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Member Since 25 Aug 2006
Offline Last Active Today, 10:33 AM

#927444 How Do You Cope With This Frustrating Disease

Posted by on 14 August 2014 - 12:00 PM

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.

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#927035 Gluten-Free Eggs

Posted by on 10 August 2014 - 04:40 PM

Very nice post, IrishHeart, and I couldn't agree more!    :)

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#926617 Gluten Free Hair Dye

Posted by on 06 August 2014 - 01:49 PM

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!

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#926489 Chanel?

Posted by on 05 August 2014 - 12:32 PM

Ok-then along the same like--Jergen's Lotion says the same thing--their products don't contain gluten but they can't guarantee their suppliers are the same...so ok to use or not?



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.

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#926357 Genetic Testing Results

Posted by on 04 August 2014 - 11:48 AM

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   :o  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.

Just a thought......

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#926320 Genetic Testing Results

Posted by on 04 August 2014 - 08:15 AM

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!

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#925869 Store-Cut Pineapple

Posted by on 31 July 2014 - 07:30 AM

You actually do need to wash the outside of melons.  When you slice a melon, the knife passes material from the skin area onto the cut surface, which goes into your mouth. 






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!  ^_^

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#925790 5 Years Gluten Free- Encouragement For The Newbies

Posted by on 30 July 2014 - 11:38 AM

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.  :rolleyes:   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.



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#924448 When To Give Up On Symptoms Improving On The gluten-free Diet?

Posted by on 19 July 2014 - 02:49 PM

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.
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#924173 Most Ridiculous Gluten Comment I've Heard

Posted by on 17 July 2014 - 11:16 AM

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!  :lol:

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#923463 Anxiety And Bloating Still Happening After Going gluten-free? Help!

Posted by on 10 July 2014 - 11:33 AM



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!

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#923304 Boston- Four Thumbs Up!

Posted by on 09 July 2014 - 10:40 AM

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.    :lol:   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!  ;)  

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#922979 5 Years Gluten Free- Encouragement For The Newbies

Posted by on 07 July 2014 - 08:48 AM

Congratulations on making lemonade out of lemons!  This is what kicking butt and not whining about eating gluten free looks like.  I was exactly the same way, only not as upset when diagnosed because I knew how to cook, so like you, I learned how to make great versions of all my favorite foods.  I was just happy to learn my illness was caused by an actual disease and was not a mental illness, as so many docs insinuated.  The only thing that would make it better is faster healing times but it takes what it takes.


You did a good job, sandsurfgirl!  Pat yourself on the back!  :)

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#922518 Intolerant Of Cane Sugar And Yeast

Posted by on 03 July 2014 - 11:39 AM



Oh, and I was suggesting these steps as an alternative to oral antifungal medications, not an addition. I don't personally like the side effects and risks with antifungal medications except in extreme circumstances. And the yeast withdrawal with those can be drastic.


All in all, the toxicity of Candida is higher for anyone with Celiac than the toxicity of. Candida has been scientifically proven to have a surface protein identical the gliadin and invokes the same immune response. As long as you have Candida overgrowth, you have a constant Celiac reaction occurring.

Oh....this statement is so wrong.  Candida overgrowth and Celiac Disease are 2 very separate things. I would love to see what you can belly up as proof that candida has a surface protein identical to gliadin and invokes the same immune response.  I am well versed in Celiac and candida issues because I did actually have a systemic candida problem, from the fact I went many, many years without knowing I had celiac and it totally messed up my whole GI tract. I successfully treated it by going to a real doctor using the candida diet and those anti-fungals you don't recommend. 


