Need Help With Tests Results Please

[powerofpositivethinking]

I just posted about getting glutened this week in the coping forum, so those effects are wearing off, but right after I made that post I checked my e-mail and my latest Vitamin D results were available.  I've been taking my 50000 ius of Vitamin D once a week for a little over a month, and my result climbed from 28.3 to 40.7  wooooohoooo!!  I'll take it 

 

https://www.celiac.com/forums/topic/103640-glutening-round-2/

[powerofpositivethinking]

came back to update since I like keeping everything in one place    Even though the GI saw wouldn't officially diagnose me with celiac since I had a negative biopsy, I have been getting follow-up blood tests.  So far I had two done back in January 2013 where my DGP IgG was a 43/41 with anything over 30 being a strong positive and another in June 2013 where I was at a 33. I was told to get the next one taken 4-6 months after that, so I got blood taken this week to have the celiac panel, Vit D and Vit K run again. I got a voicemail from the GI office this morning that said my results were in and are stable.  I get results electronically through LabCorp 48 hours after they've been reported to my doctor, so I will get to see if their version of stable and mine are the same thing

[powerofpositivethinking]

fair warning: long post ahead...

 

so I reread through this entire thread and realized two things...I've come so far from this past January with the help of others on this site, and I use way too many smiley faces in my posts       

 

latest results are Vitamin D fell two point to 38.4, but two things I know I need to do are take my supplements more regularly, and I'm going to increase my intake to 4000 iu a day during the winter.  

 

I do not have a result for my Vitamin K level because after receiving my results electronically it said the following: "LabCorp was unable to obtain a suitable specimen for the following test (s) and is providing the the patient with recollection instructions."  I remember the last time I had Vitamin K run the lab technician said for accuracy the specimen had to be protected from light.  The lady on the phone I spoke with said this time the specimen was not protected from light which is why it couldn't be tested, so I am going to get that one redrawn tomorrow.

 

Now for the results I was really interested in receiving, but first, a recap...I am a normal IgA producer.  My total IgA being 252mg/dL in a range of 91-414.  All my IgA results were negative as was the ttg IgG, and although my DGP IgG still isn't in the negative range, I am finally in the weak positive range!!  I had a DGP IgG result of 24 which fell in LabCorp's weak positive range of 20-30.  Was I a little upset that it wasn't in the negative range?  Yes.  I'd be lying if I said I wasn't since I believe I've only been glutened twice since starting the GFD, and I still hardly ever eat out in restaurants, am extremely vigilant about cross contamination and have checked all my personal care products and meds/supplements for gluten.  I keep thinking maybe I should switch back to a completely whole foods diet, but I am hesitant because I don't want to overly restrict myself with food because that led to eating too much in the past and making poor choices, which now I am certain were all linked to gluten anyway!  I always thought my GI problems outweighed my neurological problems, but I am so upbeat and happy now!  I don't feel the urge to eat all the time, and dare I say it...for the first time in my life I prefer salty to sweet food.  I've ALWAYS loved sweets, and I still enjoy them, but I don't eat near as much.  I feel like I'm finally beginning to have a normal relationship with food.  Only took 27 years, but better late than never!!  

 

I feel a million times better than I did in March!!!!!!  I don't have brain fog anymore.  It's weird to describe, but I no longer feel like someone is pushing down on my brain.  Instead when I wake up in the morning my head feels open, clear and wonderful!  About a month ago I just stopped one day, and thought, I feel so happy.  The GI symptoms were always my biggest complaints, and although I've written in the thread about taking depression meds for a short time and having anxiety, I didn't realize how much gluten really made me feel low.  The GI symptoms have gotten significantly better.  I was doing really well with constipation, but then when I started to add in pure dairy products I got stopped up, and when I eliminated them, things didn't magically return to my new normal.  I no longer take any fiber supplements, and I usually go once a day but every so often I'll miss a day.  I started taking magnesium in the evenings, and that helps a lot.  I only seem to get bloated if I eat too many carbs, and this one makes me really happy, right before that time of the month which used to be the only time I was ever bloated and constipated.  It's no longer 24/7.  I've been walking and doing yoga and have lost about 9 pounds so far, so I'm finally headed in the right direction.  

