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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.

Need Some Advise And Support
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24 posts in this topic

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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      I can!   Start with hard cheeses, then yogurt/butter, soft cheeses and finally milk/cream.  Start slowly and build.  Give yourself time to get your body to release the enzymes necessary to digest lactose.  Certified gluten-free enzymes for lactose can help the transition.  Lactose free milk and ice cream are helpful too.  Remember, that genetically some of us are predisposed to being lactose intolerant no matter what (e.g. aging, race).   I wish you success!      
    • Gluten free diet, positive celiac screen...what should I eat now?
      Here is a link that explains why you should get tested (completely) for celiac disease: https://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/ As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!   Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.   Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  
    • Itchy skin
      I have DH and itchy skin is a symptom.     Your Dermatologist could write a script for Dapsone, provided you're not allergic to Sulphur.     Expect blood labs to go with using Dapsone.      You need to study everything that goes in your mouth for possible gluten content, including all meds.
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