You have to eliminate refined sugars from your diet for a period of time because anyone who bakes knows what happens when you proof yeast with sugar. It multiplies like rabbits.  You can successfully eat a small amount of fruit and use brown rice in the diet but no white foods because they are refined. No fruit juices, just whole fruit and it can't be overripe because the sugar content is higher.  On top of this, an anti-fungal needs to be taken.  I used powdered Nystatin but that was a long time ago and they may have different ones today. Diflucan is not recommended because it has serious side effects that can involve the liver so it is more of a short term anti-fungal treatment for severe cases. People with severe illness like Aids, when there is little immune system left, often have candida problems that can become life threatening. Their immune system can no longer keep things in check.  This is when they use DiFlucan.


You may or may not experience candida die off and that resembles the flu.  Yes, you will feel like dog pooh for a week or 2 but as an adult, suck it up and deal with it for the long term benefit you will receive.  I have to say once you get past this stage of the game, it's amazing how good you will feel when you eliminate sugar and start to cleanse your GI tract of that nasty candida.  I had thrush that never went away and it finally did for good once I did this regimen.


There are a few things to know....the symptoms of candida and celiac overlap and can mimic each other so make sure the underlying cause is not celiac that is being ignored.

I knew I had candida also because of the thrush. It just never went away until I followed the candida regimen.  The Nystatin did not have any side effects for me....I tolerated it very well. Sometimes those old school meds work better with less side effects than the new wave of pharmaceuticals.  I did really well after that for awhile until celiac reared it's ugly head even worse and because I had gotten rid of the candida problem, I started noticing those symptoms even more.  Kind of like those who don't realize they have a problem with dairy until they go on the gluten-free diet and start to heal....symptoms return and it isn't gluten.


If you eradicate candida from your system, then over time, you can resume a more normal diet, including sugar, and it should not bother you. It is not a lifetime diet like going gluten-free is.  For health's sake, I would not eat a diet high in sugar but a little sugar everyday never hurt anyone...except maybe a diabetic but even they can have a little sugar in their life. Candida is usually the sign of an underlying problem. If your GI tract is not healthy, things that are normally present can get out of control and wreak havoc. Another good thing to take, and highly touted by Irishheart for good reasons, are probiotics. They help to counter candida's affects and re-populate your GI tract with good bacteria.

It's all about balance.


Make sure you see a real doctor for guidance with anything which needs a specialty diet and meds on a daily basis.  I know some docs are as stupid about candida as they are about celiac but there are those who recognize this as a real problem.  The trick, I know, is finding them.


The last thing....eradicating sugar from your diet is hard......much, much harder than avoiding gluten.  It tampers with your blood sugar levels at first and you feel like depression city. The first 2 weeks were horrible with severe mood swings.  I thought that part much harder than the die off stage. Make sure you have a problem with it before taking this on because it just isn't easy to do.  You can derive sugar from more natural sources like non-refined carbs.  They still break down but your body has to work to do so and you won't have peaks and valleys like you do with refined sugar. And then there is fruit.......full of fiber too and not the same as downing a glass of juice.

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#922374 Vitiligo

Posted by on 02 July 2014 - 01:45 PM

I was thinking something along these lines but didn't say anything. My husband has vitiligo, which he's only had a few years. He also has type 1 diabetes which has been for 20ish years now. I think (working on diagnosis) that he also either has celiac or crohn's. (God... let it be celiac, far less scary!) I've noticed when he gets bad "flares" with his intestinal problems he also develops more "spots." So while it isn't specifically linked to a lot of things, I have no doubt that when his AI system gets all wonky that it's what is making him splotchy too.


I have a fun set of diseases myself, AI and otherwise. And while one isn't linked to any specific AI disease, it is common acceptance that it is far more common among people with one or more AI diseases no matter what they are. I know that some links are specifically established, and that's great. But I don't think it is fair to discount that AI diseases in general tend to be linked and cluster, regardless of what they are.

Yup...I agree, Addy!  The key is to tame down the immune response and diet is always a good, first start. I think any one with any AI disease should be tested for Celiac.....simple little blood test!  If that comes back negative and the immune problems are ramping up, I would just do a dietary trial for awhile. Can't hurt to eat gluten free

for awhile.

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