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Member Since 25 Aug 2006
Offline Last Active Yesterday, 07:58 AM

#934964 Celiac Testing And Insurance

Posted by on 15 November 2014 - 12:14 PM

SMRI......I made the point of saying I was not trying to start an argument but I knew someone would. My information is 100% true. You haven't read the law because it's in there. It is illegal to refuse insurance to anyone but like it or not, those with pre-existing conditions WILL BE charged more than healthy, younger people. I am sorry that you have a problem with the truth but the truth it is. That is part of the reason so many people are unhappy with the law, as it stands. It is not going to work like insurance in other countries with a single payer system. You have to buy a policy and how much you are charged depends on many factors, one of them being age and pre-existing conditions. The only people who will not pay more are those with very limited income, which is as it should be. I have no problem subsidizing Americans with limited income.
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#930400 Eye Problems?

Posted by on 11 September 2014 - 11:34 AM

Hi Strawberry!  It's been awhile since we have heard from you.  I hope things are going well but for this eye problem.......


Do your eyes feel overly dry?  Do you have mouth dryness?  I ask because Sjogren's Syndrome is common with Celiac and it can cause vision problems and eye pain.  I have Sjogren's myself so thought I would start there.  I don't mean a little dryness......Sjogren's will give you extreme dryness.  Do you have more dental problems than usual?  That's another symptom of Sjogren's, as it applies to your mouth.

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#930119 New Here And Need Help With School Policy

Posted by on 09 September 2014 - 12:13 PM

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

OMG...this one nearly had me choking on some fruit I was eating!!!! 


As there is no legitimate source on the subject of super sensitivity, and we now have a whole section devoted to a subject that is not recognized by any legitimate Celiac organization or doctor, do you want to explain to me why you answered StephanieL in the manner you did, when she actually had some really good suggestions, based on expert experience on the subject, to offer?  This coming from someone who thinks you can be glutened from melons or that there is gluten in soil which can uptake into food that is being grown?  :blink:  Oh, my....that is priceless...... :lol: ...and just my opinion, of course!  ;)

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#929992 How Did You Heal Your Gut? Besides Giving Up Gluten...

Posted by on 08 September 2014 - 11:51 AM

There is no proof that cutting out all grains will help a person heal faster.  I did not and continued to heal on a slow, even keel.  Healing takes what it takes in each person and, unless you figure out that you have an additional food allergy or intolerance to a certain food/grain, there is no reason to.  Especially if you were like me, a classic Celiac who desperately needed to gain weight after diagnosis.  You will not stabilize your weight if you cut out grains.  You also need variety in your diet and grains will give you that, along with nutrients and fiber...if you eat the right grains.


I think the hardest part for people to accept is that coming back from a celiac diagnosis will take a lot more time than expected and you just have to be patient.  Getting a thyroid problem under control is important also and balancing all this can take time.  Although my gut felt better almost immediately after going strictly gluten free, all of the neuro and other issues took 3 years to completely disappear.  I have 4 AI diseases in total and have to admit that almost 10 years out from diagnosis, I feel great and lead a completely normal life that is jam packed with work, exercise and everything else life throws at ya.  I actually do more than people without all my health issues but I think its because I eat better than anyone I know and take very little in the way of meds.  If I can achieve this, anyone can, although I am sure it doesn't feel that way sometimes. I would just be wary of cutting out too much food variety when trying to recover.

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#928697 Half A**ed Diagnosis.. Not Sure If I Am Actually Celiac

Posted by on 28 August 2014 - 12:16 PM

With a DQ2 gene, you have the predisposition for developing full blown Celiac.  With what you have described, it sounds like that has already happened.  One thing I always say to people who don't have a definitive diagnosis is.....if you are that sick when you eat gluten and have the genetics for it......high risk genetics to boot......why would you do a challenge?  Could you request a biopsy?  Although the biopsy has a somewhat high rate of false negatives, you could use that as a tool to see what is going on in your gut right now.  It may not give you a diagnosis but if you are having problems, it could rule out other problems for you. 


If you do not or can not do a challenge (and I don't blame you one bit), just stay gluten free and be very strict about it.  I would also recommend taking digestive enzymes because it sounds like you are having problems with fats right now.  I did too....for a long time.  They will help you digest the food that you are having trouble with now because your gut is most likely not healed.  Also, dairy could be causing issues for you, as it does for so many of us.  Are you eating dairy?


There are many reasons why people with full blown Celiac test negative on the blood work and it doesn't mean you don't have Celiac.  But if you are doing a dietary trial, you have to be strict, even with cross contamination, or you will get sick.  You may want to read the Newbie 101 thread, which has great information on how to do the diet right.

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#928694 Abnormal Screening Mammogram...worried

Posted by on 28 August 2014 - 12:02 PM

Do you think celiac causes or contributes to abnormal growths?  Whether it's canker sores or like what I've had this year uterine polyps, gallbladder polyps, etc.  Just wondering.


I will celebrate for sure!  

I think it could and the reason could just be out of control inflammation.  Canker sores would be more obvious because your mouth is the start of the digestive tract.  But most illnesses start with inflammation so there could be a possiblity of it causing many other things.  I doubt there would be any studies done on it, though.  There is no money in Celiac Disease for doctors so we don't get much attention as far as research goes......only to come up with a stupid pill so people won't have to follow the diet.  I'd rather them study the link between associated conditions and a cure for those!  Sjogren's Syndrome can be a bitch......I would love it if I had normal moisture in my eyes and mouth.  :(

You don't appreciate these things until you lose them.......

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#928286 Abnormal Screening Mammogram...worried

Posted by on 23 August 2014 - 05:27 PM

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.
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#928090 Alcohol

Posted by on 21 August 2014 - 09:45 AM

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!   :)

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#928004 Abnormal Screening Mammogram...worried

Posted by on 20 August 2014 - 10:44 AM

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!

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#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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