Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question Regarding Vit D Deficiency And Gluten Intolerance


MNS

Recommended Posts

MNS Rookie

I don't know where I fit in the spectrum of gluten intolerance--or even if I really DO have a gluten intolerance. My Enterolab test was positive for intestinal antigliadin IgA (104 Units, normal less than 10 units), but now I really don't know what to believe about this test. I wish there were validated results in the scientific literature, but that is another issue.

Re: Vitamin D deficiency--I was found to be deficient, and was put on 50,000 Units Vit D in a weekly dose. My doctor estimated that it would take approximately 6 months to bring my level into the normal range, and I did come into the normal range in that time frame. I was consuming gluten during this entire time. Would the fact that my level normalized with supplementation while still consuming gluten mean anything in terms of whether I am gluten intolerant or not? In other words, if I were TRULY intolerant, would I still be deficient even on this large supplemental dose of Vit D OR would one expect that because the dose is large, that I would normalise even if I had some gut issues as the result of consuming gluten.

I desperately want some "proof" that I shouldn't eat gluten--I know it is silly to be that way. I should do go truly gluten-free for a period of time and just rely on how I feel, but for some reason, I have a need for a piece of paper and a test that PROVES it beyond a reasonable doubt. I guess I come from a family of scientists and I am sure that none of them will believe me if I tell them why I am eliminating gluten.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WheatChef Apprentice

The only published research paper I've read so far that tested celiac stool test kits showed that an unfavorable result for the stool kits because they had a very low sensitivity when compared to serum tests yet they had a much higher specificity than the blood tests. This means that the stool tests were shown to tell more people with celiacs that they did not have celiacs yet told much less people that they did have celiacs when they did not. This means that the stool tests are much more useful than blood work for saying that you do have a gluten problem than they are in ruling out that possibility, so people with a positive result from the stool tests have a much more reliable "yes" than people with a positive serum test.

A few years back positives from stool tests were frequently ruled as inaccurate because it was thought that gliadin antibodies were produced in the gut by other "unrelated" diseases like Crohn's, or ulcerative colitis. Now we know that these diseases can easily be related to/caused by/aggravated by gluten intolerance. As far as the actual presence of antibodies in stools, there are many different published papers that show the intestine as being a site of production for offending items antibodies and stool tests have been shown to be very reliable in testing for other types of antibodies.

A gluten intolerance would simply interfere with either the absorption or synthesis of various compounds but if you funneled copious quantities into you then yes you could overcome this interference. My malabsorption was so bad that I needed to "supplement" calories for many years to keep from disappearing but with consuming over 4,500 Calories each day I managed to get enough nutrients in so that I didn't look like I was already dead.

Based off of the papers that I have read, I think you already have your "paper of proof" as far as having a gluten problem goes. The real proof however will come once you've been off gluten for a few months, it gets to the point where you stop thinking it's possible that the changes are all imagined.

Lynayah Enthusiast

You might want to have your blood checked for IgA and IgG, by a qualified physician who understands gluten-intolerance.

Enterolab might not be the best way to test.

I had blood tests done at University of Chicago Celiac Center. My IgA was extremely high, my DQ8, DQ2 and biopsy normal. No upper-villi celiac, but I was still very, very sick, and I had a host of GI and neurological issues (see below my signature for some of the symptoms I had).

Previous to that, another doctor diagnosed that I had almost no vitamin D in my body at all. Like you, I had to take prescribed mega-doses to heal.

I am gluten-intolerant and absolutely cannot eat gluten. If you are definitely high in IgA, you are the same. For more info, you might want to read Healthier without Wheat by Dr. Stephen Wangen -- on page 111 of the paperback version, there is an excellent chart that shows how someone who is high in IgA or IgG is definitely gluten-intolerant.

Lynayah Enthusiast

PS: If you decide to go for more tests, DO NOT STOP EATING GLUTEN just yet. You need to have it fully in your system before the tests can be run. If you've already stopped eating gluten, you'll need to do a "gluten challenge" for a number of weeks before you can be tested.

kareng Grand Master

Re: Vitamin D deficiency--I was found to be deficient, and was put on 50,000 Units Vit D in a weekly dose. My doctor estimated that it would take approximately 6 months to bring my level into the normal range, and I did come into the normal range in that time frame. I was consuming gluten during this entire time. Would the fact that my level normalized with supplementation while still consuming gluten mean anything in terms of whether I am gluten intolerant or not? In other words, if I were TRULY intolerant, would I still be deficient even on this large supplemental dose of Vit D OR would one expect that because the dose is large, that I would normalise even if I had some gut issues as the result of consuming gluten.

