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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.

Pretty Upset Right Now...
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10 posts in this topic

So I had a blood test last week for Celiac Disease. I just heard back from my doctor. It was negative. I was eating gluten free for about a month up until about 2 weeks before the test. Then I started stuffing myself with gluten again. I know they say you need to be eating gluten for 4 weeks or your test could come out negative. But I thought if I ate as much gluten as possible for 2 weeks it might equal out to 4 weeks.

I have so many unexplained symptoms that all point to Celiac. This has been going on for over 4 years now!!

I have horrible stomach pain, bloating and cramps. I have diarihhea almost every day. My stools are always light colored (Sorry TMI). I have had a colonoscopy and endoscopy that came back free and clear of cancer and colilitis. I have GERD.

I get headaches at least 3 or 4 times a week. I have horrible anxiety and brain fog. I have a couple of swollen lymph nodes that are not cancerous. I read a post on here that some others have had this. And they went away after being gluten free.

I don't sleep well. I have infertility. My husband and I have been trying to have a baby for 4 years now. No luck with that. And I know it is me because he has a 6 year old daughter from a previous relationship.

I have swelling in my knees sometimes. And they hurt. I get joint pain in my wrists, ankles and neck a lot. I get itchy sores on my scalp. I have lost a lot of hair. I am a 30 year old female. I shouldn't be losing so much hair.

I was hoping that my doctor was finally on the right road. That I would finally have an answer to why I have been feeling so horrible for over 4 years. Now I am just depressed and more upset because I still don't have an answer. :(

Any suggestions? This is so frustrating.

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That exact thing happened to me. My doctor actually told me to go gluten free... BEFORE MY TEST. Going gluten free before your test may cause you to have a negative test. I had what appeared to be a classic case of DH but they didn't biopsy it. In fact, ever since I've gotten my thyroid diagnosis, any time I have a health issue then it gets ignored if it isn't related to my thyroid. I almost wish I could start over completely fresh with new doctors with no medical history.

After my negative blood test, he threw celiac in the scrap heap and didn't look any further. Now I'm on county insurance and am stuck with whatever the doctors want to do.

I treat myself as if I do have celiac and stay gluten free.

Hang in there, there are a lot of people who are in our same boat.

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Could you suggest to the doc that you keep eating gluten for a few more weeks, and then redo the test? There are other ways to test for celiac too. If you have a rash (dermatitis herpetiformis) you can get it biopsied, or they could search for damage in your intestines.

Then there is the possibility you might want to keep being undiagnosed if you don't really need an official diagnosis.

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While you were eating gluten free, did you feel better?

If so, then you have your answer. You do not need a dr to agree with you.

Being gluten-free could have messed up the test, or he may not have done a full panel. OR, you might not have celiac.

Doesn't mean you are at square one. Gluten intolerance would also cause the same symptoms, and the treatment is the same- no gluten. If it happens you are gluten intolerant instead of celiac, then good for you. Then you DONT have an autoimmune disease. That really is GOOD news!

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I feel like you should try going Gluten free again anyway and see how you feel. Like someone above said, if you feel better, then there is your answer.

I went to the GI doc today and she scheduled me for a full blood work and an endoscopy. She said if nothing shows up she still wants me to go gluten-free for a while and see what happens. I was really happy she said that. Celiac can;t be treated, there is really nothing a dr can do except tell you to eat gluten-free, so it cant hurt to just do it.

My Dr said to keep eating gluten until my Endoscopy but to start going gluten-free immediatley after. So a week and a half.

Good luck, you should at least try it out! I feel like even with all the medical advances as far as celiac disease goes, they still have a WAYS off before figuring out a more accurate way of diagnosing.

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I stuffed myself with gluten for three months and still tested negative. Unless you want to keep eating gluten for another few months to re-do the testing, you might as well accept that you're not going to get an official diagnosis now, but you can go gluten free anyway. Heck, you could stuff yourself with gluten for years and still test negative, it doesn't mean it's not bad for you. There are heaps of us here who tested negative but who removed all gluten from our diets and felt amazingly better for it.

