• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Very Low Vitamin D!
0

8 posts in this topic

Hi folks. I am new and this is virtually my first post here. I got my celiac panel results today and as I suspected they were "within normal limits" but my Vitamin D came back very low. I have been avoiding wheat for quite a while because I also have Endometriosis and my nutritionist told me that wheat can effect the pain of that disease so I have hardly touched it for about a year. I haven't been gluten-free though, so I'm mildly surprised that the lab results were negative. I've not eaten much with gluten in it but I haven't really paid attention to labels and have been eating out with sensible choices.

However, I am still very much having symptoms of Celiac Disease...the bloating, constipation, nausea, heartburn etc. The fact that I have low Vit D is quite concerning to me as it would appear to suggest malabsorption at a serious rate. I have been referred to a gastroenterologist but I'm not sure if he'll want to do an endoscopy based on the lab results but I sat down and wrote down my symptoms and got as far as 19! :( I am considering doing the gene test through Enterolab. I decided to start eating wheat again in order to take the lab test but I only lasted 4 days because it made me so ill. I don't think I can do it for a month or two in order to get the endoscopy. I was very positive to the gluten challenge. I would just like to have a diagnosis but in my heart I'm pretty sure I'm celiac because all the pieces are beginning to fit. Now I realize that all my nausea and other symptoms is indicative of malabsorption and I couldn't possibly eat healthier than I do. I eat fresh food everyday, goats yoghurt, cheeses, fruits and vegetables, organic meats. How can I be deficient in Vit D? I know gluten free is the way to go and I'm starting the change already but I just wish I could tolerate gluten long enough to get a diagnosis!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I just found out about and started taking a liquid vit. D supplement that costs around $15-$20 for a year's supply(if you take 1,000 IU a day) depending on where you get it. Carlson's is the brand. They also have a higher dose available. It's a drop so no pills to swallow!

0

Share this post


Link to post
Share on other sites

You're between a rock and a hard place on diagnosis. :( Some of us just have to be content with self-diagnosis, knowing what we know and what the doctors don't know. :P Some doctors will give a diagnosis based upon positive response to the diet and to the gluten challenge (if you have a history of GI symptoms with that doctor).

Your low Vitamin D is very indicative to me. Before either of us knew we were gluten intolerant (neither of us have a diagnosis) Dh and I had DEXA scans which showed a remarkable drop in bone density over a fairly short time for both of us. Unbeknown to me, this was a good warning to go gluten free. I did not know at the time about the connection between celiac and Vit D--in fact knew very little about celiac, period. When i decided to stop eating gluten (to see if it made any diffference to my RA) Dh decided to go along with it too since it would be easier and he had some GI issues. It was only after that, and finding this forum, that I started putting two and two together and we both got tested for nutrient deficiencies (both had multiple including Vit D).

If you have 19 symptoms that could be associated with celiac disease, I would say go with your gut instincts--you probably have it. Do you think he would order a bone density scan??

0

Share this post


Link to post
Share on other sites
You're between a rock and a hard place on diagnosis. :( Some of us just have to be content with self-diagnosis, knowing what we know and what the doctors don't know. :P Some doctors will give a diagnosis based upon positive response to the diet and to the gluten challenge (if you have a history of GI symptoms with that doctor).

Your low Vitamin D is very indicative to me. Before either of us knew we were gluten intolerant (neither of us have a diagnosis) Dh and I had DEXA scans which showed a remarkable drop in bone density over a fairly short time for both of us. Unbeknown to me, this was a good warning to go gluten free. I did not know at the time about the connection between celiac and Vit D--in fact knew very little about celiac, period. When i decided to stop eating gluten (to see if it made any diffference to my RA) Dh decided to go along with it too since it would be easier and he had some GI issues. It was only after that, and finding this forum, that I started putting two and two together and we both got tested for nutrient deficiencies (both had multiple including Vit D).

If you have 19 symptoms that could be associated with celiac disease, I would say go with your gut instincts--you probably have it. Do you think he would order a bone density scan??

Hi Mushroom and thanks for your reply. Yes, I think my doctor will allow further tests. She knows and understands that I am on the ball medically speaking. She's great. It was actually her that suggested it was celiac disease. I haven't yet spoken with her personally about the blood results but I think I will make another appointment to speak with her. She's written a prescription for strong vit D supplementation but if I'm not absorbing anything then I can assume it won't work. I know this because for the past year I've been taking a Calcium/Mag/Vit D supplement that has 400iu of Vit D, a multivitamin that has a further 100iu plus a Cod Liver Oil capsule! That equates to about 400% RDA! Obviously I'm wasting my money because I'm not getting any of it.

