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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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Hey Everyone!

My name is Katie and I have been gluten free since August 2011. I have gone through many different doctors and test to find out what was wrong with me and I finally read a book about gluten free diet (hasselbeck). I went gluten free and surprisingly most of my symptoms were gone. Surely this can be true, I said, so id go back to eating gluten. Each time I have done this I have said "BIG MISTAKE!" and gone back to eating gluten free.

Well the problem is my mother and family. My mom thinks it is stupid (she has not said this, but, my her remarks I can tell she thinks so.) It makes me feel stupid and I feel like maybe its in my head. Which everyone seems to want to tell me. Well the remarks have gotten the best of me again and I went and ate gluten today. Does anyone else have this problem with feeling silly? It is so aggravating that they don't know what pain you go through and cant just accept it. I also have found out I am intolerant to soy, dairy, and yeast also to make matters worse. I have tried to get the testing to verify I have celiac or gluten intolerance but I can not afford the testing. I think that unless I have that written on a piece of paper, I will be taken as a "joke" or "hypochondriac". Has anyone else had this problem or have some advise for me? Also, has anyone diagnosed themselves because they have simply given up like me?

Thanks everyone,

Katie

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Hi

Yes, many people dx's themselves...& yes, always people think we are a bit crazy over the top!!!!!

Testing is the best way to make people understand but at times that isn't even enough..Just a tip: one needs to be eating wheat when getting tested .If not then your results will not be accurate or correct..

celiac is covered under the disabilities act so for that reason alone testing is needed.....

Many dx's themselves because insurance is not available to them. And if you are an adult & have tried the gluten-free diet , feel better then by all means stick to the diet..And ingore the people who call you strange! Your health is more important ..........and you know your body...

Going gluten-free has never killed anyone! But needing to be gluten-free & not being gluten-free can cause illness & death....rare but it does happen....

blessings mamaw

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Hi Katie,

I wholeheartedly agree with mamaw. It's not like you're smoking, something that would be harmful to your health and something that would be reasonable for your mother to be upset about.

I'm not diagnosed with celiac disease, but I suffer from fairly severe neurological and gastrointestinal issues if I accidently ingest gluten. I spend quite a bit of time on the weekends cooking and freezing foods so that I'm prepared food wise and won't bother friends or relatives with special requirements. I have a little cooler and a little thermos that work great.

Is it a possibility that your mother has it too? (Mine did, and she couldn't deal with the dietary restricions.) I think the restrictions are a piece of cake in comparison to the reactions.

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If only it were "all" in your head, Katie, as in 'a figment of your imagination', rather than in your gut where it is doing its damage. We have to learn to develop a thick hide and a strong will to withstand those who will label us stupid and attempt to deter us from following the path to good health. Don't be lured by the siren call of gluten or be hurt by the ridicule of the ignorant. :rolleyes: Do what you know you need to do to stay healthy. I am totally self diagnosed because no one ever thought to test a "head case" :D Except for later when I convinced my then PCP to test me for the typical celiac nutrient deficiencies - I had most of them.

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My dad (who is the parent that passed this lovely illness on to me) has spent pretty much my entire life convinced I'm a hypochondriac. I long ago made peace with the fact that he is how he is and although he was never the father I wanted, I have no reason to doubt he loves me. Fortunately for me, I'm 2000 miles away so I don't have to listen to him try to coax me into beer or bread constantly. This is all very new to me and so far the only symptom going gluten free has alleviated is gas that always smelled so bad it could gag a maggot. Still, I'd probably have to have a gun to my head for anyone to talk me into eating gluten on purpose. I happen to be a huge fan of not having the windows open when it's like 10 degrees outside. I know it can be hard when a parent puts on the pressure but it's your health at risk. You need to put your foot down. Tell her that a significant number of people are self-diagnosed and that if she needs a doctor to say you're sick she can pay for the test.

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Hey Everyone!

My name is Katie and I have been gluten free since August 2011. I have gone through many different doctors and test to find out what was wrong with me and I finally read a book about gluten free diet (hasselbeck). I went gluten free and surprisingly most of my symptoms were gone. Surely this can be true, I said, so id go back to eating gluten. Each time I have done this I have said "BIG MISTAKE!" and gone back to eating gluten free.

