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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.

How To Self-Diagnose If Doc Will Not Run Tests
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9 posts in this topic

I was diagnosed as Celiac about 10 months ago with bloodwork. I have 3 sisters, and after my diagnosis suggested that they each get tested. I sent them all links to websites with information about the disease (1 of them thinks it is very possible that she has it. None of us, even myself, have the 'classic digestive issue' symptoms). I know that at least 2 of them have asked their primary care doctor to be tested, but they live in rural areas and their docs don't think it is worth it since they do not believe they have enough symptoms. I have suggested to one of them (so far) that if they cannot get tested, they might eliminate gluten for some amount of time, and then challenge it and see how it goes. She sounded interested in the idea, so I thought I would do a little more research, and help get her started. I will also propose this to the others over the holidays.

1. If she does go this route, can anyone provide any details, like how long to eliminate gluten before reintroducing?

2. I am also curious about how diligent to be - I am still in the healing process so I do not eat anything that has been processed in a factory with wheat (at least not knowingly). I would think that giving up anything with gluten ingredients, but not worrying so much about CC or medications would make sense, etc - is that reasonable?

3. Any other thoughts, suggestions?

Thanks!

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I suggest she find another doctor. For example, i had a nurse practitioner run mine. As for the cc thing, when you are trying to eliminate it, you need to remove every source, including what is in meds.

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Hi June27

I had a slow progression due to the fact I knew nothing about celiac and in hindsight am clearly a slow learner :ph34r: !

Have not eaten breakfast cereals since childhood or dumplings or yorkshire pudding as they would lay me out!

Went gluten light about 2 years ago (approx) after I was no longer able to eat pasta, pizza, porridge, sandwiches or naan bread.

(Would like to point out that for years I have felt best when eating nothing at all).

Have had DH since teens - so bit of a clue in hindsight :wacko: .

Felt loads better gluten light for about 6 months (avoiding most gluten generally but not totally) then a bit more crept in and I was really ill.

Found out about celiac and gluten and went gluten free.

I now consider myself in the super sensitive bracket.

I would imagine that gluten free (as per general newbie gluten free) diet for a month would have a significant effect but will leave it for those with more knowledge to give better answers to this.

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Sorry

Meaning a month gluten free and then challenge.

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Someone on this board (can't remember who, sorry) helped me with this last year and the advice they gave was really good (I had a negative blood test and no biopsy, so I am still not diagnosed technically).

I think this would work better for someone who has some symptoms they can use for diagnostic purposes though:

Quit ALL gluten for at least two months (this includes every last, little trace of gluten including shared equipment/cross-contamination, and this means that you likely will need to not eat out at all and prepare all food at home- it's only for 2 months).

Pay attention to the disappearance/improvement of any symptoms during the gluten-free phase. For me, personally, many of my GI symptoms were gone by the end of the second week (14 days in), and most symptoms gone by the end of the first month. Be aware that some people go through gluten withdrawal during this time, which can manifest as ataxia, vertigo, etc (this happened to me, but only lasted about 5 days).

After 2 months have gone by re-introduce gluten in a controlled manner: do not randomly start eating gluten-y junk food, or just any old food at a restaurant, but pick a few things (like regular bread, or cream of wheat cereal) and eat the equivalent of 3-4 servings per day for at least a week. This is so you can be as accurate as possible.

Pay close attention to any symptoms that might happen during the glutening phase: these can be GI issues, skin problems, sleep problems, depression, headaches, anxiety, etc.

If a full week has gone by and there are zero symptoms, then gluten might not be the problem...

This worked great for me because when I started eating gluten again it was very clear (within 3 days) that it was a problem for me... I kept eating it and the symptoms got worse and worse until I went gluten-free again on day 7 or 8. I could see a very clear progression of symptoms during the glutening phase and they all disappeared again after I quit gluten for good.

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Thanks - that is very helpful!

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I really hope the sibling would find a different doctor. Get the testing done, and then try a gluten free diet. If she needs medical later from this doctor, the doctor will not respect a "medical need" for a gluten free diet. There may be an excerbation of symptoms after ingesting gluten after a gluten free diet. This makes it virtually impossible for people to do a gluten challenge long enough for a proper diagnoses.

My daughter was put on a gluten challenge when she was 15 months old. She was hospitalized for dehydration after 2 weeks on gluten. She was too ill to have the scope done.

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I really hope the sibling would find a different doctor. Get the testing done, and then try a gluten free diet. If she needs medical later from this doctor, the doctor will not respect a "medical need" for a gluten free diet. There may be an excerbation of symptoms after ingesting gluten after a gluten free diet. This makes it virtually impossible for people to do a gluten challenge long enough for a proper diagnoses.

My daughter was put on a gluten challenge when she was 15 months old. She was hospitalized for dehydration after 2 weeks on gluten. She was too ill to have the scope done.

If the sibling is an adult and doesn't want to go searching for someone who will test because, apparently, there are many doctors who will not even do this unless you are seriously ill with Celiac symptoms, why would it matter at all if any doctor won't "respect" the medical need for a gluten-free diet? I really am having trouble with understanding why people are bothered by this?

My husband had some symptoms, some of which were anemia (rare in men unless they have a GI bleed), weight loss (serious), and low Vitamin D. He tried to have testing done twice and both doctors did incomplete testing and one did the wrong test, both blood work related. How much weight will someone allow themselves to lose and how anemic will you allow yourself to become before you say enough is enough and take matters into your own hands? He went gluten-free last year and within months the weight loss stopped and he just had blood work done and the anemia is gone. Vitamin D is still low but that takes time to correct itself and I think, he needs a higher dose. I asked him what he would say to the doc about following a gluten-free diet and he said that it really isn't any of the doctors business how he eats, which I agree with.

When someone has 1 diagnosed Celiac in a family, there will be others. I think that makes it easier to believe that, if you have symptoms, it most likely is Celiac and certainly if you do, a dietary trial will make that clear. I am impressed that the OP's siblings are interested in persuing this at all because that is not the norm in many families. It is harder to be tested than many know. And even then, they can screw things up badly.

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My sisters are all adults....

All 3 of them did ask their doctors to be tested, which tells me they are at least concerned that they might have celiac as well. I do think that testing would be preferable, but if they do not have a doctor that will order the test, and they are not motivated to find a new one, then doing a gluten challenge seems like a reasonable thing to do. It is ultimately their decision, and I am not one to lecture or tell people what to do.

Only time will tell if any of them actually try the gluten-free diet/challenge, but I want to at least give them the information if they want to do it. The one that is most interested lives in a house with a family member that is likely to be non-supportive, so I am hoping that she will have the strength to go through with it...

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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • 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
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