 

 

I'm more outgoing, and I participate in social events because I am stronger than I was 9 months ago and feel more confident standing up for myself and my health.  The only problem that lingers is something I've posted about in other threads...my parents.  Sometimes I think they get it then bam I get thrown a curve ball!  I drove to visit them this weekend, and my Mom tells me about her colleague that has gone gluten free with her son.  My Mom said the colleague's son was not formally tested for celiac disease, but instead the doctor said try gluten-free and see if it helps.  That was my first red flag    How many times have we read on this site that people's doctors say to go off gluten without being tested?  Then the individuals, and rightfully so, get so upset when they are told they have to do a gluten challenge to get a proper diagnosis because their doctor did not follow proper procedures.  My Mom didn't like it when I told her that the doctor should have tested her colleague's son because now a gluten challenge would have to be performed to see if her son had celiac.  Then my Mom said she went out to eat with this lady, and my Mom asked her if she brought her own food, and she said no and that she can always find something to eat off the menu and didn't even ask the server about the preparation methods    So my Mom automatically thinks since this lady can do it, why can't my daughter?  To which I replied, "Mom, she nor her son were properly tested, so maybe that's how she chooses to follow her diet, but I can't nor do I want to take that chance."  I also told her that down the line I'm the one that will be paying for my medical bills if I would choose to live irresponsibly and ingest gluten.  I'm the one that will literally be paying for it both physically and financially.  After that exchange, I finally decided enough is enough, and I spent money that I really don't have to order the Enterolab gene test.   I know the gene sensitivity portion of the test is not reliable, but at least it will tell me if I carry DQ2 or DQ8.

 

 

I think one of the most upsetting topics I read about on this forum is infertility.  I can't even begin to imagine other women's pain that weren't able to get pregnant only to realize down the line that they had celiac disease, and if they only had been diagnosed and gluten free sooner, they could have had their own children.  Maybe if I give my Mom information on celiac and infertility that would make her realize that for me being gluten free is necessary if she'd ever like to entertain the idea of having any grandchildren from me.  After coming off the pill, you're supposed to get your period within three months, and by month five and still without a period, I was getting worried, so I called my ob/gyn and got a pill to induce one, and it's taken awhile, but I'm finally regular!  I remember after that five months, I had never been so excited to have cramps in my life!  

 

Excluding the exchanges with my parents, I am truly happy for the first time in a long time!  I feel confident and ready to take on life.  If I feel this wonderful now, I can only imagine how much stronger I will become as my DGP IgG level decreases even more!    

 

To all the forum members: thank you for listening, and I will always be grateful for all the support and suggestions others have given me on this forum.  Thanks for giving me someplace to go whenever my friends and family just don't get it.  

 

I will post my Vit. K result when I get it redrawn.  My New Year's resolutions are to eat more of a whole foods diet and take my supplements daily.  

 

Wishing all of my Celiac.com family a Merry Christmas, and a Happy New Year!!

[notme]

that is fabulous!  (except about your mom, but stick to your guns lolz)  i was miserable when my husband found this site for me.  thank goodness, because i understood NOTHING about this disease.  it's sort of a "HOW TO CARE FOR YOUR NEW BODY" 

 

that "why don't you try going gluten free and see how you feel"  is probably my biggest gripe about doctors!!!!!!!!!!  hey, doc, why not run the damb test THEN try the gluten free.  DUH.  and i sit next to a guy in my club, he is celiac, eating at the buffet and scraping the gravy off his meat.............  he shows me the palms of his hands, they are dh from hell!  let 'em suffer, i guess.  not me.  and, not you:)  good for us   and i don't think you use too many smilies

 

merry Christmas & happy new year, popt!!!

[pricklypear1971]

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!

[powerofpositivethinking]

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:  Open Original Shared Link  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!

[GF Lover]

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

[Gemini]

Geez!  I was getting tired from all the 28 year old energy popping off this post!     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! 

[nvsmom]

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

 

Happy birthday!

[pricklypear1971]

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: Open Original Shared Link 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.

[powerofpositivethinking]

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   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

 

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.

[powerofpositivethinking]

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.

[powerofpositivethinking]

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.

[powerofpositivethinking]

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    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    

 

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: Open Original Shared Link

 

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!

[RMJ]

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.

[GF Lover]

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

[GottaSki]

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!

