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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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127 posts in this topic

yes, I was saying that it isn't the be all, end all.  it is separate, having to do with the bone growth aspect of D. and is usually followed in someone with kidney disease or parathyroid issues.

Good point and... for sarcoidosis ...  ;)

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i have to use LabCorp for my insurance, and I had Vitamin D Hydroxy 25 measured in February, but I just looked on their website and saw Calcitriol 1.25 listed as well.  When I call my ob/gyn in a week or two, I can see if they'd be willing to add that also.

 

my plan is to ask for Vitamin D 25 and 1.25

TPO test

Lipid Panel, so I can get more accurate numbers

 

in the meantime, it's a start of a new month, and my goal is to eat the majority of whole foods.  I've been eating a lot of whole foods, and although they're gluten, dairy free, allergen free, i've been enjoying far too many of the Enjoy Life chocolate bars  :P

Edited by powerofpositivethinking
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so even though they were perfectly nice about it, the ob/gyn would only order the Vitamin D 25 hydroxy.  they said I should really be going to my PCP for the cholesterol tests and to discuss other symptoms.  I moved almost 5 years ago, and got an ob/gyn, dentist and eye doctor, but I never got a PCP close to me because they have walk in clinics, and I've seen the same PCP since I was a child.  He's two hours away now, but he knows my family history because he sees other members of my family, and that is invaluable to me.  When I could not shake myself out of my rough time mentally awhile back, I felt comfortable going to him to get it sorted out.  I wrote out a letter with everything that had been going on because I knew I would not be able to keep it together.  I would cry so easily, which is just not me.  He read the letter, and said, "It sounds like you're depressed," and prescribed me Wellbutrin, which I took for a few months to help level me out.  I would not have wanted my first appointment with a new PCP to be talking about anxiety and depression.  I think I will make an appointment with him in June to go over everything and get my cholesterol tested, but maybe it's time to make the switch to a PCP close to me.  

 

I keep reading about hypothyroid and feeling cold all the time, and I match-up with some of the symptoms, but not the high cholesterol part.  I was hoping to get the TPO antibodies checked, but since my TSH dropped from a 2.49 (April 2012) to a 1.33 (February 2013), to them it doesn't look like I'm trending toward hypo, so maybe I need to just relax, and keep doing what I'm doing by eating gluten-free.

 

the constipation is sooooo much better.  I had done a Jillian Michaels video the other week, and even though I was so happy I made it through and had the energy to finish it for the first time in a looonnnggg time, I think it's too much for me right now.  I'm going to be walking and doing yoga.  I need to be kind to my body...

 

I am still getting pain in my hip joints and leg muscles, not shooting pain, but a dull ache  <_<

 

i got my blood taken for the Vitamin D 25 hydroxy test, so I will post that result when I get it.  My previous level was 25.3, and I've been taking a 2000 iu supplement in addition to the 1000 iu in my daily multi.  

 

happy weekend!

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Good Morning!

I think making an appointment with the primary that knows you is wise...starting with a new primary closer to you might work...but I would wait a bit. As your time gluten-free increases many of these symptoms may remedy themselves. That being said...get into whichever doctor you decide is best to have as many labs ordered as you need. The TSH is a pituitary hormones, not a thyroid hormones -- although doctors swear by it to diagnose thyroid issues. You need thyroid antibodies run along with Free T3 and Free T4. I cant remember what all you have had tested...but if it has been three months or more gluten-free I would add full celiac antibody panel along with CBC, CMP, B1 B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc.

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Good point and... for sarcoidosis ...  ;)

do you have hypercalciuria?

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so in February, I was considered Vitamin D deficient with a level of 25.3 with a reference range of 30-100.  I was told to supplement with 2000 iu a day, which I did, in addition to the 1000 iu that is in my multi-vitamin.  I got my results back from my 3 month follow-up, and I am now at a 35.1, so I am no longer deficient by the labs standards, so that is a plus!  However, in 3 months time I've only climbed 10 points, and I took more than my ob/gyn told me too.  Is this a good gain?  My ob/gyn didn't call with any update, and the only reason I know my results is because Labcorp sends them to your e-mail 48 hours after they've been reported to your doctor.   

