Add me to the hug list, Icelandgirl! But when I read what you said about your mother, it might help to remember that many times, health issues can be familial. Cysts seem to be one of those things. I know mothers and daughters that have had cyst problems but they were never cancerous. Just pesky cysts. So, if your mother has had this experience and everything was fine every time, dwell on that because it just might be you are like her and everything will BE FINE! I know you will be really worried because so wouldn't anyone else but concentrate on the positive, if you can!
I will now turn on my positive and healing thoughts beam to you and await that type of result on Monday.
The reason many have not heard of this is because it is totally untrue. I would not rely on information from an "experienced immunologist" unless they also have Celiac Disease and have done their homework. Even then, we have diagnosed Celiacs come on this board and they believe all the urban myths out there that have no basis in reality.
Most wines are processed in stainless steel containers and those which are done in oak barrels (probably more so in Europe) have had testing done on the finished product, with levels that are not enough to cause a problem even in sensitive celiacs. This topic has been discussed at length here and I lknow someone posted recently the info on this. I am extremely sensitvie, drink wine every day, and do not have any troubles from it. Most other Celiacs will tell you the same thing.
The fining process has been discussed also and I am hoping someone will post further info as I don't have time to look for it right now. I will, but not right now. I am at work but wanted to post something quick because this topic is getting old and the info is just wrong. There is no gluten in wine. Headaches usually come from sulfites and yes, BarryC,
we celiacs have sensitive guts anyway so if you have not healed fully, wine could be a problem because it is harsh on the GI tract. I could not drink anything for about 3 years after diagnosis but now? Love my wine!
I would not get too worried about this and yes, how easy for me to say that, isn't it? Mammography has a high rate of false positives, especially if your breast tissue is dense. I know many women who have had this experience and it was nothing more than calcifications. There are also a number of things that are benign in nature that will show up on one and you won't know until they do this further testing. I am sorry you are going through this because I am sure it is a very scary thing to hear. Deep breaths, deep breaths.......Get the other stuff done ASAP because you will be able to relax a bit more when they figure it all out. But many women have that second call and it proves to be nothing serious. I would not lie to you.
I still have to answer your thyroid post but my mother-in-law is here for a visit and I am busy. I will post a response soon!
You don't have to go to a doctor to be tested for insufficiency. If you have a problem digesting fats, you will know it. I always suggest taking OTC digestive enzymes because they help tremendously. I have been gluten-free almost a decade and this year, stopped using them to see what would happen. I was using them far less frequently than when first diagnosed. Low and behold.......I don't need them anymore. I am eating more foods than ever, a completely normal diet and everything goes through as it should, with no more issues eating fats! This particular problem takes quite awhile to correct as fats as just so hard to digest.
I would imagine that most people do not get hair dye in their mouths because it wouldn't be any potential gluten in it that would worry me. Hydrogen peroxide is not something to
ever get in your mouth and the other chemicals, if ingested, might land you in the ER or placing a call to the poison center. So, if people think they are being glutened by their hair dye without landing in the ER, I think the odds of a pole shift are much greater than being glutened from it. If you are ingesting enough of a wheat filled hair dye to feel sick with celiac symptoms, it is more likely from the chemicals and I would stop doing that or go to the hospital.
The second issue is that any gluten component from a shampoo or hair dye might be from tocopherols. Here is some reading on that subject....http://www.glutenfre...wheat-germ-oil/. Tricia Thompson is a very trusted source!
Jergens is a very safe product. I have been using it for years as it is the BEST moisturizer out there for hands and body. Never had a problem and I am a very sensitive Celiac.
Ditto for the Chanel foundation. I have used it and it's a really nice foundation. I do not screen make-up because I do not have a topical allergy to wheat and I do not eat make-up. Well....except lipstick, of course! That is always screened, for obvious reasons.
i was very sick before being diagnosed, too. went to all kinds of doctors and kept adding foods to my 'no-no' list until i had hardly anything left to eat. because they *were* all bothering me because my intestines were so damaged. by cutting out the gluten, it has allowed my gut to heal and now i can eat many things that i previously couldn't. like gem, i was at death's door, so it took a long time to heal to the point of 'normal' digestion. i figure if it took that long (25 years) to do all that damage, i better give it some time to heal. you may not have as many food allergies and sensitivities as you think if you have celiac and your gut is damaged and inflamed.
i do not miss the migraines. i have not had one in years and i don't catch every darn flu bug and virus that's going around. i think i've only been sick once since dx. most of the time, i'm the well person in a sea of sickies (i watch alot of kids lolz) and that was *never* the norm for me. if you have celiac, being gluten free will save your life and save your quality of life. good luck and good healing to you
lolz - alright, already i don't know what kaniwa is that was just my best guess
Good advice, Arlene!!!!!! You are so smaht! It's nice to be able to think without the brain on gluten thing!