[powerofpositivethinking]

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   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: Open Original Shared Link

 

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

[nvsmom]

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

[powerofpositivethinking]

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?

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

[powerofpositivethinking]

so after having fat malabsorption come back positive, I was able to get fecal elastase testing done to test for exocrine pancreatic insufficiency.  more on that in this thread: https://www.celiac.com/forums/topic/106464-labcorp-stool-test-results-and-questions/

 

I had another appointment yesterday, and anything below 100 indicates severe pancreatic insufficiency, and my LabCorp result was a 72.  After I finish testing, I will begin taking the prescription based Creon enzymes.  

 

Since I have Vitamin K deficiency, fat malabsorption and now confirmed pancreatic insufficiency, I asked the GI about cystic fibrosis testing since those are three symptoms.  I don't believe I have it but said I would feel better if it could be ruled out since it can be diagnosed in adults.  After he makes some calls to the insurance company to make sure I don't get a huge bill, I will most likely be gene tested.  

 

I have a blood script to get tested for ANA, rheumatoid factor, IGG 4 to test for autoimmune pancreatitis and HGB A1C, which I know is a test related to diabetes    I'm also getting an MRI of my abdomen this week, capsule endoscopy and possible small bowel follow through the following week.

 

I am thankful the GI is being thorough, and my hope is that during the capsule endoscopy, some villi damage is seen in my jejunum and this can all be called celiac related, I can start taking the Creon, and I can be finished with testing.  I've been strictly gluten free for over a year, and I'm not sure if any damage will still be there, but since I'm still having malabsorption problems, I'm hoping it will be visible.

 

I'm one of those that if you look at me, I look perfectly fine and just slightly overweight.  I'm pretty much always in a great mood now because my mental health has improved soooooo much.  Thankfully my family has really come around, and my parents informed me the other week that they will slowly be getting rid of of gluten products and replacing them with gluten free.  This was a HUGE turnaround for them because I've written in several other threads how my Dad commented, "Can't you eat a few breadcrumbs?"  Now when I go to visit it won't be such a battle.  I've held strong, which has not always been easy for me, but really helped me build my strength and confidence over this past year.  

 

Even though my insides are still jumbled, with this mental clarity, bring on the testing and results, and I just have to keep remembering everything happens for a reason.

[GF Lover]

Im so glad you have kept pushing for answers and are getting them now.  Good to hear you are feeling better and the parents are coming around.  Things are definately looking up for you !!  It's much easier to deal with challenges once you know what they are

 

Colleen

[nvsmom]

Yep. Knowledge is power, and you are on your way. 

[powerofpositivethinking]

just copying and pasting my update from another thread: yesterday was my follow-up GI appointment, and it went really well!  He reviewed that my MRIs and small bowel series were all normal, and then came the capsule.  He said he didn't see any blunting, but he did find an ulcer in the ileum and he said there could have been more but it was all dependent on how the capsule moved.  

 

When it comes to the pancreatic insufficiency diagnosis, I know that the MRIs would have shown Crohn's, so that was ruled out and I never have an urgent need to use the restroom anyway, pancreatitis was ruled out through the MRIs, everything else was ruled out except celiac, so I finally got doctor diagnosed with celiac disease.  Out of all the causes for pancreatic insufficiency, celiac is the best one since it means my system just needs a jump start!  I'm picking up my prescription for Creon later today, and I'm hoping this will be the final step to say goodbye bloating and stool sticking to the toilet!!  I'm supposed to be following up in 3-6 months to be retested for fat malabsorption, fecal elastase and the celiac antibodies.  

 

I'm so glad I found this site because if I would have listened to my GI last year when he seemed to think that positive DGP IgG test wasn't a big deal, I would still be eating gluten and probably feeling much worse!  Now he knows differently, and I did say at the end of my appointment yesterday how appreciative and thankful I am that he listens to what I have to say and takes it into consideration.  I realize that is a rarity for doctors, and I'm extremely grateful!

 

this study is encouraging! Open Original Shared Link

 

Happy almost Easter!

[GottaSki]

Great report!

 

Glad things are mostly normal and generally improving! 

 

Finding a doctor that will listen is priceless -- they don't need to know it all -- they need to be open to considering all possibilities and now you have one!!!!

 

Thanks for sharing