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Need Help With Tests Results Please


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#106 powerofpositivethinking

 
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Posted 24 December 2013 - 04:00 AM

thanks, Arlene and Prickly!

 

Prickly, unfortunately I didn't ever have TPO antibodies run because since my TSH lowered my GP didn't think it was necessary <_<  I know TSH doesn't always show the whole picture, and to be honest, I really didn't argue with him on that because for that appointment I wanted to walk out of there with a prescription for 50000 ius of Vit. D, and I did get that.  Here are all the thyroid results I've had in the past:

 

The first tests were ordered by my ob/gyn during the time I wasn't getting a period:

 

April 2012

 

TSH         2.490    Ref. Range 0.450-4.50

Free T4   1.09       Ref. Range 0.82-1.77

 

 

February 2013

 

TSH         1.330      Ref. Range 0.450-4.500

Free T4    1.15        Ref. Range 0.82-1.77

Free T3     2.7         Ref. Range 2.0-4.4

 

 

I can't believe it's already Christmas Eve!!  I did all the prep work for my dishes to take to my Grandma's Christmas dinner at my place so I didn't have to worry about CC.  All I have to do on the way to my parent's house is buy two disposable pans for my sweet potato casserole and roasted brussel sprouts to bake them.  I made a chocolate peppermint pie too.  Took me four grocery stores to find the Enjoy Life chips I needed for the recipe, but I found them!  The only other food I feel safe eating is anything my one aunt makes.  She works in a health food store, and makes all the prepared food.  I've questioned her about their preparation methods, and I feel confident in their procedures.  

 

Friday is also my 28th birthday, and I can't believe I'm turning 28!  Not to sound cliche, but I'm so excited for what this year will bring since I finally feel like I'm getting things figured out!!  My Mom in the past has always made me a birthday cake, but not this year, so we'll see how that goes  ^_^  I'm meeting a good friend for coffee in the morning, which I'm really looking forward to, and when asked where I want my birthday meal I want to go to Betsy's Bakery in either Camp Hill or Harrisburg, PA.  If you're ever in that area, I highly recommend it!  It is a completely, dedicated gluten-free bakery, and Panera inspired, where you can get sandwiches as well.  The owner has celiac herself.  Here's a link if you're interested in checking it out if you're even in the area:  http://www.betsybakes4u.com/  Then in the evening I'm going out dancing with friends.  Going out was something I used to do a lot more often, but because of feeling tired and sad, I haven't been, so I can't wait for that!

 

A few other things I forgot in my other post...this summer I moved because my old roommate got a teaching job back in her home state of MD.  A life goal has been to live in a city.  I live in Delaware, and living in Philly would have been way too far of a commute, so I moved to the "big city" of Wilmington, otherwise known as credit/corporate capital of the world haha  I also decided I want to get my masters in nutrition.  Since my undergrad degree wasn't in science, I have to take quite a few pre-reqs to even apply for the grad program I'm interested in attending.  I took my first nutrition class this fall, far warning this is a bit of a brag, and I did awesome in it!  From all of my research trying to figure out what was wrong with me, I already knew a lot of the material.  

 

Moving to a city, and beginning the long journey to get my masters is something I never would have dreamed of last year at this time.  Last year I remember being so happy/nervous because after about two years of symptoms, I finally decided enough was enough and called a GI doctor's office to make an appointment for January.  

 

Are there still bad days?  Yeah, and those are usually the ones when I have the big C, but there seems to be more time between those happenings.  

 

Merry Christmas everyone!!

 

 

Okay, I tried to read the whole thread but admit skimming.

Did you ever get a thorough thyroid panel? Because the only free t3 I saw was below the mid-mark, which can indicate you do have a thyroid issue (I don't give a flying flip what your doctor said). Part of that can be cause/effect of d3. Complicated. But did you ever get antibodies and free t3/freet4 run together?

I'm glad you're feeling so much better!


  • 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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#107 GF Lover

 
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Posted 24 December 2013 - 05:15 AM

Congratulations POP.  That new found "I feel good" feeling is priceless.  It's wonderful watching all you guys heal and begin to LIVE again.  Don't worry about the Parents, only about YOU!  Everything else will come around in time.  

 

Have a great Holiday and I wish you much happiness and health.