 

Lisa, I will be making an appointment with my primary soon to ask for some of the tests.  I have a script from my GI for another Vitamin D, K and celiac panel to be done in June.  June 10th will be my 3-month gluten free mark!!

Good Morning!

I think making an appointment with the primary that knows you is wise...starting with a new primary closer to you might work...but I would wait a bit. As your time gluten-free increases many of these symptoms may remedy themselves. That being said...get into whichever doctor you decide is best to have as many labs ordered as you need. The TSH is a pituitary hormones, not a thyroid hormones -- although doctors swear by it to diagnose thyroid issues. You need thyroid antibodies run along with Free T3 and Free T4. I cant remember what all you have had tested...but if it has been three months or more gluten-free I would add full celiac antibody panel along with CBC, CMP, B1 B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc.

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It took me a year for my D to climb from 18 to 30...so 10 points in three months sounds about the same or better...three months is still early days...I would think all numbers will have improved....but may not all be in normal range just yet....took about two and half years for my vitamins and minerals to all improve significantly....celiac antibodies were all significantly lower at three months and have remained very low since my six month mark.

We are all different...so I wouldn't be concerned as long as numbers are improved.

Hang in there and congrats on three months...they really are the toughest as there is so much to learn during transition.

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back to update again-

 

so I'm feeling much better!  I use the bathroom regularly.  It's not always a well formed stool, but it's a regular movement, so I'll take it  :lol: and my anxiety has lessened!
 
I received my 3 month celiac, Vitamin D and Vitamin K results ordered by my GI:

 

celiac panel had everything negative again except:


Deamidated Gliadin Abs, IgG 32 units which was flagged as high (it has dropped from 43/41, so it is an improvement.)
Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30


Vitamin D with reference range 30-100 for my lab was initially 25.3 in February, 35.1 when my ob/gyn tested it in May and now it dropped slightly to 28.3, so I'm deficient again but not by much.  I had to replace my vitamins, so I didn't take any for maybe 5 days at max, so I'm guessing that had an impact.  I have been taking 3000 ius a day of D, but I'm thinking maybe I should ask about upping my dose.
 
Vitamin K1 with ref. range .28-1.78 was initially <0.13, and I am still deficient in Vitamin K thought it went up slightly to a 0.16.  This helps to explain why when I cut myself shaving almost a month ago, it's still healing.  I will be interested to hear his thoughts on this.  
 
my appointment with my GI is next Friday, and I have an appointment with my primary coming up soon as well where I will be getting my cholesterol checked, and my hope is that he'll agree to give me a thyroid panel complete with TPO.  I haven't been to my GP in a bit, so I'll be sure to take all my GI information.  I'm sure my GP will mention something about my weight gain <_< , and I think that will be the opportune time to share my GI info and the fact that gluten zapped the life out of my exercise routine and life in general.  I'm getting back into a routine of exercise and eating right but listening to my body at the same time.  
 
I think the phrase, "Time heals all wounds," is an appropriate motto.
 
in time, in time  :) 
 
EDIT:  I meant to put I have not eaten in a restaurant in three months, but I do live in a shared household with a roommate, so I've done my absolute best to be gluten free.  My food, meds and products are gluten free, and I really look out for cross contamination.
Edited by powerofpositivethinking
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back to update again-

 

so I'm feeling much better!  I use the bathroom regularly.  It's not always a well formed stool, but it's a regular movement, so I'll take it  :lol: and my anxiety has lessened!

 

I received my 3 month celiac, Vitamin D and Vitamin K results ordered by my GI:

 

celiac panel had everything negative again except:

Deamidated Gliadin Abs, IgG 32 units which was flagged as high (it has dropped from 43/41, so it is an improvement.)

Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30

Vitamin D with reference range 30-100 for my lab was initially 25.3 in February, 35.1 when my ob/gyn tested it in May and now it dropped slightly to 28.3, so I'm deficient again but not by much.  I had to replace my vitamins, so I didn't take any for maybe 5 days at max, so I'm guessing that had an impact.  I have been taking 3000 ius a day of D, but I'm thinking maybe I should ask about upping my dose.