I agree with you about it being indicative. My strong gut feeling was that the low Vit D was more relevant than the normal anti body result considering I've been on a low gluten diet for a year or so. As we know, low gluten is not enough...it has to be NO gluten! I immediately knew when I heard about that vit D result. I will push to get what I can but otherwise I will be tempted to self-diagnose and call myself celiac from now on. Thanks for listening. This is a real learning curve. For so long I put my declining health down to Endometriosis and all the while it was a totally different autoimmune disease!

Back in January I herniated a disk in my neck. Now I'm wondering if this has anything to do with my low Vit D levels. Hmmm....

0

Share this post


Link to post
Share on other sites
Hi folks. I am new and this is virtually my first post here. I got my celiac panel results today and as I suspected they were "within normal limits" but my Vitamin D came back very low. I have been avoiding wheat for quite a while because I also have Endometriosis and my nutritionist told me that wheat can effect the pain of that disease so I have hardly touched it for about a year. I haven't been gluten-free though, so I'm mildly surprised that the lab results were negative. I've not eaten much with gluten in it but I haven't really paid attention to labels and have been eating out with sensible choices.

However, I am still very much having symptoms of Celiac Disease...the bloating, constipation, nausea, heartburn etc. The fact that I have low Vit D is quite concerning to me as it would appear to suggest malabsorption at a serious rate. I have been referred to a gastroenterologist but I'm not sure if he'll want to do an endoscopy based on the lab results but I sat down and wrote down my symptoms and got as far as 19! :( I am considering doing the gene test through Enterolab. I decided to start eating wheat again in order to take the lab test but I only lasted 4 days because it made me so ill. I don't think I can do it for a month or two in order to get the endoscopy. I was very positive to the gluten challenge. I would just like to have a diagnosis but in my heart I'm pretty sure I'm celiac because all the pieces are beginning to fit. Now I realize that all my nausea and other symptoms is indicative of malabsorption and I couldn't possibly eat healthier than I do. I eat fresh food everyday, goats yoghurt, cheeses, fruits and vegetables, organic meats. How can I be deficient in Vit D? I know gluten free is the way to go and I'm starting the change already but I just wish I could tolerate gluten long enough to get a diagnosis!

You said you had a panel, and I'm assuming that's a blood panel. The only way to be 100% sure you do or don't have celiac disease is to get scoped and have a biopsy of your intestines. If you have not done this, I would recommend getting an appointment set up and get tested. That would require ingesting gluten. Is there any kind of gluten-containing food that you tolerate better than others? You might want to experiment with that. Otherwise, I would recommend you stay completely away from any gluten and start taking supplements.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I just found out about and started taking a liquid vit. D supplement that costs around $15-$20 for a year's supply(if you take 1,000 IU a day) depending on where you get it. Carlson's is the brand. They also have a higher dose available. It's a drop so no pills to swallow!

Thanks. That sounds great! I'll look into it. I hope I can absorb it!

0

Share this post


Link to post
Share on other sites
You said you had a panel, and I'm assuming that's a blood panel. The only way to be 100% sure you do or don't have celiac disease is to get scoped and have a biopsy of your intestines. If you have not done this, I would recommend getting an appointment set up and get tested. That would require ingesting gluten. Is there any kind of gluten-containing food that you tolerate better than others? You might want to experiment with that. Otherwise, I would recommend you stay completely away from any gluten and start taking supplements.

Right now I am feeling so sick that I dare not return to gluten. I'm not even absorbing healthy food and I don't think I could tolerate a few more months of illness. I am getting weaker and more fatigued all the time. I am not sure if my doctor or my insurance company will authorize an endoscopy with a negative blood panel. I have asked for copies of the actual lab values so I can interpret them. I will do it if they allow but I have been gluten light for a long time. However, due to my symptoms and obvious malabsorption, I presume there is quite a bit of damage to my intestine. I have been referred to a gastroenterologist.

0

Share this post


Link to post
Share on other sites
Hi Mushroom and thanks for your reply. Yes, I think my doctor will allow further tests. She knows and understands that I am on the ball medically speaking. She's great. It was actually her that suggested it was celiac disease. I haven't yet spoken with her personally about the blood results but I think I will make another appointment to speak with her. She's written a prescription for strong vit D supplementation but if I'm not absorbing anything then I can assume it won't work. I know this because for the past year I've been taking a Calcium/Mag/Vit D supplement that has 400iu of Vit D, a multivitamin that has a further 100iu plus a Cod Liver Oil capsule! That equates to about 400% RDA! Obviously I'm wasting my money because I'm not getting any of it.