As for the IBS diagnosis, Cheryl......IBS is not a diagnosis so when they tell you that your bowel is irritated, the best thing to fire back with is that you know that and want to know why! Otherwise they do what they do.......symptom treat and you never get better. Please try a strict gluten-free diet for at least 6 months. Arlene is correct......that may be the underlying cause of why you have so many food issues. It sounds like you are one of us!
One other question.....do you take many meds for your health problems? If you do, some of them may have interfered with the blood testing.
Cheryl........here is an article that may help explain some of the genetic stuff but the fact is, you have a predisposition for Celiac. Without any Celiac genes, the odds go way down, almost to zero. https://www.questdia...c=TS_HLA_Celiac
You have Sjogren's (so do I), osteoporosis, lupus, low WBC (so do I, and that's common for someone with multiple autoimmune diseases), thyroid issues (I have Hashi's), positive ANA ( which is not indicative of anything other to say you have general inflammation in your body...and so do I), liver problems........you get the picture, I hope, of what I am trying to say. With all of these health problems and a positive Celiac gene, why is it that you feel that you cannot change your diet, if testing has been inconclusive? That can happen and it was probably because they didn't test correctly or, as you stated, you were off wheat and that may have thrown the test. If your life has been altered so drastically that you cannot work, why do you feel it is hard to change your diet to see if this is the problem? It really is not hard at all to follow a gluten-free diet, just inconvenient at times.
I was sick as sick is when I was diagnosed. I had to get within weeks of dying before I figured it out and asked for the blood work to be done. Once I went gluten-free, my recovery was nothing short of a miracle...but it did take a total of 3 years for complete recovery. I was 46 years old at the time. You will never get the answers you are looking for at this point from the medical establishment. This is nothing new. But with everything in your medical history pointing towards Celiac, and the gene testing to back it up, you most likely will die if you do not start the diet and stick with it from now on. I think down the road you will see this is true, once you start feeling better. BTW,,,my ANA was sky high 9 years ago and it has slowly been coming down the longer I am gluten-free, even with 3 other AI diseases to boot. It is not normal but a world of difference better. I feel normal and healthy.
SIBO does not cause all these other AI problems you have but Celiac does. SIBO is probably the result of long undiagnosed Celiac. Time to start the diet and move on and heal!
Havanesemom, I would send some info back to corporate asking them to change their practices. Gross.
I happen to agree with Peter on this one. But I think the worry has nothing to do with gluten. That stretches into the realm of unreasonable worry. I do not wash produce because I am paranoid that it has gluten smeared all over the surface but because of bacteria and germs. There are people out there who I wouldn't let touch the door handle on my car, let alone the food I eat. Many people have handled melons on their route to the food store and it makes sense to wash them before cutting from a germy viewpoint only. But if you think you can take a gluten hit from unwashed melons.........put the order in for the plastic bubble soon!
When you shower if there is wheat in your hair products you will be surprised at how easily it gets in your mouth as it washes down your face. And it will stay on your hands. Gluten is sticky binding stuff.
You are right....we could go round and round with this subject but Irishheart is correct. Unless you have a wheat allergy, on top of celiac, or are extremely careless about drinking your products, there is no need to use gluten-free skin and hair products. You cannot argue with science and common sense. However, if it makes you feel more comfortable doing so, then by all means use gluten-free everything. That way, you can have your shampoo and drink it too!; )An added note......gluten will not stay on your hands if you wash them and rinse well. If what you say were true, we would never heal and have to live in a bubble.This is the type of talk that keeps newbies afraid and celiac myths alive, when they should have died a natural death.
So... if you are still having symptoms after going gluten free, give the products thing a try. I saw many people on here who were adamant that they did not, needed not, would not change their beauty products, but they were constantly whining about lingering symptoms. I remember one guy in particular, he who will not be named, who was miserable, and complaining every single day about how nothing he did would make him feel better. But he would not, no never, get rid of his favorite wheat containing shampoo. Last I saw him, he was still sick and still loving his soft silky wheat filled hair.
Your friend could be still symptomatic for many reasons so don't assume it's his shampoo.
