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Very Low Vitamin D!

Rockgurl

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Rockgurl Rookie
Rockgurl
Posted

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!

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missy'smom Collaborator
missy'smom
Posted

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!

mushroom Proficient
mushroom
Posted

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??

Rockgurl Rookie
Rockgurl
Posted
  • Author
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....

Foxfire62 Newbie
Foxfire62
Posted
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.

Rockgurl Rookie
Rockgurl
Posted
  • Author
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!

Rockgurl Rookie
Rockgurl
Posted
  • Author
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.

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Roda Rising Star
Roda
Posted
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:

Open Original Shared Link

Open Original Shared Link

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.

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

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