 
Vitamin K1 with ref. range .28-1.78 was initially <0.13, and I am still deficient in Vitamin K thought it went up slightly to a 0.16.  This helps to explain why when I cut myself shaving almost a month ago, it's still healing.  I will be interested to hear his thoughts on this.  
 
my appointment with my GI is next Friday, and I have an appointment with my primary coming up soon as well where I will be getting my cholesterol checked, and my hope is that he'll agree to give me a thyroid panel complete with TPO.  I haven't been to my GP in a bit, so I'll be sure to take all my GI information.  I'm sure my GP will mention something about my weight gain <_< , and I think that will be the opportune time to share my GI info and the fact that gluten zapped the life out of my exercise routine and life in general.  I'm getting back into a routine of exercise and eating right but listening to my body at the same time.  
 
I think the phrase, "Time heals all wounds," is an appropriate motto.
 
in time, in time  :) 
 
EDIT:  I meant to put I have not eaten in a restaurant in three months, but I do live in a shared household with a roommate, so I've done my absolute best to be gluten free.  My food, meds and products are gluten free, and I really look out for cross contamination.

 

can you get 15-20 min of sun daily? arms and most of legs uncovered.  and you really want your D over 50, if some of your wt gain is adipose tissue, some of your D is probably being stored in there.... good luck

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I've been working on doing this, and will do so more this summer.  The GI did agree that it is best at 50 or over.  Thanks  :)

 

can you get 15-20 min of sun daily? arms and most of legs uncovered.  and you really want your D over 50, if some of your wt gain is adipose tissue, some of your D is probably being stored in there.... good luck

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well, I had a GI follow-up today, and I guess it was good, but still leaves me with more questions.  He said to ask my PCP about the possibility of 50,000 IUs of Vitamin D and said to take more Vitamin K.  Luckily, I already have an appointment with my PCP on Tuesday to get my cholesterol checked and a physical appointment since I haven't been there in awhile.  My PCP was so happy when I initially lost weight that I'm afraid all he will focus on is the fact that I've gained some of it back, and contribute my nutrient problems to the weight gain.  I plan to give him all my GI test results.  

 

I've been exercising consistently since I have energy, but I'm afraid to overdo it because I've been down that road before and that didn't go well.   I have been following the diet listed in table 1 of this paper although for only a week minus eating dairy, but the little amount of reflux I've had seems to be almost gone with eating this way.  Gives me encouragement to keep it up!  I decided it was time to do something different diet wise, since I didn't get the numbers I thought I would on my most recent blood tests.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/#!po=30.9524

 

Overall, the GI didn't seem too concerned because my numbers are heading in the right direction, but it left me a little frustrated.  He said he didn't want to dwell on the Vitamin K deficiency, and that I could go see a hematologist.  This bothers me because I eat plenty of Vitamin K rich foods.  I am going to the bathroom regularly but sometimes I have loose stools, and I can visibly see my undigested food in the bowl sometimes, but it's usually green veggies which makes me think my body is having trouble breaking down the Vitamin K rich foods I am eating.  I think it's time to try some pancreatic enzymes.  The GI said I could try a small amount, but not too much so that I don't alter my body chemistry.  I feel like my body still needs help in breaking things down because the chemistry I've got right now isn't working :lol:   He said to call either his office or my PCP for follow-up blood work in 4-6 months.  

 

any suggestions for good pancreatic enzymes?

 

EDIT:  I wanted to add, writing on this site makes me decompress after doctor's appointments.  Thank you all for listening!

Edited by powerofpositivethinking
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Well I think you are headed in the right direction as well....I also caution trying too many supplements at the same time...saw you were switching probiotics and Irish used one of my favorite terms....your system is healing and things can simply be wonky until your body learns how to deal with the possitive changes....took my nutrients over two years to completely read normal after decades of low numbers.

That being said...a good Multi is essential....adding more D and K to get those up sounds like a good idea....I happen to be one of the folks that was consistently exposed to sun with extremely low Vit D so while sun is important - it isn't always enough to fill up deleted stores.