Well the problem is my mother and family. My mom thinks it is stupid (she has not said this, but, my her remarks I can tell she thinks so.) It makes me feel stupid and I feel like maybe its in my head. Which everyone seems to want to tell me. Well the remarks have gotten the best of me again and I went and ate gluten today. Does anyone else have this problem with feeling silly? It is so aggravating that they don't know what pain you go through and cant just accept it. I also have found out I am intolerant to soy, dairy, and yeast also to make matters worse. I have tried to get the testing to verify I have celiac or gluten intolerance but I can not afford the testing. I think that unless I have that written on a piece of paper, I will be taken as a "joke" or "hypochondriac". Has anyone else had this problem or have some advise for me? Also, has anyone diagnosed themselves because they have simply given up like me?

Thanks everyone,

Katie

Katie, you are so not alone and I hope others will share in their own experiences here as what you have posted is quite common. We have been told since small children the importance of wheat in our diet and then for us to realize this is not true, some cannot grasp. If you start reading how damaging gluten is for the body you are going to wonder why more people are not on a gluten-free diet. Dr oz says that soemthing like 88% of the population cannot digest wheat properly, that is a huge %!

My adult daughters were the first in my family to take gluten out of their diet. My mom was the worst as far as cutting them down. She made remarks about how this was all in their heads and all they needed to do was eat a good healthy diet and they would be fine. I questioned what my daughters were doing and I asked alot of questions. Ugh, guess who has the diagnosis of celiac? Yep, me!

My mother has made the comment how vitamins and supplements are junk. I was suffering from a lack of nutrients and supplementing and she knew it. She feels the only real way to get the proper nutrition is thru food. And while it is ideal, if your system is damaged a prson needs help and I was one of them. My sister made jokes about her stomach and said "she thought it was wheat and then she relaized she was just fat." What I realize is that unless this happens to them they have no way to comprehend what I am dealing with. I'm not the one with the problem and I am not the one in denial. They have to deal with their own issues, I have nothing to prove to them. What they have shown is their lack of compassion and pure ignorance.

My blood work got all messed up in the beginning so gastro doc wanted to repeat the process which I tried and made it to day 12. I was just too sick to continue....he wnated me on gluten for 2 months. I went back in and told him that I had to go off the gluten but I did want this documented in my medical records. I thought that would be the end of it and I would have no diagnosis but my body continued to have issues and everything kept leading docs back to celiac. After 7 months of tests for everything else I finally got a "careful" diagnosis of celiac. I have been gluten-free for 10 months and while alot of my issues have been resolved by the diet, I am still chasing those things associated with the disease.

Annette

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I just posted this article by Dr. Mark Hyman onto Facebook from my SF Bay Area celiac network:

http://www.huffingtonpost.com/mobileweb/dr-mark-hyman/wheat-gluten_b_1274872.html

Read it! It shows whether or not you have celiac or severe gluten sensitivity, gluten can in fact still be messing quite deteriously with your life.

For naturopaths and doctors who actually are paying attention to this problem with wheat etc., many suggest that simply going off the gluten is the best test, bar none.

I know for me I had mostly gone off it, but did not get the full benefits until I also went off all trace gluten, and also eventually discovered other things I was reacting to too--and began to avoid them.

The thing is to learn to trust your own experience. You know your condition better than anyone else. Don't let others' opinions stop you. Just take the precautions and planning you need to take care of yourself to be healthy. For those who insist you eat the wrong things, perhaps its time to consider spend less time with them since obviously your well being may, in all probability, not be on their true agenda. And by all means stick to your guns.

Bea

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Excellent article. Thanks for posting.

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Thank you everyone for your comments and support. Well that will be the LAST time that I even attempt to eat gluten in hopes of proving myself to others. I have proven it to myself and my fiance believes and sees the pain I go through. That is the only person that matters to me and if he can see it and believes in not "crazy" than that's good enough for me. I haven't had a reaction this bad in a while and its enough for me to give it up for good. Thank you again for the support and comments. Y'all really helped me realize that its not about pleasing others (because no one will ever understand) its what I have to do for my health.

Katie<3

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Thank you everyone for your comments and support. Well that will be the LAST time that I even attempt to eat gluten in hopes of proving myself to others. I have proven it to myself and my fiance believes and sees the pain I go through. That is the only person that matters to me and if he can see it and believes in not "crazy" than that's good enough for me. I haven't had a reaction this bad in a while and its enough for me to give it up for good. Thank you again for the support and comments. Y'all really helped me realize that its not about pleasing others (because no one will ever understand) its what I have to do for my health.

Katie<3

Good luck to you Katie! I am betting you will soon start feeling better and better.