 

Colleen


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#108 Gemini

 
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Posted 24 December 2013 - 10:39 AM

Geez!  I was getting tired from all the 28 year old energy popping off this post!  :lol:   This is the post of a recovered person. You are moving and thinking of another degree and that requires energy and stamina....which you clearly have enough of now!  Merry Christmas and Happy Birthday back at ya, enjoy all that food and good luck with your move and education, young lady!  You're doing good!  :)


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#109 nvsmom

 
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Posted 26 December 2013 - 02:18 PM

:) 2014 is going to be a great year for you now that so much is behind you!

 

Happy birthday!


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#110 pricklypear1971

 
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Posted 26 December 2013 - 02:46 PM

thanks, Arlene and Prickly!

Prickly, unfortunately I didn't ever have TPO antibodies run because since my TSH lowered my GP didn't think it was necessary <_< I know TSH doesn't always show the whole picture, and to be honest, I really didn't argue with him on that because for that appointment I wanted to walk out of there with a prescription for 50000 ius of Vit. D, and I did get that. Here are all the thyroid results I've had in the past:

The first tests were ordered by my ob/gyn during the time I wasn't getting a period:

April 2012

TSH 2.490 Ref. Range 0.450-4.50
Free T4 1.09 Ref. Range 0.82-1.77


February 2013

TSH 1.330 Ref. Range 0.450-4.500
Free T4 1.15 Ref. Range 0.82-1.77
Free T3 2.7 Ref. Range 2.0-4.4


I can't believe it's already Christmas Eve!! I did all the prep work for my dishes to take to my Grandma's Christmas dinner at my place so I didn't have to worry about CC. All I have to do on the way to my parent's house is buy two disposable pans for my sweet potato casserole and roasted brussel sprouts to bake them. I made a chocolate peppermint pie too. Took me four grocery stores to find the Enjoy Life chips I needed for the recipe, but I found them! The only other food I feel safe eating is anything my one aunt makes. She works in a health food store, and makes all the prepared food. I've questioned her about their preparation methods, and I feel confident in their procedures.

Friday is also my 28th birthday, and I can't believe I'm turning 28! Not to sound cliche, but I'm so excited for what this year will bring since I finally feel like I'm getting things figured out!! My Mom in the past has always made me a birthday cake, but not this year, so we'll see how that goes ^_^ I'm meeting a good friend for coffee in the morning, which I'm really looking forward to, and when asked where I want my birthday meal I want to go to Betsy's Bakery in either Camp Hill or Harrisburg, PA. If you're ever in that area, I highly recommend it! It is a completely, dedicated gluten-free bakery, and Panera inspired, where you can get sandwiches as well. The owner has celiac herself. Here's a link if you're interested in checking it out if you're even in the area: http://www.betsybakes4u.com/ Then in the evening I'm going out dancing with friends. Going out was something I used to do a lot more often, but because of feeling tired and sad, I haven't been, so I can't wait for that!

A few other things I forgot in my other post...this summer I moved because my old roommate got a teaching job back in her home state of MD. A life goal has been to live in a city. I live in Delaware, and living in Philly would have been way too far of a commute, so I moved to the "big city" of Wilmington, otherwise known as credit/corporate capital of the world haha I also decided I want to get my masters in nutrition. Since my undergrad degree wasn't in science, I have to take quite a few pre-reqs to even apply for the grad program I'm interested in attending. I took my first nutrition class this fall, far warning this is a bit of a brag, and I did awesome in it! From all of my research trying to figure out what was wrong with me, I already knew a lot of the material.

Moving to a city, and beginning the long journey to get my masters is something I never would have dreamed of last year at this time. Last year I remember being so happy/nervous because after about two years of symptoms, I finally decided enough was enough and called a GI doctor's office to make an appointment for January.

Are there still bad days? Yeah, and those are usually the ones when I have the big C, but there seems to be more time between those happenings.

Merry Christmas everyone!!


Your excitement makes me smile :).

The next time you go to a doctor, have full thyroid panels run - free t3, free t4, tpo (and other antibodies), and reverse t3. Your free t3 is quite a bit lower than the halfway mark, t4 is right at the half mark. These could be signs you are not converting t4 to t3 properly...which means thyroid disease. Your TSH may, quite frankly, be meaningless if you have conversion issues.