1

Even if you have Celiac probably part of your intestines are working OK. You have something like 22 feet of small intestine. When mine were biopsied, the bottom few feet were fine. The OK parts are able to take in vitamins. The point of giving you a lot of a vitamin is to make sure the good parts of your intestine always have some to chew on (digest). So sorry, that doesn't mean that you don't have a gluten problem.

MNS Rookie

Thanks for the replies--the doctor who prescribed the Vit D ran a lot of celiac tests about 4 years ago--when I was NOT Vit D deficient. My Enterolab was negative at that point as well--or negative around that time. I think I had it tested the year prior. I have always been "addicted" to bread products and that was why I wanted to test. Fast forward a few years...on a Vit D re-test I turned up deficient...and now my Enterolab is positive. I had blood work last week for other celiac markers (have never had genetic testing done, but if all the blood work that was ordered is negative I may consider it) and am waiting on results.

I am VERY confused about what is going on. As I've written in a some other posts, I don't feel like I have good medical support but clearly something is going on with me. For example, I have days (like yesterday and today) where I wake up in the morning with 1/2 of my face flushed and warm--today I have a headache along with it. I usually get a headache with this type of facial flushing--I know this is not normal! I am not running a fever--and the headache is on the side of my face that is flushed. I know it sounds crazy, but these are the "odd" things that keep happening tha make no sense to me! I am just looking to figure it all out.

Thank you for you help.

sb2178 Enthusiast

Typically, 50,000 IU/week brings you back into normal range in less than 12 weeks. 4 and 8 weeks is pretty common. If it took you 6 months, I would bet that your absorption is less than ideal.

Depending on how badly your intestines are damaged, you could still be absorbing a lot. Like poster above said... long, long intestines. Given that your bloodwork was negative 4 years ago, the damage probably isn't that old and maybe less extensive than for some folks.

I'd get the biopsies. It leaves no questions. Make sure they take around 6 (4-8 are the general recommendations) samples. Then you will know for sure that it is celiac, and you actually have to give up gluten etc. (I'm waiting for biopsies now... agh... stressful, but an end in sight.)

Good luck!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gf-soph Apprentice

Thanks for the replies--the doctor who prescribed the Vit D ran a lot of celiac tests about 4 years ago--when I was NOT Vit D deficient. My Enterolab was negative at that point as well--or negative around that time. I think I had it tested the year prior. I have always been "addicted" to bread products and that was why I wanted to test. Fast forward a few years...on a Vit D re-test I turned up deficient...and now my Enterolab is positive. I had blood work last week for other celiac markers (have never had genetic testing done, but if all the blood work that was ordered is negative I may consider it) and am waiting on results.

I am VERY confused about what is going on. As I've written in a some other posts, I don't feel like I have good medical support but clearly something is going on with me. For example, I have days (like yesterday and today) where I wake up in the morning with 1/2 of my face flushed and warm--today I have a headache along with it. I usually get a headache with this type of facial flushing--I know this is not normal! I am not running a fever--and the headache is on the side of my face that is flushed. I know it sounds crazy, but these are the "odd" things that keep happening tha make no sense to me! I am just looking to figure it all out.

Thank you for you help.

It doesn't sound crazy to me - I get this face flushing occasionally and it's awful. I got it a lot more before I went gluten free, now I only get it when I am otherwise unwell and totally exhausted... like now. I always get a headache with it too, so you're not alone. My entire face flushed dark purple for 2 days one time, the dr got me to take antihistamines to bring it back down, I felt so unwell and dizzy when it was going on. If I get a sore red face with a headache, antihistamines help at least half the time - it may be worth a try. I don't take them for anything else, I don't have any actual allergies.

My dr actually put me on a very low dose of antibiotics for more general face flushing, it's complex to explain but I wrote about it in a previous post. If you search in the board for tetracycline you should find it. There's a fairly new thinking about trying to dampen down an overactive immune system using certain antibiotics - at a dose that doesn't actually kill off any good or bad bacteria. By her thinking the flushing was related to general inflammation. I totally understand that people have a lot of reservations about antibiotics, but it was worth it for me.

Thinking about it I don't think I had the really purple face the whole time I was taking it, I went off it about six weeks ago and have had bad red face a couple of times since. I may go back on and see how it goes.

I also know what you mean about bread addiction - I used to call fresh white bread my crack! I used to work in a bakery, so I had a lot of access :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    2. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    3. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    4. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,335
    • Most Online (within 30 mins)
      7,748

    DME
    Newest Member
    DME
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...