Meanwhile you might want to invest in some enterically coated probiotics to help you feel better sooner. L-glultamine also helps out a lot of people by soothing and healing the lining of the gut.

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I wish you the best too, Katie, and am only piping in to mention that there are some precautions with L-Glutamine and celiac disease, diagnosed or undiagnosed. That may be something you want to check out in conjunction with protecting your liver.

The gluten-free diet won't hurt you, and could very well help you very much.

The only thing I'm saying is that free advice is worth what you pay for it and you might want to shy away from taking L-Glutamine (because it gave me bad liver lab values after taking it daily for six months). That could just be me though. And I like Bea, really do, but she doesn't seen to consistently have back up documentation for why she's recommending something.

Wish you well, I have a niece named Katie, just looking after you. I'm not sure if this is a good source. but it made sense to me. http://www.livestrong.com/article/536927-does-l-glutamine-cause-liver-problems/ Celiac is an autoimmune disease.

Funny I bought the supplement only because my dear old dog responded so well to it...better than she did on steroids.

That's just my take on the subject, I could be wrong, but I feel strongly enough about it to write.

M

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I wish you the best too, Katie, and am only piping in to mention that there are some precautions with L-Glutamine and celiac disease, diagnosed or undiagnosed. That may be something you want to check out in conjunction with protecting your liver.

The gluten-free diet won't hurt you, and could very well help you very much.

The only thing I'm saying is that free advice is worth what you pay for it and you might want to shy away from taking L-Glutamine (because it gave me bad liver lab values after taking it daily for six months). That could just be me though. And I like Bea, really do, but she doesn't seen to consistently have back up documentation for why she's recommending something.

Wish you well, I have a niece named Katie, just looking after you. I'm not sure if this is a good source. but it made sense to me. http://www.livestrong.com/article/536927-does-l-glutamine-cause-liver-problems/ Celiac is an autoimmune disease.

Funny I bought the supplement only because my dear old dog responded so well to it...better than she did on steroids.

That's just my take on the subject, I could be wrong, but I feel strongly enough about it to write.

M

Hi Marilyn,

You bring up a good point. Most anything you take has to be taken with consideration and observation. Everyone is a little different so that needs to be respected.

I have been helped by L-Glutamine, as have many here. Some swear by it. A good friend of mine was recommended by his naturopath to use it regularly to help heal the lining of his intestines. My friend also has celiac.

However, besides advanced liver problems, if you have a tendency towards blood sugar problems, I have read its best not to use it too much. Especially if you have or tend towards diabetes. Here's a discussion of the pros and cons on that subject: http://www.livestrong.com/article/533722-glutamine-for-diabetes/

I have low blood sugar, so I only use L-glutamine when I really need it, as in having been glutened. It helps shorten the time to heal and is very soothing so I think its a worthwhile thing to have in one's arsenal. But like you say, perhaps its not for everyone.

Nevertheless, if one does not have these problems, using L glutamine for a while should be OK. I do agree that using it continuously even for 2 months however is probably not wise without a doctor's supervision especially since we do have an autoimmune disease as you well noted.

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I use Glutamine everyday. I lift weights and I found it helped with that first. I than ended up taking it more when I found out it helped with Celiacs. It does help me I think and I actually ran out of it so im in need of a bottle. As for my lab values, all are great. Except I am hypoglycemic also but I have found it only helps me. I am interested in the articles you both posted and am anxious to read them.

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I use Glutamine everyday. I lift weights and I found it helped with that first. I than ended up taking it more when I found out it helped with Celiacs. It does help me I think and I actually ran out of it so im in need of a bottle. As for my lab values, all are great. Except I am hypoglycemic also but I have found it only helps me. I am interested in the articles you both posted and am anxious to read them.

I suggest you look at this old thread on the good and the bad concerning L-glutamine. It was a heads up for me too. Especially about it not being good for those with hypoglycemia. The main thing is (assuming they have their facts right) that it seems to be good for short term use, no more than two months at a time (at most--like I recalled somehow), or it will stop being good for one, much like other amino acids. Athletes get to use it a bit more --perhaps (?):

No mention here however of possible problems with auto immune conditions, like the article I submitted above suggests. Maybe that research came later?? I will keep looking meanwhile... And ask my bf to help perhaps since he is good with researching medical stuff.

