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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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nickymacd

Been Called In By Doc Re Bloods

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Hi there

I'm a newbie posting from Scotland.

A couple of weeks ago I had some bloods taken by my request because I've had maybe two years of toilet trouble in terms of diarrhoea. The bloods came back and with an indicator of underactive thyriod and something to do with my celiac results. I had no idea what celiac is at all but off course, googled it. I have a number of the symptoms; tiredness, bruise like a peach, sudden vomitting, constant trips to the toilet, tummy pain and bloating. I am not underweight howeverI thought it was IBS to be honest. What I'd like to know is if the blood tests taken basically give you a yes or no in terms of being likely to have it or is it that I might be on the threshold. I can't see my doc till next Tues and I just want to know what expect because I am worried. From what I've read, in the UK the next step is to have an endoscopy if the bloods have come back indicating it. I'm just worried really.

Many thanks

Nicky

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Hi there

I'm a newbie posting from Scotland.

A couple of weeks ago I had some bloods taken by my request because I've had maybe two years of toilet trouble in terms of diarrhoea. The bloods came back and with an indicator of underactive thyriod and something to do with my celiac results. I had no idea what celiac is at all but off course, googled it. I have a number of the symptoms; tiredness, bruise like a peach, sudden vomitting, constant trips to the toilet, tummy pain and bloating. I am not underweight howeverI thought it was IBS to be honest. What I'd like to know is if the blood tests taken basically give you a yes or no in terms of being likely to have it or is it that I might be on the threshold. I can't see my doc till next Tues and I just want to know what expect because I am worried. From what I've read, in the UK the next step is to have an endoscopy if the bloods have come back indicating it. I'm just worried really.

Many thanks

Nicky

Hi Nicky!

Yes, the blood work can give you a yes or no on Celiac Disease but many doctors still consider the biopsy "The Gold Standard". The problem with this is that you may test positive for Celiac with your blood work but you may not have enough damage yet in your small intestine for them to find. Then they will tell you that you don't have Celiac, even though your blood work is positive and you'll continue to be sick. Here's what I would suggest.....

wait to see if the tests are positive (blood work) and then you may want to consider the biopsy. I was diagnosed on blood work alone and refused the biopsy because I was so sick at the time. If you are in the UK, then you may have a wait for one but try and see if they will push that up so it can be done right away. You don't want to be continually eating gluten if you have Celiac. Or you could not do the biopsy, if you are confident that the blood work alone will be enough for you to go gluten free for life. Actually, a dietary response for the better on the gluten-free diet will add to a positive diagnosis. But please do not worry. If it is Celiac, this site will help you navigate the gluten-free diet and find all the foods you love to eat. There is a learning curve but it is very do-able. Your symptoms fit Celiac Disease and you are in the ethnic group with high probability for the disease. All my ancestry is from the UK and Ireland and I have a double Celiac gene.....very common over there.

Keep us updated on your progress and test results so we can be of help.

I have been to Scotland....very lovely country. It was one of the best vacations I ever had! Welcome. :D

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Hello. You have no idea how much your reply helped - thank you very, very much. I now feel like I can go to the doc a bit more prepared. My gut reaction (groan ;) ) is to bypass the endoscopy and just get glutten free to see if that improves my symptoms.

I don't know if this is common or not but I'm now finding eating quite difficult because I feel as though I am making myself worse when I should be doing the opposite. I find that I am vomitting some hours after eating. If I do have to have the endoscopy I am going to try to push for it as quickly as possible because the stress of this is having quite an affect - as I'm sure it does for everyone. I'm very glad I've found this forum!

I'm glad you enjoyed your visit to Scotland. It is a beautiful wee country. Which part did you visit? I grew up in the Highlands but have lived my adult life in Edinburgh.

Nicky

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Hi Nicky! Welcome! I announced help in terms of advice seeing we were just dealt the celiac card less than a week ago. She we are also very new to this whole deal. It however isn't me. My 4yo sons bloodwork came back very positive. We did however opt out of the biopsy and started gluten free immediately. He has other special needs as well and felt the biopsy was unnecessary when we could go gluten-free and wait for another blood draw to see if his numbers from (another indicator)

I am actually also Scottish (well Scottish and English). My grandmother came to Canada as a young adult. But I still have many relatives in Scotland. It it a beautiful country!! And a trip over is definitely on my bucket list.

Like I said, I have no advice, I just wanted to say hello. And let you know you are not alone in feeling worried and scared.