To give you an idea...mine is below 1 and I have below range t4 and close to mid range t3 right now....because I have conversion issues (among other things). Going by TSH may be the worst thing for you, diagnostically. I'm sure you understand how autoimmune disease can take a long, slow toll till it is no longer silent. Just check out your thyroid thoroughly and frequently. Please.

Getting d3 and iron up is (as they tell me) necessary for proper conversion...but once things progress to a certain point, hormonal supplementation is needed.

I'm glad life is going well, and hope it continues to do so.
  • 0
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#111 powerofpositivethinking

 
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Posted 29 December 2013 - 04:09 AM

prickly, thanks for all the info!  The next apt I have is in Feb, but that's my ob/gyn and last time I asked she said my GP should really run them.  I will try to convince my GP again when I go for my preventative exam, but first I'll make sure to find journal articles for him to validate why he should test me anyway despite my TSH :)

 

I stood firm at Christmas, and everything turned out pretty well.  I could tell my one aunt was a little sad I didn't eat any of her cookies, but oh well :)  I had a great time on my birthday!  Went to Betsy's Bakery for lunch and had birthday cupcakes this year.  Instead of going out dancing, we ended up going to a classy piano bar where I had a great time catching up with friends and enjoying some wine.  Example of how sometimes I think my Mom is coming around...my birthday gift from her and my Dad was a basket of gluten free/dairy free items, and gift cards to Giant.  For Christmas my brother bought me some gluten free Wegmans food and a gift certificate to their store.  I love Wegmans...my family thinks I have a sligh obsession :lol:  I e-mailed the company asking when they were building one in Delaware since stores are in every surrounding state but was told there were no immediate plans to build any in DE <_<

 

I feel like my family is trying, but it's two steps forward, one step back.  My brother asked me if I was going to make an exception and eat gluten during Christmas, and I probably looked at him like he had grown four heads.  When I was organizing my new makeup, I told my sister that I had bought gluten-free lipstick, and she looked at me like I was crazy.  Oh well.  I just have to keep doing what I'm doing :)

 

In order to be social, I finally feel comfortable going out for coffee, I drink it black, or going out for drinks where I get wine.  I know both are not healing foods, so I am not making a daily habit of either. 

 

I'm guessing because of Christmas, that's why my blood work results are taking longer because I still don't know my Vitamin K level.  I did get my Enterolab gene test kit in the mail yesterday, so I will be sending that off soon.  I really hope it doesn't leave me with more questions, but I need it done for my sanity anyway :P

 

thanks for all the birthday wishes!!

 

 

Your excitement makes me smile :).

The next time you go to a doctor, have full thyroid panels run - free t3, free t4, tpo (and other antibodies), and reverse t3. Your free t3 is quite a bit lower than the halfway mark, t4 is right at the half mark. These could be signs you are not converting t4 to t3 properly...which means thyroid disease. Your TSH may, quite frankly, be meaningless if you have conversion issues.

To give you an idea...mine is below 1 and I have below range t4 and close to mid range t3 right now....because I have conversion issues (among other things). Going by TSH may be the worst thing for you, diagnostically. I'm sure you understand how autoimmune disease can take a long, slow toll till it is no longer silent. Just check out your thyroid thoroughly and frequently. Please.

Getting d3 and iron up is (as they tell me) necessary for proper conversion...but once things progress to a certain point, hormonal supplementation is needed.

I'm glad life is going well, and hope it continues to do so.


  • 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  :) 


#112 powerofpositivethinking

 
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Posted 30 December 2013 - 02:06 AM

finally got my Vitamin K1 result, and it is still low but has improved slightly :)  Vitamin K1 is the only K vitamin LabCorp tests. 

 

Reference Range is 0.28-1.78

 

Feb 2013: <0.13

 

June 2013: 0.16

 

Dec 2013: 0.18

 

I supplemented as directed by my GI between the Feb and June tests.  When I asked the GI about it again in June, he said I could make an appointment with a hematologist if I wanted, which I never did.  I think my response was I'll wait a little.  I don't want to make a mountain out of a mole hill, but I keep reading about the link between Vit. K and bone health.  My GP advised against supplementation in July and said to eat more Vit. K rich foods.  My multi has vitamin K which says it provides 94% of your daily value.

 

Should I make an appointment with a hematologist, or wait a bit longer?  My level is still quite a bit below normal, but it is improving.