Meanwhile, here's an article on Buzzle that basically suggests too much of even a good thing is not that great. Moderation in all things would be the "buzz" word. Also avoid if liver or kidney problems (like me actually historically and always potentially), Reyes syndrome etc.:

http://www.buzzle.com/articles/glutamine-side-effects.html

No mention here at Buzzle of blood sugar issues being a no no either, but it was mentioned elsewhere by others--and down below in the naturopathic site I list.

Main thing though overall it is safe according the Wikipedea, so saith my dear bf. But I still am of the opinion that its best to go off it for a while now and then just to be on the safe side.

I still think its often great in an emergency like after one has been CC'd.

This online naturopath site seems to agree overall that its use is a mix of good and bad:

http://www.digitalnaturopath.com/treat/T73593.html

Be nice to actually see the evidence listed however... Probably one would have to sift through Pub Med for that.

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Hi Katie,

Don't feel silly. I went for years feeling like crap, always knowing something was wrong, but doctor's and their stupid tests could never find anything out of the ordinary. Since my daughters have been diagnosed, I have come to realize that gluten was also MY problem.

Yes, I was called a hypochondriac, I was told that I was just trying to get attention - both behind my back and to my face. Ex-friends, family members, coworkers - they all said the same thing.

Stick to your guns. Only YOU know how you feel and what makes you feel that way. Do what you have to do to take care of yourself.

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I use Glutamine everyday. I lift weights and I found it helped with that first. I than ended up taking it more when I found out it helped with Celiacs. It does help me I think and I actually ran out of it so im in need of a bottle. As for my lab values, all are great. Except I am hypoglycemic also but I have found it only helps me. I am interested in the articles you both posted and am anxious to read them.

I had a visit with my PCP today and she want's to run more blood work on me. I brought the L-Glutamine bottle with me and told her it had been connected with abnormal liver blood tests, but that I'd stopped taking it and wanted to wait a few months before re-testing. She told me in 15 years she'd never seen a connection and that I could have Hepatitis with those lab results. I stuck to my guns, rightly or wrongly, and wouldn't agree to the blood draw today. I don't have history of habits/behavior that would lead to Hepatitis or Liver Disease.

After I left my Dr's office visit, I googled L-Glutamine and Liver disease and came up with a 10 page report from England that you may find interesting:

1 TOX/2008/35 COMMITTEE ON TOXICITY OF CHEMICALS ...

cot.food.gov.uk/pdfs/tox200835.pdf

I've had some wonky blood test results, but never had skewed results on a basic blood test. I can't say for certain it's from taking that supplement, but can say for certain I'm not taking it anymore.

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I had a visit with my PCP today and she want's to run more blood work on me. I brought the L-Glutamine bottle with me and told her it had been connected with abnormal liver blood tests, but that I'd stopped taking it and wanted to wait a few months before re-testing. She told me in 15 years she'd never seen a connection and that I could have Hepatitis with those lab results. I stuck to my guns, rightly or wrongly, and wouldn't agree to the blood draw today. I don't have history of habits/behavior that would lead to Hepatitis or Liver Disease.

After I left my Dr's office visit, I googled L-Glutamine and Liver disease and came up with a 10 page report from England that you may find interesting:

1 TOX/2008/35 COMMITTEE ON TOXICITY OF CHEMICALS ...

cot.food.gov.uk/pdfs/tox200835.pdf

I've had some wonky blood test results, but never had skewed results on a basic blood test. I can't say for certain it's from taking that supplement, but can say for certain I'm not taking it anymore.

Not to make you feel whatever--please note that the article you referred us to is about chondroitin and glucosamine sulfate. Not L-glutamine...

Nevertheless, whereas many thought there were no problems with it whatever, apparently that just ain't true. Too much of even a good thing, even if it just means taking it for too long, is still too much.

For me though, like it appears to be for you for your liver values, I was right to go off it. I do have a history of kidney problems and food allergies up the yin yang, especially to dyes, as well as hypoglycemia, which is a real no no for L-glutamine it appears.

Its too bad, since I did like how it made me feel, at least for a while. For most I think its OK though for a few days if one has just been glutened, or one has started a real work out program you aren't used to yet.

Meanwhile I am glad this discussion has helped you deepen an important clue for your health concerning the pros and cons of taking L-glutamine or not.

I want to point out though that many here with celiac do have damaged livers simply because of the toxic overload due to ourvilli being damaged and thus causing leaky gut. This in turn makes seemingly innocuous food substances like oil, proteins and carbohydrates etc. turn into foreign invaders that we react to. Downwind the liver has to clean upthemess and often gets clogged up and overloaded.

