LauraTX

My I ask how you were exposed to high levels of copper?  I'm an inorganic chemist and have worked with all sorts of metals in the lab, so that's why I ask.

The person you are questioning has already said they have the symptoms of wilsons disease, just not the currently known genetic mutation.  We all consume copper in our everyday diets, which usually isn't a problem unless you have a problem eliminating it, like they do.  So they likely did not have an overexposure, just a natural buildup over time without the output.

Years ago we actually had a scare with my husband of possibly having wilsons disease, turned out to just be arthritic knees (yay for overreacting but glad to get it eliminated I guess) and they immediately had him go on a low copper diet.  To me at the time it was eliminating a bunch of seemingly random dark colored foods, you can look it up more info at Open Original Shared Link.

Hi Raisin,

Sometimes with issues like these where you are torn between actions and having problems with self control, talking with a professional can help.  A psychologist, social worker, or therapist can talk through these issues with you and won't prescribe meds like a psychiatrist does.  If you lack health insurance or the financial resources for this, there are places that do these at a reduced or no cost.  Sometimes they are through churches or universities, or just individual practitioners that slot time for those who can't pay.  In my local area there is a seminary that also has a social work school and they have their last year masters students do free sessions.  If you aren't sure where to find a place like this, you can do an internet search for like, "free counseling -city-" or find your local MHMR office (usually ran by local or state govt) and they will be able to point you in the right direction.

When people see you "cheat" on your diet they are definitely going to take you less seriously.  If you want to do a kind of a "reset point"  just tell the people you are around and who display these behaviors, that you have still been having problems with your DH rash, and after talking with your doctor you have realized you should be a lot more strict than you have.  They don't need to know you didn't see a doctor-just a way to get them off your back. 

Just stick with it for at least a good 6 months before you give it up.  With a celiac there are a lot of ups and downs as the gut heals.  I hope going gluten-free gives you relief in the long term.  Read through the forums here and make sure you are being super strict with it, because if gluten is the problem it is an all or nothing kind of situation... one teeny tiny speck of gluten will make your gluten-free diet futile.  Also, if the gluten-free diet does continue to improve symptoms, a good term to use would be to say you have a gluten intolerance.  

If you see your immunologist before I find one maybe you could ask him what the opposite levels mean of IGA. I am sure the Hematologist is going to discharge me because he acted so shocked to why I was even there but I guess my other Doctor just wanted me to be sure; or like he said he had no idea what that meant.

Oh, I will do that!  I should see him at my next IVIG infusion on the 17th.  Sometimes I don't get to see him but I think I didn't last time so I should see him this time definitely.  I am kind of like you, I can't just let things lie if something may possibly be wrong.  That led to me finally getting everything properly diagnosed so I could treat the problem, not just the sickly symptoms I had.  Even if it is likely nothing I would do the same!  And of course seeing an allergy specialist will help you get your allergy stuff possibly under better control so there could be a plus.

If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology.  If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI)  who has FAAAAI after their name.  The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached.  Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort.  If it truly is nothing, they will be the person to know.

I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system.  I don't know what it means to have too much, though.  But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.

I have lupus, celiac, and common variable immunodeficiency.  For the lupus I take plaquenil and Methotrexate. Plaquenil is generally well tolerated with few immediate side effects, the most common is maybe some constipation.  It takes a while to work.  Also you may want to see your eye doctor within a few months of starting it so they can do a good baseline exam.  It rarely can have a long term side effect of affecting your eyes.  So getting a good exam now will help them be able to monitor better.

They may start you on more meds, and just have patience and take things as they come.  Don't push yourself too hard, just do what you are able to do each day.  I personally avoid lupus support groups and forums because a lot of it is incredibly depressing.  I just try to be grateful for what I can do and what I do have, can't do anything else really or you will be depressed all day.  If you feel like you are getting too bummed out about it, talking to a professional will help.  I have really learned to not tunnel focus on my illnesses, sometimes it is hard on bad days, but in general being positive about what is there helps a lot.

Welcome!

I second what Karen said.  Oxycontin and a lot of pain meds can be very harsh on your stomach and many people cannot tolerate them on an empty stomach.  If you find that the one you have now doesn't have gluten, you may want to take it with more solid foods like gluten-free crackers or pretzels, whatever suits your fancy, and see if that helps.  As your intestines heal up from being gluten-free, you may have increased absorption of everything, including your pain meds.  With something super potent the difference may be pretty noticeable or more quick to come about, possibly making you think you have brain fog when they really kick in.  Also, you may want to pay close attention to how dairy makes you feel... try eating the same meal of yogurt and coffee on an empty stomach without the pain meds and see if the same thing happens.