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The blood tests are very reliable, howver, most doctors won't give you an "official" diagnosis without a biopsy. As was mentioned above, biopsies can easily miss celiac, so whether you get an "official" diagnosis or not, trust the bloodwork. False positives are almost unheard of.

That said, in the UK you may be eligible for subsidized gluten free food, for which you would need an official celiac diagnosis. So be sure to find out before deciding to opt out of the biopsy.

Also it is critically important that you do NOT go gluten free until after the endoscopy. Biopsies look for damage, which can heal quickly on the gluten free diet.

Welcome to the forum, you will learn a lot here.

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Dear All

Many thanks for the reassuring and informative replies. It really does help to read about other people's experiences - albeit that they can be difficult for folk. My appointment with the doc is tomorrow after work so I might be a little clearer then.

I plan to go in with a couple of questions depending on the specific results.

1) What if the endoscopy comes back negative given that false positives are unheard of?

2) How long a wait (UK system) for endoscopy and results? I have other health issues (don't we all?) which means I hope I can get this done quickly.

3) I have an 11 year old son who has had ongoing bowel probs all his life - has he been tested? If not, then surely that is a priority.

If endoscopy positive then what and how long will it take?

If anyone has any other questions they think it would be useful to raise with my Doc then advice appreciated.

Many thanks

Nicky

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Many celiacs have low vitamin levels because we don't absorb nutrients as well as we should. Common low vitamins are B12, D, calcium, iron and ferritin. There are a few others but I'm afraid I can't remember them. A quick "Dr. Google" search will probably give yo a good list of vitamin levels that you could request you doctor check.

Some doctors don't require a endoscopy if the celiac blood tests are definitive (usually a positive ttg IgA and EMA). If you would like to avoid the endoscopy, you might want to ask about your results and if it is a necessary procedure for you.

Good luck at the doctors office. :)

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Hi

I went through this process in England recently. I would make sure you take a written list of the tests you are hoping for. I didn't know much when I went, and ended up with the most basic celiac test, just 'negative' and no numbers or scale.

I am gutted now as I have no chance of repeating the gluten challenge.

She did send me to a GI and for an endoscopy though. You might have to be prepared to gently educate your GP.

I agree your son needs to be tested - I am working to get my kids tested now. Happy to trade stories!

Good luck with the appointment

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Prepapre yourself for the fact that your doctor probably knows very little about celiac. Most of them have outdated knowledge and will likely not give you the most accurate info.

Regarding the biopsy, most doctors will say you do NOT have celiac if the biopsies are negative. It simply isn't true. The blood tests are very reliable, and some of them are specific for celiac. It will be worthwhile for you to get a copy of all tests that were done.

If you have a positive dx, then yes, your immediate family members should all be tested. Your son may have been screened before and been negative, but celiac can become active at any time and if he has stomach issues now, he may now test positive.

Hope all goes well for you!

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Fantastic!! Thanks everyone. In a couple of hours I'll have been to the doc and hopefully know a bit more. I've copied out some of the info re test names etc and am going into the appointment armed as it were. To date I have a pretty good relationship with my doc so hopefully she won't take offence that I'm going in as an amateur doc.

Fingers crossed and thanks again! :)

Nicky

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Hello. You have no idea how much your reply helped - thank you very, very much. I now feel like I can go to the doc a bit more prepared. My gut reaction (groan ;) ) is to bypass the endoscopy and just get glutten free to see if that improves my symptoms.

I don't know if this is common or not but I'm now finding eating quite difficult because I feel as though I am making myself worse when I should be doing the opposite. I find that I am vomitting some hours after eating. If I do have to have the endoscopy I am going to try to push for it as quickly as possible because the stress of this is having quite an affect - as I'm sure it does for everyone. I'm very glad I've found this forum!

I'm glad you enjoyed your visit to Scotland. It is a beautiful wee country. Which part did you visit? I grew up in the Highlands but have lived my adult life in Edinburgh.

Nicky

I stayed in Edinburgh for a week, then drove up to the Highlands by way of Pitlochery (gorgeous) and on up north. Stayed another week in Drumnadrochit near to Loch Ness and drove all over the place up there. It was fabulous. Then we drove back south by way of Loch Lomond and stayed outside of Glasgow for a few nights before flying home. I really must go back because it was really phenomenal. Nice people and the hiking was just pristine.

Hang in there.....it is tough trying to find out what is wrong but be pushy with the docs if you want testing done. We have to do that here also in States!