Glad to see you are improving and love all the help you are giving others new to Sillyak ;)

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Thanks, Lisa  :)  yep I tend to get ahead of myself.  I did switch to a Mega Food Multi since they don't have gluten, dairy or soy.  The K deficiency is noticeable to me.  I cut my leg last month in three small spots from shaving, and it's still not healed the whole way.  Oh well back to those supplements for now :)   I'll try the new probiotics first and give it some time before trying digestive enzymes though hopefully I won't need those and the probiotics will make a difference.  I wish the GI would have given me better answers instead of passing the buck to my PCP.  Oh well, luckily I have that appointment Tuesday.  Ok time to go enjoy this weekend despite the rain outside  :)

 

Well I think you are headed in the right direction as well....I also caution trying too many supplements at the same time...saw you were switching probiotics and Irish used one of my favorite terms....your system is healing and things can simply be wonky until your body learns how to deal with the possitive changes....took my nutrients over two years to completely read normal after decades of low numbers.

That being said...a good Multi is essential....adding more D and K to get those up sounds like a good idea....I happen to be one of the folks that was consistently exposed to sun with extremely low Vit D so while sun is important - it isn't always enough to fill up deleted stores.

Glad to see you are improving and love all the help you are giving others new to Sillyak ;)

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I went to a highly regarded (by his patients) orthomolecular doctor recently. He checked the vitamins that my GP refused to check, and gave me some larger doses on the few I was low on (A, D, zinc) and prescribed me Creon, which is a pancreatic enzyme, for a month. I have no idea if it's helping, and have noticed minimal difference in my stomach aches and bloating that I get from my green smoothies. Because of that, I'm not sure it's doing much for me - maybe I don't need it.

Just wanted to mention creon. :). I hope the probiotics help.

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Thanks, Lisa  :)  yep I tend to get ahead of myself.  I did switch to a Mega Food Multi since they don't have gluten, dairy or soy.  The K deficiency is noticeable to me.  I cut my leg last month in three small spots from shaving, and it's still not healed the whole way.  Oh well back to those supplements for now :)   I'll try the new probiotics first and give it some time before trying digestive enzymes though hopefully I won't need those and the probiotics will make a difference.  I wish the GI would have given me better answers instead of passing the buck to my PCP.  Oh well, luckily I have that appointment Tuesday.  Ok time to go enjoy this weekend despite the rain outside  :)

 

You don't get ahead of yourself...hell I was way behind both you and Nicole my first year.  

 

Just want to emphasize...once I started figuring this crap out I tried many supplements -- many of which I will return to once my silly gut can tolerate them properly -- um, ya...I still can't take many supplements although I'd really like to take some to up my deficiencies and inflammation issues.  So...if you tolerate them...utilize good gluten-free supplements...just proceed with caution...as I learned the very hard way.

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so I had my GP appointment, and I was very happy with how it went!  I typed up my happenings with the GI and gave my GP all my results.  He was very appreciative to have everything typed up.  I owned my weight gain, and brought it up so he didn't have to do that.  Crushed that elephant in the room :) 

 

He said my thyroid numbers looked fine and took the time to explain why TSH is accurate, although I was laughing inside from all the comments on here since I know it is not the most accurate :lol:  I couldn't get him to agree to the TPO test since my TSH, Free T3 and Free T4 were all normal in the lab ranges.  He advised against supplementing Vitamin K and encouraged me to try and eat even more vitamin K rich foods.  He is hopeful that in time it will rise.

 

It was clear he wasn't up to date on all the celiac lingo, but I took my labs that showed the three positive DGP IgG levels and explained that despite a negative biopsy with the possibility the damage could have been missed since it explored the duodenum and not the jejunum, I am to avoid all gluten.  He told me to continue gluten-free since it has helped my constipation and bloating so much.  

 

He was concerned that despite supplementing with 3000iu of Vitamin D a day, I still showed a deficiency.  I was given a prescription for 50000iu once a week, and I will get retested again in a month.  I'm so happy he agreed to that one!  I also got blood drawn for a complete cholesterol panel, and while I was at it got my TDAP vaccine.  I'd say that was a productive appointment!

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so I had my GP appointment, and I was very happy with how it went!  I typed up my happenings with the GI and gave my GP all my results.  He was very appreciative to have everything typed up.  I owned my weight gain, and brought it up so he didn't have to do that.  Crushed that elephant in the room :)

 

 

He was concerned that despite supplementing with 3000iu of Vitamin D a day, I still showed a deficiency.  I was given a prescription for 50000iu once a week, and I will get retested again in a month.  I'm so happy he agreed to that one!  I also got blood drawn for a complete cholesterol panel, and while I was at it got my TDAP vaccine.  I'd say that was a productive appointment!

the D that you get by script    ....is D2; you should ha e D3;  good luck.