To find out whether or not your current pain meds are gluten-free, check out the prescription bottle.  Somewhere on there or maybe the papers that come with it, is a manufacturer name.  Do an internet search and find their website and a phone number and give them a call.  Usually they can give you an answer right away.  Like Karen said, it is not common for gluten to be in drugs, and a lot of them are not certified, but just don't have any gluten ingredients, and that is okay.  

I really hope you do start to see some improvement with your neuro symptoms after going gluten-free!  It may take a while so just stick to the diet as strictly as you can, avoid eating out and such for now.  You also may want to limit your dairy intake for the first three months of healing, especially if your biopsy showed bad damage.  You seemed to have read a lot already, which is awesome, and if you have any more questions or need help feel free to ask!

I rarely wear makeup, like once or twice a year.  But when I do I use the Bare Minerals makeup, the ones I use are gluten-free since it is all powdery and definitely gets in my mouth.  Lipstick I always read ingredients on to make sure it is gluten-free and sometimes the label isn't visible in the store or under the shrinkwrap... but right now I have a cheapo NYC lipstick that has no gluten ingredients.  If you sleep in your makeup (which you aren't supposed to do but a lot of people still do), it should probably all be gluten-free since you are rubbing it all over your face in your sleep. But like Karen said, you just have to think about the chances of it getting into your mouth and how comfortable you feel.

Don't forget, guys, that usually there is more than one generic manufacturer of a drug.  So if you can include the manufacturer that you know to be gluten-free, it will be more helpful for the OP. 

No Problem, Spirit.

Jamie, if you need help finding a new doctor, you can browse through the doctors section and post if you don't see one for your area.  Also if your local area has a Gluten Intolerance group or something of the like, those people may be able to point you to who they went to.

I have celiac and lupus and mentioned to my rheumatologist that when I an PMSing everything just gets a little worse.  He said inflammation increases at that time and especially with lupus patients (lupus is an inflammatory disease) that is not uncommon.

PCOS is Polycystic Ovary Syndrome.  First result on google is a good rundown of it:  Open Original Shared Link

I agree with Kareng.  People pulling up and replying to posts from 8 years ago shows to me that the category wouldn't be noticed and potentially spread information about non-celiac levels of seriousness about the diet as true to celiacs- it is named celiac.com.  I think welcoming non-serious fad dieters on here would chase people away who really need the forum for celiac and NCGI.  If someone is just a diabetic or just paleo they are not following a gluten free diet, they are eating low carb/no carb and that just happens to eliminate most gluten.  I would LOVE to be able to take the burger off the bun, but what I have is a step above that in seriousness and I like this forum because that is wholly understood by anyone who has been around for a while.

Any time someone comes on here asking about things that are not celiac related and admits to not having celiac or not caring about it, they pretty much get nicely ran off and told we only know about celiac, not whatever other disease.  I don't think it would be right for celiac members to be opening themselves up to give advice to people with other health conditions that we have not had the experience of becoming our own personal experts on like our own ailments.  I think the Related Disorders category covers any overlapping issues well.

Lastly, if someone wants to non-seriously eat gluten-free, there is a TON of information on the internet nowadays for them to peruse.  If they are going to have extensive questions on the issue, then they probably do take it seriously and would be welcomed here. But like Karen said, anyone who thinks they may improve/does improve on a gluten-free diet really should be tested for Celiac anyways, and that is just the hard truth.

TL;DR:  Please don't make me comingle with crazies who eat gluten-free misguidedly, I think it will drive out the Celiacs who need this forum.

Glad you were able to get some answers Deekle  Time to let yourself heal up!

Thank you for spreading truthful information.

A1 and Blue Bonnet are gluten-free, I use them.  

One of the first things I did when diagnosed was I got a notebook and made a list of all the products I commonly use and keep in my fridge and pantry, minus the obviously gluten containing ones.  I went down the list and called manufacturers and did internet searches and wrote down my results.  My first call was to Dr. Pepper to see if that was gluten free, god I was so relieved when she said it was!! (At the time all Dr Pepper and Snapple products were gluten-free minus one obscure bloody mary mix that she said was prominently labeled as having wheat)

Another thing that helped me out greatly was a gluten free grocery guide.  There are two prominent ones, the one I use is Ceceliad Marketplace.  It has a list of gluten-free stuff by category like lunch meat, sauces, etc. And really helped me at the start, definitely worth the 20 bucks or so because they do the research for you every 2 years, and post updates on their website.  Open Original Shared Link

Of course, always read every label, every time, because I have seen things get slipped in there.  I do it as I grocery shop, just scan through the back to make sure nothing has changed.  Of course it is easier with some brands like classico sauces, and bush's beans that actually put "Gluten Free" on the back, and I will buy those over something I have to look up.  Also it is helpful to learn the parent companies and their labeling practices like mentioned by others above me.  