  • 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  :) 


#113 powerofpositivethinking

 
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Posted 13 January 2014 - 03:32 PM

unfortunately the Enterolab results didn't help and do in fact leave me even more confused.  I don't possess DQ2 or DQ8, but instead have the gluten sensitivity genes which aren't medically backed anyway  :(

 

 

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1      0303   

HLA-DQB1 Molecular analysis, Allele 2      0501   

Serologic equivalent: HLA-DQ   3,1  (Subtype 9,5)


 

TEST INTERPRETATION(S):

Interpretation of HLA-DQ Testing:  Although you do not possess the HLA-DQB1 genes predisposing to celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to non-celiac gluten sensitivity, in your case HLA-DQB1*0303 and HLA-DQB1*0501. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.


  • 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  :) 


#114 powerofpositivethinking

 
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Posted 08 February 2014 - 04:17 AM

so even though I received my LabCorp results awhile ago via my online portal account, I had my follow-up GI appointment yesterday.  I thought it was going to be a, "Your numbers are moving in the right direction, so keep doing what you're doing," kind of appointment.  In fact I only made the appointment so that in the future when I wanted tests, they would agree to them.  However the appointment was super productive!

 

It was very evident the GI has been doing research on things, well despite the fact that he told me he listened to an interview where a doctor said that those with NCGI/celiac disease really need to only cut out wheat and that barley and the like are fine  :rolleyes:  I think he could see the skepticism in my face.  I didn't tell him that I had a reaction to Rice Dream, which is processed through barley, and Udi's Granola with their certified gluten-free oats.  Despite that statement the rest of the appointment was great!

 

He said that he reviewed my file the night before, which made me happy that he took the time to be proactive and prepared.  First, he did say that my numbers are headed in the right direction.  He showed me a diagram of the digestive system and said that during the endoscopy he could only reach to a certain point, but he believes that I could have lesions/villous atrophy beyond the region of the scope.  He discussed this before, but the fact that he said it right away made me really happy, and I didn't even ask him about that possibility again, he brought it up himself!  He also said my positive DGP IgG test was a very specific test for celiac disease...this is news to me  :lol:  

 

I told him I've been feeling so much better and my newfound happiness/confidence definitely radiated through the appointment backing that statement :)  He did ask what my concerns were so I said that I know my Vit K is climbing in the right direction, but it's only risen .05 in a little less than a year and I'm still far away from the low-end normal range.  Last time I saw him he suggested I go see a hematologist, but I never did.  When I said that I hadn't and asked again if I should, he changed his tune and instead ordered other tests  :)

 

I'm not sure what, if anything, will turn up, but I will have the following tests done next Friday:

 

PT/INR (Prothrombin Time)

PTT (Activated Partial Thromboplastin Time)

Feces Fat Lipids Qualitative

Magnesium 

Phosphorus

Metabolic Panel

CBC 

Hepatic Function Panel

 

Also I asked for an order to get the celiac panel done again in the future, and he gave me the script right away.  I'm supposed to go back in 6 months, so I'll get it done right before then.  I told him my GP advised against supplementing Vit. K, but he told me to go back to supplementing it.  Despite my previous blood test of a normal magnesium level, I told him I supplemented with it and it really helps me use the bathroom with ease, so that's why that test is being run despite only 1% of your body's magnesium circulating in your blood.  I'm not sure why phosphorus was ordered and didn't realize it was on the sheet until after I left the office.  I did ask if I could have potassium run since it was slightly low before, and his response was let's just order the Metabolic Panel and CBC since it's been a year for those.  yay  :)

 

I'll post results when I get them since I like to keep everything in one place  :)

 

I made the comment that the bloating hardly ever happens anymore, and I didn't realize how much that affected my mood.  He said that so many people think constant bloating is normal, but really it just means something is wrong in their body.  

 

Even though I was upset over my previous posts and gene test results, it looks like perhaps in the future with more testing and research, DQ9 might be considered a celiac gene: http://www.ncbi.nlm....pubmed/22342873

 

I used to love on Good Morning America when they used the India Arie song "A Beautiful Day," as their theme song.  The lyrics "Life is a journey, not a destination," are so completely true.  What a journey this last year has been!