There are a lot of threads about this. The testing sucks, there are so many people it seems to fail. But going gluten free is nothing like as bad as it seems before you've done it - and the benefits can be amazing. Just make sure you decide if you want to pursue the testing or not as once you go gluten free you can't have the testing done unless you do a long gluten challenge.

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My nutrition teacher was quite knowledgeable about celiac and she said that people could test negative for several years before testing positive. And this is even while eating gluten. She also said that many people who were "gluten intolerant" but negative for celiac, eventually were positive for celiac via one of the tests.

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So I had a blood test last week for Celiac Disease. I just heard back from my doctor. It was negative. I was eating gluten free for about a month up until about 2 weeks before the test. Then I started stuffing myself with gluten again. I know they say you need to be eating gluten for 4 weeks or your test could come out negative. But I thought if I ate as much gluten as possible for 2 weeks it might equal out to 4 weeks.

I have so many unexplained symptoms that all point to Celiac. This has been going on for over 4 years now!!

I have horrible stomach pain, bloating and cramps. I have diarihhea almost every day. My stools are always light colored (Sorry TMI). I have had a colonoscopy and endoscopy that came back free and clear of cancer and colilitis. I have GERD.

I get headaches at least 3 or 4 times a week. I have horrible anxiety and brain fog. I have a couple of swollen lymph nodes that are not cancerous. I read a post on here that some others have had this. And they went away after being gluten free.

I don't sleep well. I have infertility. My husband and I have been trying to have a baby for 4 years now. No luck with that. And I know it is me because he has a 6 year old daughter from a previous relationship.

I have swelling in my knees sometimes. And they hurt. I get joint pain in my wrists, ankles and neck a lot. I get itchy sores on my scalp. I have lost a lot of hair. I am a 30 year old female. I shouldn't be losing so much hair.

I was hoping that my doctor was finally on the right road. That I would finally have an answer to why I have been feeling so horrible for over 4 years. Now I am just depressed and more upset because I still don't have an answer. :(

Any suggestions? This is so frustrating.

Do you have a list of the tests your doctor did? And what the actual results were?

If you are really needing that diagnosis, you can go back on a gluten-filled diet for a longer period and get the tests without having your doc order them. I use HealthcheckUSA. They are currently charging $200 for a very good panel which includes both the IgA and IgG versions of TtG and Deamidated gliadin peptides. It also includes the anti-EMA and total serum IgA.

Or, decide that you are gluten intolerant and stick with the gluten-free diet. You felt much better on the diet, and thankfully you don't need permission to follow a gluten-free plan.

Eating twice the gluten for half the time does not speed up any damage that might be initiated. Some people don't start having damage for a very long time. And a lot of people have a rapid decline in antibodies when they remove gluten from their diet. It kind of surprised me to run across that in all my reading.

It is so very frustrating to feel ill and not be able to find answers. :(

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My blood test went from very positive to normal after being gluten free for only 10 days. My son was still positive after 6 months gluten free. It took him a full year to finally be in normal range. It is different for everyone.

My doctor told me that you need to be eating a regular diet for 4-6 months before being tested - 2 weeks is absolutely not enough.

Your symptoms are EXACTLY what I was experiencing (except for the infertility part . . . my symptoms started after the birth of my last child)

Since I didn't want to continue eating gluten just to get another positive test (it was very clear to me that I felt much better gluten free) and since my son was diagnosed with Celiac Disease, my doctor "diagnosed" me with gluten intolerance. Whatever -

It has been a year since starting the gluten-free diet and I feel normal. Hair has grown back, anxiety is gone, GI issues have resolved. Headache maybe once a month, etc. etc. I feel like I did 10 years ago . . .

If you don't need an actual "diagnosis" from your doctor, just try the diet (and give it a chance - like 3 months) and see if you don't feel great.

Cara

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That exact thing happened to me. My doctor actually told me to go gluten free... BEFORE MY TEST. Going gluten free before your test may cause you to have a negative test. I had what appeared to be a classic case of DH but they didn't biopsy it. In fact, ever since I've gotten my thyroid diagnosis, any time I have a health issue then it gets ignored if it isn't related to my thyroid. I almost wish I could start over completely fresh with new doctors with no medical history.

After my negative blood test, he threw celiac in the scrap heap and didn't look any further. Now I'm on county insurance and am stuck with whatever the doctors want to do.

