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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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Hello I'm new to the site. I haven't been diagnosed with celiac disease, but after being made aware of the disease by a friend, I find I have many of the symptoms.

After 6 months and many tests my alkaline phosphotase level had reached 1700+ and my family doctor referred me to a gastroenterologist. He determined the alka. phos. was coming from my liver verses my bones. I noticed high alka. phos. levels is one of the symptoms, but it seems the source is usually the bones not the liver. Am I correct? Or can celiac disease cause the liver to increase these levels?

The first thing the gastroenterologist did was put me on 40 mg of prednisone and within a few days I lost the blotted feeling, sever headaches, body aches, and fever. A liver biopicy indicated it could be autoimmune hepatius, but the sample wasn't large enough to be conclusive. After a a few weeks he suggested another biopicy to confirm, and it turned out negative, my liver was in good shape with no damage. The prednisone brought my alka. phos. levels down, and he started to wean me off. The first day completely off my headaches and fever returned. He checked my blood again to find the phos was rising again.

Now I'm on 20 mg a day and it seems to help some, but not as much as originally. I'm taking 600mg ibuprofen 2-3 times a day. I've been through about every test imaginable except my small intestine. I've also seen an infectious disease doctor and an alergist with no results. I see the gastroenterologist again in 2 weeks, and will ask him about celiac disease. He hasn't made any mention of it being a possible cause of my problem, he did say he thought my liver problem was a secondary problem caused by something else.

Sorry this is so long, the main question I have is has anyone know if alka. phos. elevations from the liver can be a result of celiac disease? I want to go to the doctor with as much info as I can get. Thanks for any help, Larry

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Mine is out of range as well and it is definitely my liver as a result of the celiac disease. The simplest way to determine if celiac disease is your problem is to have a celiac panel (blood work) done. It will tell you much.

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cdford

Thanks for the response, it may sound strange but this is the best news I've received since seeking medical help for my symptoms. :D

After countless tests without any answers I was finding myself wishing that the next test would find some problem just to give some direction to an end of my misery. I missed so much work the last 2 years, there was a lot of financial stress added to my already miserable list of symptoms.

My spleen is also enlarged and I see that celiac disease is said to effect among other things the spleen, liver, and gall bladder. I have beta thalassemia and I was told this anemia disease is the cause for that.

My gastroenterologist seems to be an excellent doctor. I'm pretty certain he will be more than happy to persue celiac as the problem if I bring it to his attention. From some of the posts I've read it appears many doctors are ignorant about celiac disease.

Thanks again, your confirming the possible relationship between my liver disorder and celiac disease, at least lifted my spirits and I'm looking forward to having this test and hopefully putting these symptoms behind me. :)

Larry

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Glad to be of help. I hope your gastro doc is as helpful as my first was. It is so much easier when you have support. Make sure you get any testing done prior to going gluten-free to ensure quality test results. Even then, it is possible to get a false negative just not as likely. You may be surprised at how much you will improve after being gluten-free for a while if the root of the problem is really celiac disease.

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So far I really like my gastro doc, he seems very concerned about finding the solution to my problems. In the last 4 months he has personally called me at home 11 times. I'm not used to that personal touch from a doctor. :)

That fact that he has made no mention of celiac disease as a possibility seems to be the general lack of knowledge about the disease among most doctors. That's why I want to get as good an understanding of celiac disease before disscussing it with him.

This site has a wealth of info and I'm picking up alot of it here. When the general medical industry as a whole is somewhat ignorant about such things as celiac disease, I feel there's great value in the opinions of the people who are/have gone/going through this condition.

Will be talking to the doc later today. Thanks to all for helping me get some understanding of celiac disease.

Larry

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Interesting that a high Alk Phosphatase is indicative of celiac disease. I have not been diagnosed with celiac disease but gluten-intolerance, yet my Alk-P has always been lower than the normal range.

My doctor always blows over it, saying no biggie - only worry when it's high. But I did some research and found a reference that says it could indicate pernicious anemia (deficient in B12) so I'm taking that on a regular basis now.

Thanks for the info.

Stephanie

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I go in for the blood test tomorrow morning. My gastro doc said he had patients with celiac disease, but didn't think I fit the profile but was happy to explore any possibilities at this point.

I'm not going to wait for the results of the test before starting the gluten-free diet, I'll start it tomorrow after the test.

I was on the atkins diet for 3 months a couple of years ago, probably wasn't completely gluten-free as I wasn't concerned with gluten and eat some processed meats and dressing that may have had gluten added. But I did feel alot better when on it than I had before and since. I figure going gluten-free will be easier than atkins cause I can still have my taters. :) Just have to watch what I put on them, and any seasoning I use on meats.

Thanks for the help, Larry

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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