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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac And Leukocytoclastic Vasculitis
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I have just been diagnosed with leukocytoclastic vasculitis after an accidentally being glutened. Does anyone else have have this or know of this? Any nformation would be greatly appreciated.

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Ok I only had a bit of spare time to look into this.

There is a link between Celiac and Leukocytoclastic vasculitis. Posters here on the forum have mentioned the "purple spots" and I have thought of the auto immune disease ITP(which also seems to be managed better by a change in diet.)

It seems that Leukocytoclatic vasculitis is also known as hypersensitivity to allergens. (so a much higher concentration of individuals would be posting here.)

Kawasaki in kids kept coming up too. We had adopted a little angel here that had Kawasaki and went through heart surgery.

I have been having symptoms of this myself. (haven't found a doctor that will even begin testing for ANYTHING for a diagnoses)

In my opinion, you are lucky to have a diagnoses. I think there are many more individuals not diagnosed. (which is backed up by the information I read.)

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I'm a celiac and I'm also sensitive to a lot of other allergens that lurk in processed food.  Ingesting gluten (by mistake, of course!) makes me vomit within about ten minutes but other food items like spices - which often contain food colouring or preservative - usually bring me out in a rash or give me diarrhoea.  I've just come back from a holiday in Malaysia and I have been a little bit lax, as I wanted to be sociable, and other people can be hostile to the "I have food allergies" comments.  I drank some white wine (often contains sodium metabisulphite - a killer for my gut) and I ate some local spicy specialities under persuasion.  Now, a couple of days after arriving home, I have those tell-tale purple dots on my ankles and calves, which look like the vasculitis rash.  Sometimes I get these spots under my instep when I know I have eaten an allergen by mistake.

Some years ago I had a giant aneurysm in my brain - in my right carotid artery - but, as you can see, I did get through it.  My experience tells me there must be a link between the two: celiac disease and vasculitis, in spite of the fact that doctors and specialists look at me like I'm crazy when I suggest this.  I'm going to pay attention to those purple spots and keep off the allergens!

Ok I only had a bit of spare time to look into this.

There is a link between Celiac and Leukocytoclastic vasculitis. Posters here on the forum have mentioned the "purple spots" and I have thought of the auto immune disease ITP(which also seems to be managed better by a change in diet.)

It seems that Leukocytoclatic vasculitis is also known as hypersensitivity to allergens. (so a much higher concentration of individuals would be posting here.)
Kawasaki in kids kept coming up too. We had adopted a little angel here that had Kawasaki and went through heart surgery.

I have been having symptoms of this myself. (haven't found a doctor that will even begin testing for ANYTHING for a diagnoses)

In my opinion, you are lucky to have a diagnoses. I think there are many more individuals not diagnosed. (which is backed up by the information I read.)

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
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