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Hello All

So, Doc was very good. She said the normal Coeliac scan range is 0.5 to 5 and my bloods came back 7.9. Really not quite sure what that means but I have been referred for an endoscopy. Approx two months to wait but might be sooner. I also have to have a colonoscopy (which I knew about already) so she is going to request I have both at the same time.

She did acknowledge that the biopsy could come back negative 'if they don't get the right bit' and says that if that is the case then she will still put me on a gluten free diet to see if symptoms ease. She also agreed that my son should be tested and has referred me for more bloods to test vitamin levels. So, all in all a pretty good consultation. Just wish I knew a bit more about what 7.9 means but in a way it doesn't matter.

Phew! And thanks!

Nicky

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Great news (well, you know what I mean)

I am so pleased you got such a good response from the doctor. That's worth a lot.

Well, I guess we will be seeing you around here for a while then.

I take it you were told to stay on gluten until after the endoscopy?

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Great news (well, you know what I mean)

I am so pleased you got such a good response from the doctor. That's worth a lot.

Well, I guess we will be seeing you around here for a while then.

I take it you were told to stay on gluten until after the endoscopy?

Hi there CM

Yes, that's exactly what the doc said - keep up the gluten till the endoscopy. Now that I've seen the doc I have less of a problem with that because I know there is a definite end in sight. In fact, I've decided to see it as a blessing in disguise because it gives me time to read and research more as well as become ready for it mentally, if you know what I mean.

One interesting comment from the doc was that she said that in the UK the estimate is between 2 and 3% of the population have Ceoliac and that the profession is now becoming far more proactive about testing!

I've made an appointment for my son to get his bloods tested in a couple of weeks - not that he knows that because he'll freak!

I guess I will be around this forum for a while and I hope that one day I'll be able to contribute and help others in the way I have been.

Nicky

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Hi

I've only been here a few weeks, it's amazing how quickly you start getting the hang of it!

Sounds like you have a gem of a doctor there.

I only managed 3 weeks on gluten, broke if for 10 days then 5 more days, so my blood was negative. Had endoscopy last week (anaesthetic throat spray) so awaiting results still.

That time on gluten convinced me though...

I know what you mean about time to adjust. I have been totally gluten-free about 5 weeks and I am loving it. The more I have ditched junk and eaten fresh food the better I feel. Well, with an occasional gluten-free brownie.

Maybe my gp will catch up eventually! At least she is taking it seriously.d

Shout if I can help, good luck

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Psawyer and Celiac Mindwarp

Many thanks! I think I have been very fortunate with my doctor and am grateful for it. The same goes for this forum! :P

At the moment, of course, I'm still on the gluten (as per doc's instructions) until the endoscopy results. I will be very interested to discover what difference will be made once it's removed. Either way, I guess I'll likely feel healthier!

Cheers

Nicky

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Did you get a blood test for vitamin levels too? Worth an ask. Mine were all within range, but at the low end for B and D.

Once you are through the endoscopy it might be worth looking at supplements. I am on a multivitamin and sublingual b12, and my energy is rising for the first time in months.

I am looking to add more but have exhausted the gluten-free options in my little town!

Off to the big city soon...

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Hi Nicky,

The celiac antibody tests are pretty reliable when they show a positive, but some of them are not so reliable when they show a negative result. So even if you get a negative blood test, it is good to try the gluten-free diet and see if it helps your situation. Some links below that may fill up your reading hours for a bit.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

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Many thanks indeed. Think I can prob manage most of that but I do like a glass of wine!

Nicky

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Many thanks indeed. Think I can prob manage most of that but I do like a glass of wine!

Nicky

Nicky....the last 3 things to avoid on that list are not mandatory. Everyone is different and you have to go by how you are feeling. I needed to gain weight badly at time of diagnosis so I did eat sugar and starches and amazingly enough, as long they where gluten free, I did not have a problem. You will never know until you try things yourself. The emphasis should really be on not overdoing any one thing. Drinking an occasional glass of wine, having a gluten-free brownie or ingesting dairy does not mean you will not heal. I don't know where the idea came from to avoid all these things for awhile but it's not necessary for all.

I was pretty damn sick and down to 97 pounds at time of diagnosis so I hope that gives you a point of reference when making a decision of what to eat.

You may discover other intolerance's along the way so feeling bad after eating something isn't always about gluten. If something bothers you at first, avoid it until a later date and try again.

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