It might be wise to eat less animal fat for now for instance to take the stress off your liver. I find it is helping me after discovering my liver and gall bladder were stressed this last fall. It has helped to use a variety of detox herbs as well as eat more azuki and other beans and avoid butter and eggs and most meat except fish. I also now eat apples and pears most every day since theliver apparently loves them. The pectin in them helps detox the liver too.

After three months of that diet without meat except for fish, I now can eat chicken without the fat, and often cook a bit in with my beans and veggies. The azuki beans actually help dissolve the built up cholesterol in the liver and gall bladder. You can find t hem at most Asian stores.

By soaking the beans a good 24 to 48 hours, changing the water several times, and then bringing the new water to a boil and changing it another 3 times (boiling each time after and then straining the hot water out), before cooking the beans the final couple of hours, it helps get rid of the indigestible carbohydrate. I never thought I could eat beans before but find the azuki beans easy to digest. You might not need to go to such lengths, however I really seem to need to. If eaten with brown rice it increases the protein content of the beans according to many sources.

If you want documentation, please let me know. However you can Google a lot of this information yourself... Including the bit about the healing properties of azuki beans as well as the fact many celiacs have problems with their liver and gall bladder. The why of it is a little harder to trace, but out there if you do some sleuthing. I looked all this up with the help of my bf (who has more official medical training than I) due to my own condition and did not necessarily keep track of all the urls, though do have some.

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Thank you for the kind and informative post. I appreciate it!! :):)

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Thank you for the kind and informative post. I appreciate it!! :):)

Glad to be of help. I figure we are all in this together.

I wish all this wasn't so hard to figure out. Its like there is the information out there but its all in distinct parts. It needs to be put together into whole systems to see how it all interrelates for it really to be useful or understandable by us lay people. We need to know because this is our health and well being at stake after all...not to speak of the added stress our ill health brings to our families, friends and communities. Its not just some abstract idea or other or a neat way to make money (for the pharmas for instance or the big insurance companies or managed corporate health care). .

Bea

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I have a hard time too wondering if I'm just crazy. People ask questions a lot and sometimes that throws me off like will i always have to answer questions my whole life ? Then a part of me thinks I'd rather them ask than not care at all. I'm not sure if my family believed me at first either. Some have said that so many things we eat are bad for us and can give us cancer etc. so why cut out gluten? But I know it's their opinion and not mine and I know more about it than they do. I have to keep perspective.

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Hi Katie,

Don't feel silly. I went for years feeling like crap, always knowing something was wrong, but doctor's and their stupid tests could never find anything out of the ordinary. Since my daughters have been diagnosed, I have come to realize that gluten was also MY problem.

Yes, I was called a hypochondriac, I was told that I was just trying to get attention - both behind my back and to my face. Ex-friends, family members, coworkers - they all said the same thing.

Stick to your guns. Only YOU know how you feel and what makes you feel that way. Do what you have to do to take care of yourself.

Thank you! It makes me feel so much better that I am not the only one out there! Really is a huge relief to me.

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Thank you for the kind and informative post. I appreciate it!! :):)

And P.S. I guess browsing on a smart phone in the doctors office parking lot, then posting it to the forum is not really smart. :D

I found out I have Lupus yesterday, so that could also explain my wonky liver values. The dx was a pathology report from a skin biopsy of a weird scar on my face.

Meantime, I'm eating an apple a day and freaking out a little bit. :lol:

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Marilyn - sorry to hear about your lupus diagnosis. Has the doc decided which of the various manifestations it is? I do hope it is one of the milder, less troublesome types.

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Thanks, Gail. xoxoxo

It's Discoid.

Funny story. Over a year ago I was researching my symptoms and figured I had Lupus.

DP showed up with a 25 cent book from the library used book shop: "Lupus Q&A Everything You Need to Know".

The way I remember it is that he gave me the book because two of my girlfriends have Lupus and he thought I'd want to learn more. I thumbed through it and told him to donate it back to the library, I probably wouldn't read it.

He remembers that I told him I thought maybe I had Lupus (after exhaustive internet searching) so when he saw the book he bought it. He says when he brought it home, I told him I didn't have that, had been tested, donate it back to the library.

The funny thing is that yesterday I told him it was too bad that we didn't still have that book he bought. He produced it, and there is one mark in the book. Discoid Lupus has a pink highlighter on it. So, yes, thanks to the 25 cent book, we know I have a mild form of lupus. (Even though I want to attack my left lower ear with a dinner fork to scratch it! :) )

Do you have it?

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    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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