My husband also uses gluten free products. He washes his face and puts on his manly dude lotion. Then I kiss his cheek and whammo... big D, if there is wheat in there. Or he washes his hair with gluten shampoo and conditioner, then lays next to me on the pillow. His hair brushes past my face and there you go... big D again.
I'm sorry but this is a big eye roll moment. You become glutened by your husband's hair brushing past your face??????? Does he not rinse his hair after washing?
Unless you are totally free of symptoms, feel amazing and are 100% certain you are doing great in your gut, you are playing with fire using products that contain gluten (just about always in the form of wheat this or that from what I've found.)
This is how I am doing after 9 years gluten-free and I do not screen anything except hand lotion and lipstick. I am about as sensitive as a celiac can get and suffer horribly when glutened so I guess I am the miracle woman in that I have survived and flourished on the gluten-free diet for so long, without becoming paranoid about wheat everywhere.
I don't care what some guide says or a book says. They aren't you. They don't have to spend hours on the toilet with you or deal with the gut pain. Tread carefully with the products because it just might be the difference between better and great for you. Celiacs have been given bad advice from doctors and experts since the dawn of time, so do what you need to do in order to be well. It is worth an hour of your time in an Ulta reading labels or a couple of hours in the aisles at Walmart for your well being.
It's hard for me to be critical because I am so happy you are doing so well. But in order for a person to feel drastically better after eliminating personal care products, they would have had to be ingesting them into their guts for a Celiac reaction to take place and that is established science.Do you really want to be eating your shampoo and conditioner?I would be more concerned about eating shampoo long term. The guidelines that are given are good science and not bad advice from doctors. I would agree with your advice if you are the person who stands in the shower and lets soapy water run down your face all the time but many poeple do not do this so the risk is almost zero if you don't. I just do not want people to get the wrong idea and think you will not heal and be well again if using shampoo with a wheat componenet to it because that is just not true.Those things are not meant to be ingested and it isn't all because of gluten.
Keep the faith, Ladies. Keep learning all you can because that helps you to understand the process of healing. I wish it could be shortened but healing occurs whether you feel good or not. It just takes awhile for it all to come together and then you feel better.
My husband came home from work one day and told me all about a nutritionist who have given a talk a seminar that he attended at work that day. We both work for a health and wellness company who sponsored the seminar. He told me that the nutritionist clearly stated that M & M's contained gluten. At first I was in a bit of a panic. Had I read the label wrong? I looked again and I'm like, I don't know what she thinks gluten is but there are none in my M & M's
I wish there was gluten in M & M's...those things are so addictive, ya can't eat just one .......bag!
I have been diagnosed in February this year after being very sick for about 8 year but since last year April i started bleeding from my rectum. Doctors could not give me a proper explanation and i also have a pain in my right side more or less in the area of your gallbladder. They could not tell me what it was and after i went gluten free in Feb the pain subsided a bit but is back again. The gastroenteroligist seems to think it is my small intestine and related to my celiac. I also experience shortness of breath and fatique. I don't get anxiety attacks but i feel anxious and stressed. I hope you feel better soon and you can google The Gluten-free lie: why celiacs are slowly dying. It is very interesting and helpfull. I really benefited a lot from it.
Renee....that article is pure fear mongering. Most Celiacs are NOT slowly dying but people are free to believe what they want. You do know that Celiac's can certainly have unrelated health issues aside from their Celiac Disease or they could be suffering from additional food intolerances? I went way more than 8 years of being ill and wasn't diagnosed until I was 46 years old. I was about as sick as a person can be at diagnosis. But, over 9 years, I have healed fine and live a perfectly normal life. I know many other Celiacs who have done the same and most of us are older too.
I am very sorry you are having a difficult time but it seems you should be screened for other AI diseases also. Maybe see another doctor because bleeding should not be that difficult to find the cause of. I'm sure the reason you are anxious and stressed is because of all this that you have going on. But if you believe what this article says then it will be difficult to get better with that mindset. Good luck to you!
This is so awesome, Stephanie!!!!!!!!! I finally get to see what the little guy looks like and what great photos they are. The one with Fasano is great.....especially since I have seen the one of Fasano in his bathing suit from the Celiac Convention in Florida. Thanks to Irishheart, that's the image that always comes to mind when I see a photo of our Celiac Doctor God. Ha, Ha!!!!!!
I am so very happy that everything worked out well with DS's food during your stay and if you guys come back, for any reason, I will come into town to meet up with you. You have to come back because I know DS wants to. That's what happens when your kids start traveling.....they like it!