  • 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  :) 


#115 RMJ

 
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Posted 08 February 2014 - 05:25 AM

Prothrombin time will be prolonged with a vitamin K deficiency. Looks like your doctor is trying to see how much of a problem your low vitamin k level is.
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#116 GF Lover

 
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Posted 08 February 2014 - 05:53 AM

Wow POP.  You are certainly going in the right direction.  You do know that a tiny amount of people don't have the genes but have dx'd Celiac Disease.  This could be YOU, just a thought.  Your Doctor sounds like he's totally on board now and that's great.  

 

Keep us posted.

 

Colleen


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

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#117 GottaSki

 
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Posted 08 February 2014 - 08:25 AM

This is good news...looking forward to hearing more of doctors that are learning correct details of Celiac Disease :)

 

It's very good to make sure there are not other issues causing the slow rise of Vit K...but thought I'd let you know it took 18 months for all of my levels to rise to normal...so sometimes it just takes more time.

 

Thanks for sharing this experience...it really is a refreshing doctor report!


  • 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 :)


#118 powerofpositivethinking

 
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Posted 09 February 2014 - 04:14 AM

Lisa,  I suspect and am hoping that time will also fix it :)  Vitamin D came up when taking those mega doses 50000ius once a week, but dropped a little when I stopped.  When I did mega dose supplementation with K my level did climb from <0.13 to .16  I keep reading of the link to bone health with Vit K, so that's my biggest concern.  The doctor asked about bruising, and I told him it was a lot less.  I did tell him about two weeks ago, I ended up with a large bruise on the inside of my right inner thigh and had absolutely no idea where it came from.  I also have a small circular bruise and group of petechia right now on my left thigh. My blood doesn't seem slow to clot, but my wounds do take awhile to heal completely.  I remember a few years ago on our beach vacation I went rollerblading without high enough socks.  I rubbed away the thin skin near my ankle, and it took it about two months to heal.  I thought that was normal since it was thinner skin, and now I know that's not normal  :)

 

It's very good to make sure there are not other issues causing the slow rise of Vit K...but thought I'd let you know it took 18 months for all of my levels to rise to normal...so sometimes it just takes more time.

 

Colleen, I have read on other threads about being celiac without DQ2 or DQ8.  Ravenwoodglass did post on another thread I started about being a firmly diagnosed celiac with double DQ9 genes.  I believe in the future more genes will be recognized, but right now the US only agrees with DQ2/DQ8 :mellow:  I did find this presentation by Dr. Umberto Volta from the 2013 ICDS where on page 5 he states, "Deamidated gliadin antibodies (DGP) IgG were consistently negative in NCGS patients except for one case at a very low titer positivity."  In my case, being double the normal reference range certainly does not equate to a low titer positive   :)

 

here's the link to the presentation: http://www.drschaer-...rience_2013.pdf

 

Wow POP.  You are certainly going in the right direction.  You do know that a tiny amount of people don't have the genes but have dx'd Celiac Disease.  This could be YOU, just a thought.  Your Doctor sounds like he's totally on board now and that's great.  

 

Keep us posted.

 

Colleen


  • 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  :) 


#119 nvsmom

 
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Posted 09 February 2014 - 05:55 PM

I'm so glad you had a good appointment.  :) Your doctor sounds like a real keeper.


  • 0
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Celiac - June, 2012
Hypothyroid - August, 2012

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#120 powerofpositivethinking

 
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Posted 17 February 2014 - 09:04 PM

I haven't gotten a call from the GI doctor yet, but I did receive my lab test results online today.  Standouts are chloride is one point low, and glucose is one point high.  Both are one point, so I don't consider it and am hoping it is not huge deal, but I will be more mindful of my sugar intake because that was a fasting result <_<  My stool tests confirm that I have fat malabsorption for both neutral and total fats.

 

All of my prothrombin tests are normal, so that points to the fat malabsorption as the cause for the vitamin K deficiency.  I was happy to read that since the qualitative test was positive, I will not have to do the 72-hour collection test, so that's a huge positive  :)

 

Here is what Labcorp lists as the stool test uses: Increases in neutral fat are commonly associated with pancreatic exocrine insufficiency. Increase in stool total fats (neutral fats, soaps, and fatty acids) is likely to be associated with small bowel disease.

 

Does anyone know what to do about fat malabsorption, or will it most likely fix itself the longer I am gluten free?

 

BloodTest1_zps83f3282b.jpg

 

BloodTest2_zpscf8aacfc.jpg

 

FF_zpsc33452f3.jpg


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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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