Lastly, while you are getting used to being gluten-free, it is a good idea to avoid restaurants for a while to give your gut a chance to heal up, especially if your damage was severe.  Feel free to look around and ask any questions, and do pay attention to dates on posts if you do a search for a certain item, sometimes the info can be years old and possibly not good.  Welcome!

For those of you lucky enough to have a See's Candy near you, in January of this year they changed their allergen statement to EVERYTHING IS GLUTEN FREE YESSSS!  If you can't tell, I am excited about that.  Used to be like just one or two things like candy sticks and some of the decoration on easter eggs had gluten, but not anymore, they listened to their customers!!!  If you want to splurge on yourself it is darn worth it.  Hopefully I can get out to the store near me before easter to get one of their big eggs because those are the best. They have decent shipping online, too.  And some of their basic stuff is in department stores like Dillards (in the south).  

Open Original Shared Link

most of the modified food starch is not labeled as containing wheat.

That is under the assumption that it is made from wheat, and many times it is not.

I posted the link so people would read and fully understand everything fully.  It worked, yay.  Also the page I linked to is two years old and some things have changed since then for the better.

When you have to eat gluten free, one of the first things you have to comprehend is that there is never such a thing as a blanket statement. Always check yourself.  Also, most companies have their own labeling practices, which usually fall under a giant parent company, and will still voluntarily label USDA regulated items with the same thoroughness as FDA regulated items.  It is good to get to know these parent companies.  Then there is also the grey area of where FDA regulation ends and USDA regulation begins on certain types of products for which the companies will follow regulations of both out of fear or regulatory action, which I won't bore you with.

Ahh good idea  I am definitely adding this to my recipes to try!

I made "Paleo Chocolate Chip Cookies" from gluten free on a shoestring: Open Original Shared Link

 

I was really impressed!! I used date sugar since that is what I had on hand... it was perfect. Just the right balance of sweet and a bit of salt. I will be making them again. I bought some Almond flour from Costco last weekend. I was shocked they had the Honeyville brand. Snatched a bag up since otherwise I would have to order it online.

 

Really hard to only eat 2 last night.

Oooh those look really good!  If I subbed in regular sugar would it be more/less sweet and need the amount adjusted?

You may want to try SHEA Butter.

Ahhh shea butter.  I think I may be the only person in the US who is allergic to it, lol.  I have accidentally been exposed many times... twice at the salon (my hair looked great but my face was covered in rash) and in lotion tissues.  When I first discovered it, I tried an eczema lotion that cleared my eczema but then all these little bumps showed up.... LOL.   It is slower to form for me, thankfully, but also slow to go away.  It is in everything nowadays... the past 4 years or so it has become the cool thing to add to beauty products, so I have to read labels like a maniac.  And don't trust salon professionals to do it for you, even though it sounds simple. Because they will fail and you will be itchy. 

Now that I occasionally use coconut oil I have been wondering if I may accidentally expose someone to it as an allergen when I am in public.  So I wash it off my hands and use my regular hand lotion.  My sister is "allergic" to coconut and almonds according to her, even though one day I was at her house and pulled out all the things in her pantry that contained said items.  *eyeroll*  She wouldn't let me throw them away because she still wanted to eat them.  Apparently almonds do make her lips swell/tingle, I told her she is possibly one exposure away from that developing into full anaphylaxis.  Bless her heart.

No problem!  From what  I understand, it used to not be that way.  Yay for us!

If you are having terrible pain in your intestines in the same spot, it is time to go see your GI doctor and get it properly evaluated for your safety.

Remember non-allergic basically doesn't mean anything.  From the description it sounds like it likely is gluten-free, but it is still worth writing the company to ask.

You can do a test spot on your skin.. I will usually do a spot on one cheek and on my upper arm to see what happens and wait a day.  I second the vitamin E oil thing, works nicely for scarring, too, but it doesn't thin out as well as coconut oil.  Coconut oil works great for my eczema, and much much cheaper than the expensive creams.