken care of next week, and although my dentist has been great, I'm hoping it's a one and done type of trip.  It's not painful, but just a little swollen.  The technician said the bubble developed to try and release the bacteria.  I did ask, if possible, to avoid antibiotics since I've been taking my probiotics and D/K supplements, in the hopes that my intestines will start producing more K on their own.  I don't want to throw my body off balance any more if possible  :)


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#55 igadeficient

 
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Posted 01 April 2013 - 10:18 AM

Hey powerofpositivethinking, just wondering if you had any news on your results yet? How's the gluten free living going? (:
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#56 powerofpositivethinking

 
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Posted 03 April 2013 - 05:44 AM

I called the doctor's office yesterday, and they returned my call this morning.  I specifically asked about what my biopsies showed on the Marsh rating scale, but she couldn't give me the information over the phone without my doctor's approval.  His wife is having/had a baby, so that is why I couldn't make my follow-up appointment for this week.  I did ask however that a note be written on my chart that said I'd be given a copy of the results at my appointment, and she said absolutely.  I might have been pushier, but I know he's not there this week, and the results aren't going to change how I'm eating.  Only a little bit longer wait...

 

I do feel better, and have been going regularly almost every morning  ;)  I can pull my abdomen in the whole way...finally!!!!!!!  I made a separate post on this, but nuts do not seem to agree with me right now, and I realized coconut flakes don't either.  I wanted something sweet on Easter, but since I was visiting my family, the only gluten free dessert thing I could find was coconut flakes from a bag.  My stool looks like dotted Easter eggs when I eat either nuts or coconut flakes.  It doesn't seem to matter how much I grind them, they don't digest...not even a little.  My body was doing that with spinach and romaine lettuce, but thankfully not anymore since going gluten free!!  Coconut water doesn't seem to bother me thankfully, since I've been drinking that for potassium.  

 

I attempted to run for the first time yesterday in awhile, and I'm feeling it today.  Back pain, hip and leg pain.  I am only using tylenol since I am not supposed to be taking NSAIDs because of the GERD.  I used to be able to do Jillian Michaels' workouts with no problem  :mellow:  I am on spring break right now, so what better way to spend it than getting a root canal later this afternoon  :P  I'm thinking positively that it will be completed, and I'll recover quickly!  happy thoughts  :)

Hey powerofpositivethinking, just wondering if you had any news on your results yet? How's the gluten free living going? (:

 

how is your referral process going?  any answers yet?

Ah well in waiting for your result too as we share done symptoms. I'm glad all went well though! Can I ask why your follow up is so far off? Does it take a month to check the biopsies? I thought it was about a week?

Hope you're feeling better gluten free now too! Can't wait to try it myself once my referral is over! Lol


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#57 powerofpositivethinking

 
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Posted 04 April 2013 - 03:12 AM

My regular dentist was not there yesterday, but another one from the practice said that I have an abnormality in that my pulp horn (had to look that up :rolleyes:)  extends further up than normal and was probably irritated when the initial filling was placed.  Out of his ten years in practice, he has only seen that happen once.  lucky me, though I'd rather win the lottery  :)

my dentist did not agree with the other's idea about the high pulp horn and thinks that I truly had an allergic reaction to the first composite filling.  got my root canal done yesterday, and it wasn't as bad as I thought it was going to be...not saying that I want to get another one...ever :P  I'm going back for a crown in a few weeks, and he will be using a material with no silver/nickel in it since I get a rash from those metals.  as nice as my dentist is, I don't want to be visiting him this much  ;)


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#58 1desperateladysaved

 
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Posted 04 April 2013 - 04:12 AM

My blood pressure tends to be high at the beginning of my appointment.  At the end of my appointment it use to fall into the normal category.  But it always tends to be lower at home.

 

All of my years of being undiagnosed, I really couldn't grasp my symptoms well enough to report them.  "I get really tired at times.' just didn't define it well.  It is hard for me to look to doctors for help.  I use them now for tests and information.  When they hand out prescriptions, I run off to see what could be the root of the problem.


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#59 powerofpositivethinking

 
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Posted 10 April 2013 - 12:25 PM

so I ended up calling the GI doctor back this week before my follow-up tomorrow, and I was told my Marsh scale rating is a 0  <_<  i know i should be happy about that, but I was really hoping they'd say 1 or 2, I'd be able to call it early celiac and go from there.  I felt like I was finally getting somewhere, and now I just have more questions.  would I be classified as having latent celiac?  why do I have a low Vitamin K level?

 

 

any other questions I should ask?  request a capsule endoscopy?  

 

at a loss...


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#60 powerofpositivethinking

 
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Posted 11 April 2013 - 12:39 PM

I had my follow-up today, and I just finished reading the biopsy write-up.  Although I am still pretty bummed I don't have a clear-cut answer, I am happy I've gotten somewhere, and I am thankful everything seems to look thorough and that my EGD time wasn't wasted.

 

I had an esophagus inlet patch 3mm in size in proximal esophagus, medium sized hiatus hernia visible in the stomach, a small nodule found in the antrum, and it lists that 8 biopsies were taken from the duodenum.

 

The biopsies from the duodenum are listed as: "Duodenal Mucosa with no pathologic change; no evidence of celiac disease identified."  I was also tested for H. Pylori, which can back negative.   

 

I showed the GI doctor this link http://www.curecelia...eturn-to-normal  and he did agree the raised number was cause for concern.

 

I have the label gluten intolerant.  He told me to stop the Vitamin K but continue with Vitamin D, and I have an order to have a Vitamin D, K and another celiac disease comprehensive panel run in June.  I'm guessing if the antibodies fall, that would be another indication I was on my way to developing full blown celiac.

 

Part of the reason I wanted the celiac diagnosis was so my Mom would get tested because I think she has a problem with gluten, but I am not willing to knowingly damage my body just so she will be convinced to go get herself tested.  

 

I still think if it was only gluten intolerance, I wouldn't have had any raised antibodies, and it frustrates me that your body has to be so damaged for doctors to give you the celiac label.  Hopefully ongoing research will develop a middle ground sometime in the near future.

 

My plan is to continue eating gluten-free, and see how it goes, get back to exercising more frequently while dropping weight and getting back to enjoying life! 


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 





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