I agree with you about it being indicative. My strong gut feeling was that the low Vit D was more relevant than the normal anti body result considering I've been on a low gluten diet for a year or so. As we know, low gluten is not enough...it has to be NO gluten! I immediately knew when I heard about that vit D result. I will push to get what I can but otherwise I will be tempted to self-diagnose and call myself celiac from now on. Thanks for listening. This is a real learning curve. For so long I put my declining health down to Endometriosis and all the while it was a totally different autoimmune disease!

Back in January I herniated a disk in my neck. Now I'm wondering if this has anything to do with my low Vit D levels. Hmmm....

I personally would follow through with taking the rx vitamin D. It has done miracles for me. I have been taking 50,000 iu rx per week since January of this year. Within about 3 weeks to a month I started feeling great. From what I can gather you have been taking roughly 700 iu a day of vit D. Thats not nearly enough depending how low your level was. There have been numerous studies that the rda for vitamin D is way too low. The Amerian Academy of Pediatrics just upped the rda of vit d for babies and kids to 400 iu/day and there was a study in Brittain that even suggested that this might still be too low for them. You need to build up the stores and then maintain. Once your intestines heal from going gluten free your body will absorb it. You just need to take more and give the diet a go. I am going to finish my high dose for another 6 weeks or so when my pills run out and then supplement with around 2000 iu/day. My level was at 17 before I started supplementing and now it is around 47. I still need to get up some more.

Here are a couple of links for you to look at:

http://health.msn.com/blogs/healthy-diet-f...px?post=1110587

http://www.sciencedaily.com/releases/2008/...80102122306.htm

and this thread will be helpful to read. There is still alot of misinformation on vit D2 vs. D3. The previous article states that D2 is just as effective as D3.

http://www.celiac.com/gluten-free/index.ph...=56636&st=0

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,403
    • Total Posts
      930,366
  • Member Statistics

    • Total Members
      63,827
    • Most Online
      3,093

    Newest Member
    AerialPhotography
    Joined
  • Popular Now

  • Topics

  • Posts

    • Insurance is a pain! But, one of the interesting things about the Affordable Care Act (ObamaCare) is that it set individual out of pocket maximums. This year it is $7100. I realize that it is a HUGE amount of money, but if you started to pursue the work up this year and don't delay, you could get everything done (scope, labs, doc visits) and know the answer in a couple of months.  The most you would pay is $7100 for everything. Most hospitals have payment plans and some offer discounts if you pay cash. It's just a thought, but sometimes getting all your healthcare needs answered at once can relieve a lot of anxiety and be more affordable in the long run. I wish you luck. I hate insurance issues.
    • Hi all, I know this strand is a little old, but I just joined and have a related concern and wanted to express it in the right place. My period has been changing over the past two years or so. I used to be like clockwork, every 28 days. Now they come a little earlier and don't last as long, or they stop and restart, sometimes with some mid-cycle spotting. I've also been fatigued but that could have to do with work (I run my own business and teach on the side). I didn't make any connection with my celiac DX until yesterday when I was reading about peri-menopause. This month I got the heavy feeling in my legs and the sense that it was coming but... it never came. I thought I had a long time before I had to worry about the change! I'm 42. I've never missed a period, even when I was super-anemic. Ugh. Fortunately my mom said she never had any truly uncomfortable symptoms and she (still!) has the bone density of a much younger person. Hopefully I'll have the same experience. My yearly GYN appt. is coming up in July. Should I just wait and see, then say something to my doc then? Thanks in advance for any light you could shed on this.
    • You would think that there is enough people out there, people with celiac disease, that we'd be able to push for a better standard than 20ppm. The problem is the FDA. Too much lobbying involved. It's no different than the fight people are having with Monsanto. I hear that there are several medications that are showing promise in Canada who I think also has a better standard than us.(not positive about that though)
    • Make sure that you ask the doctor how long she has to stop the supplements before you have her levels tested and be sure to take them all with you when you have the appointment so the doctor knows what she is taking.
    • Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab.  Mine covered any labs at a greatly reduced cost based on a sliding fee scale. Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was. Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing. I hope you get some answers and feel better soon.
  • Upcoming Events