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thanks, frieze  :)

 

I asked him about D2 and D3 since I've read D3 is better, but he said since I was taking 3000 ius of D3 a day he was going to prescribe D2 to see if it made a difference.  can 50000iu of D ever come in the form of D3 script or is that the shot of Vit. D?  

 

the D that you get by script    ....is D2; you should ha e D3;  good luck.

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thanks, frieze  :)

 

I asked him about D2 and D3 since I've read D3 is better, but he said since I was taking 3000 ius of D3 a day he was going to prescribe D2 to see if it made a difference.  can 50000iu of D ever come in the form of D3 script or is that the shot of Vit. D?  

just take se eral of the lesser dose.  You would be able to get D3 50K uits   ha e to search...though.

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thanks for the info!  I am going to try the D2 since it's what he prescribed, and am hopeful it will make a change, but if not, I'll discuss with him about going back to D3 in a much higher dose.  I have been going outside more, but it's a toss up...go outside without sunblock to get Vit. D for 20 min. and develop skin cancer or have low Vit. D and be susecptible to developing other types of cancer :unsure:   I'm pretty fair skin (Irish/English/German) so I've always burned over getting tan.  My brother and sister tan...go figure :lol:

 

I forgot how sore the TDAP vaccine makes your arm! 

 

just take se eral of the lesser dose.  You would be able to get D3 50K uits   ha e to search...though.

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I got my cholesterol numbers back and am very happy with my results!  This is the first time I've gotten blood drawn and sent to a lab, which I've read is a bit more accurate than finger prick tests, although they are absolutely a great thing for screening.

 

Here are my results:

 

Labcorp Lipid Panel:       My results       Ref. Ranges

 

Cholesterol, Total            155 mg/dL      100-199

Triglycerides                      49 mg/dL      0-149

HDL Cholesterol                63 mg/dL       >39

VLDL Cholesterol Cal        10 mg/dL       5-40

LDL Cholesterol Calc         82 mg/dL       0-99

 

That's the best my HDL has ever been.  I'll take it  :)

 

 

 

 

 

                                          Total  Cholesterol     HDL     TC/HDL     LDL     Total Triglycerides  

 

October 2010 (Fasting)            171                     52          3.3           96        116

 

April 2012 (Non-fasting)           153                    60           2.5          -           -

 

April 2013 (Fasting)                  135                   52            2.6        N/A meant LDL under 100    N/A meant triglycerides less than 45

 

 

 

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I got my cholesterol numbers back and am very happy with my results!  This is the first time I've gotten blood drawn and sent to a lab, which I've read is a bit more accurate than finger prick tests, although they are absolutely a great thing for screening.

 

Here are my results:

 

Labcorp Lipid Panel:       My results       Ref. Ranges

 

Cholesterol, Total            155 mg/dL      100-199

Triglycerides                      49 mg/dL      0-149

HDL Cholesterol                63 mg/dL       >39

VLDL Cholesterol Cal        10 mg/dL       5-40

LDL Cholesterol Calc         82 mg/dL       0-99

 

That's the best my HDL has ever been.  I'll take it  :)

 

Those are pretty :)

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thank you  :)  although I know it is important to maintain a healthy weight and I'm working on getting mine back down, I am further convinced that weight doesn't show the whole picture.  I'm sure my GP was surprised when he saw these!

 

Those are pretty :)

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thank you  :)  although I know it is important to maintain a healthy weight and I'm working on getting mine back down, I am further convinced that weight doesn't show the whole picture.  I'm sure my GP was surprised when he saw these!

 

You are correct...weight doesn't show the whole picture...I dropped about 45 pounds over the past 4 years...most came off the first year and a half gluten-free -- the last ten has come off slowly -- but here is the thing -- during this last ten I look like I lost much more than the larger weight loss as I no longer am swollen everywhere.  Inflammation is a nasty business and the tests that were run on me never indicated how much inflammation was in every portion of my body. 

 

Your body is healing -- the numbers are proving it -- keep eating well and moving and the weight or "heaviness" will improve.

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Nice!  It's almost a weird feeling... becoming healthy, isn't it.  LOL ;)  Your hard work is shining through.

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