I treat myself as if I do have celiac and stay gluten free.

Hang in there, there are a lot of people who are in our same boat.

This happened to me as well a year ago! The doctor/specialist told me to go Gluten free and 2 months later told me he was testing me for Celiac's. NEGATIVE!

This year they tested me again after I'd been eating it consistently and whah-lah!

But I would say just continue eating Gluten Free if it made you feel better. Just be sure to take your vitamins so that you don't become deficient, especially Vitamin D. Just don't starve yourself. But I'm not a doctor...just sometimes you gotto do what makes you feel better.

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    • Hi Rachel and welcome I think you've found the single best site on the web for help and advice. Hope it's of use to you. I tested negative for celiac so no referral. My experience with NHS however suggests it could be worth phoning your Gastro's office and asking the admin staff there to check on this. Things get overlooked... I would avoid anything with those warnings on. It's a pain in the arse because, for example, it recently appeared on a brand of nuts I like. However having some experience of production and marketing environments that warning will only be going on the pack if someone in the company thinks there's a chance of contamination. There's always other products to choose from so I don't take the chance.  Walkers crisps have given me a reaction, yes even the sodding ready salted ones  It's something to do with their production processes. I think Gary Lineker may dance through the factory each week spreading handfuls of flour for good luck. Whatever, I now avoid them.  My energy levels improved over a few months after the diet. It took longer the second time after my challenge. I was still noticing improvements / weird resolutions of odd symptoms up to 9 months to a year later... Lots of good advice here: All the best! Matt  
    • Ah.... Settles back, dons funny hat, smokes pipe, plays violin, injects heroin etc... I think you need to treat yourself as your own science experiment. If you're ok at home with all of the drinks then you can almost certainly rule out alcohol intolerance and thank your bodies burgeoning super coeliac powers of gluten detection for the reaction. Clearly your powers have grown in the past five years young jedi... In which case maybe there's a drink you can order which would reduce this risk, maybe asking for the bottle and a clean glass, forgoing ice, straws etc, anything to simplify matters and reduce the number of contaminant variables.  One thing I'd avoid would be 'mixers' from the shared line. Not because there's gluten filled drinks going through them, typically its just coke, lemonade and soda water, but because the nozzle sometimes dips into the drink that's being filled. Paranoid? Maybe, but I avoid them now and pay the extra for a bottle.  A word on glasses. Most bars have a dedicated glass washer and they're good, to a point. I've worked behind a bar in the past and the washers are only on for a very short time, they can run up to 35 times an hour... I've seen lipstick on glasses from them and whilst the chances of contamination are probably slight... Now if you're out for a night at different places, it will be very hard to work out where its happening. So my suggestion is to go out to one bar only and pick a decent one. Speak to a bartender or manager, explain to them just what a special snowflake you are   and get one definitely clean glass at the outset then keep it for the evening and just get it refilled. Pick one drink only and stick to it. I'd suggest wine as maybe its easier on the stomach than the bubbly prosecco and you can get the little bottles without any chance of contamination but that may be nonsense See what happens... If you're ok, then you have an answer. You've become more sensitive and your reacting to trace gluten. *removes funny hat, discards pipe, hides syringe...      
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    • Hi guys,

      I am newly diagnosed celiac. I found out about a week and a half ago, and have been gluten free for 5 weeks (I stopped after the biopsy was taken). I never really suspected celiac, so it was quite a surprise, but when I started reading about it it made a lot of sense in terms of symptoms etc. 

      I am 34 yr old female, my main symptom was lack of energy for as long as I can remember, blood tests only ever showed low iron (not quite anaemic) but supplements never made a difference (now I know why!). For the last 5 years I have also had constipation, bloating and gas, but I put it down to stress or bad diet and if I am honest because it was a bit of an embarrassing issue to talk about I became complacent. 

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      - For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas.

      - I have always had low iron which is most likely due to celiac but also as I don't eat meat (I do eat fish), I am hoping now that iron supplements will help now so have been taking the gluten-free Floradix for the last week. Anyone noticed a difference in this after stopping gluten?

      Thanks anyone for taking the time to read, and feel free to put any general advice you have

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