Gemini

Don't listen to Hasselbeck when it comes to Celiac....she's an empty headed celebrity who has been WRONG on many occasions with her supposed knowledge of this disease.  Get a book by a real doctor or one recommended by a reputable celiac organization or a veteran celiac who has done their homework.  Unless you have habits that will make it easy to ingest your products, or you have a topical wheat allergy, gluten cannot be absorbed through the skin. With time, you will learn all the in's and out's and be comfortable with this!

I'm glad to hear someone else has issues with red eyes when wearing mascara or eye shadow with gluten.  I was told this couldn't happen, but I knew something was going on.  Yes, I agree, it probably won't cause celiac problems, but it definitely causes a reaction in me.  I didn't know that about hair products, but I do have frizzy hair, so I will be trying a new shampoo and conditioner.  Something else that happened with me, that I've been told isn't possible since it isn't ingested, is, before being diagnosed with a bad gluten sensitivity, I worked in a pizza parlor that the dough was made with High Gluten flour.  I'd come to work and within 30 minutes, I'd be tired, stuffy and just not feeling well, even though I felt fine coming in.  I told everyone I was allergic to the place.  Sadly, I really was.  Has anyone else experienced anything similar.  I do know that when I eat gluten by mistake, within 2 days I am miserable with cramping, sharp pains (internal porcupines), bloating and heart burn (this usually shows up first-within minutes to an hour).  This will go on for several days.

Working in a pizza parlor or a bakery or anywhere else where there is a lot of airborn flour will cause a Celiac reaction.  Celiac's cannot have these kinds of jobs unless they want to remain sick.  You are essentially breathing it in and anything that goes down your nose and throat, or even just sits in your mouth and throat for that matter, is already in your GI tract.
There's no mystery to that.

You can certainly have a reaction with your eyes if you use eye shadow or mascara with a wheat component but it is most likely an topical allergic reaction, not a celiac one.  I have Sjogren's Syndrome and I have problems with my eyes from time to time because they are dry and I have allergies which directly affect my eyes but it isn't because I wear eye shadow.
I can wake up with reddened eyes after having NOT worn eye make-up so it's the allergies that are troublesome.  Most concerns about gluten in make-up can come from the use of tocopherols, which is Vitamin E, and it can be derived from wheat germ oil. Most reputable celiac organizations reagrd it a non-issue because they are so highly refined and the amounts used are miniscule.

Your family sounds exactly like mine.  My father will turn 80 in April and he is also a lifetime drinker.  Not so much now as he is on a boatload of meds but he drank heavily his entire adult life.  I am the diagnosed celiac in our family and my father is presenting just like I did...classic celiac.  I have a double DQ-2 gene, which means celiac is on BOTH sides of my family.  I have tried in vain to get his wife to have him tested but my pleas fall on deaf ears.  To make matters worse,
my father has "dementia", which is getting pretty bad.  I think it is celiac dementia but try telling all the unenlightened ones that.

I have learned that you cannot save everyone. You may have to back off because, sadly, everyone has the right to do as they choose with their health. I have resigned myself to the fact that he will most likely die of untreated celiac. He is so skinny, it's scary.  People stare. He has ataxia, lives in the bathroom after eating, dementia, skin rashes and sleeps a lot of the time, especially after eating.  Sounds all so familiar.  It kills me to see him like this but I am just the daughter and have no control over him at all.

BTW, he is also in Florida.  The similarities are kind of funny. There are a lot of people like this out there. Can you imagine the number of elderly people who have celiac and everything is blamed on aging?     Actually...this is sick......his doctors tell him he is fine too.  He is on meds for BP and many other things but he is "fine".  Okey, dokey........

I'm not 'normal' if I can't eat anything but food I prepare. I don't know what plane of existence all you other people are on. It is becoming my normal, but that's not exactly the same thing.

WOW! You sound so angry.  Why is it not normal to just eat what you prepare?  You think the pioneers crossing the US in covered wagons ponied on up to the Taco Bell drive thru?  Not only did they prepare ALL of their own food, they had to kill it or grow it first.

I am in a very normal plane of existence.  I nearly died from this disease 8 years ago but once I found out why that nearly happened, it was all "up" for me.  I was elated to have a diagnosis and I guess I am the only Celiac on this planet to really not mind this one bit.  I am healthier now than most people in my age group and I don't go around complaining all the time about joint pain and thinking it's all because of age.  I have no joint pain, no muscle pain or any other pain.  I have been amazed at learning how much food influences this and feel very sorry for those who believe what the AMA tells them......"You have arthritis and it's because you are 55 and getting old.  Accept it and take these pills."

It wasn't easy for me either and took 3 years to heal but I am so good now, it's scary.  I run rings around people half my age.  If I can do this, anyone can.  I have a hard time believing anyone would miss the crap that everyone else eats!  This is why so many are sick today.....why would anyone want to go back to that?  I also have 3 other serious AI issues but do not give them much thought. They have improved by huge leaps and bounds after being gluten-free for awhile so I am eternally grateful that I have been given a second chance.

My co-worker has ITP and has to do infusions every once in a while when his platelets get too low and he has my same attitude. The infusions are done at the cancer center and he sits right next to people getting chemo.  Spend 1 hour there, says he, and you will be grateful all you have is an AI disease.  It's all about perspective.

To the newbies......it may be hard for awhile but recovering from an illness is hard.  It's temporary for the vast majority of Celiacs out there.  Do not give in or up!   It also helps to be focused on work or a hobby or something else so you don't become overly focused on what you can't eat or the changes that are taking place that will become normal after some time.  You won't always have a positive day but neither does anyone else in life.

Thanx for the encouragement. My problem is that all I crave now is carbs and sugar and im still losing weight. I went low carb for a while and felt immensely better until I started a more physically demanding job. Since I started it I cannot stay away from carbs and sugar. I still think I have candida and I dont have hope it is conquerable. It seems it is a lifelong thing and I know that is not something I cant do for a year let alone a lifetime. I have alot of money on a credit card that I am trying to pay off from purchasing my own kitchen equipment to try and expand my diet without making myself sick. After that I guess I may try at getting more tests done. Then thanks to Obama I have a delimma of having to pay for health insurance premium and deductible I cannot afford by the beginning of next year. I have had every food allergy test done you can imagine. I feel like I am playing slots with my life and I am running low on tokens

Razzle.....have you been tested for diabetes?  You say that you are eating carbs and sugar yet still losing weight.  That can be a symptom of diabetes. I am sorry to have to bring that up but you sound so miserable....I feel bad about that. We have all been there and it is really hard to remain positive.  It doesn't help to have to be forced to pay for health care by the government......I totally get that.  I do have insurance  through my job but it isn't that cheap for group policies either. This whole health care thing is gonna blow up and it's crazy to force people to buy into it or be punished. Like that doesn't add a lot of stress......

Hang in there because if you are feeling bad because of a gluten challenge, it may take a while for everything to calm down.  But you already know that.  Take care of yourself and I hope you feel better really soon.

I called the gastro to let her know and she told me I need to eat gluten again to do the bloodwork and have an endoscopy.  Problem is - I really don't want to get sick.  It's horrible!  Like all of you - the stomach pains, pressure, brain fog, constipation/diareah, bloating, rashes, headaches - is it worth it?  If I know I feel better then why torture myself?

You do not have to do anything with regards to a formal diagnosis if you feel better and can stick to the diet based on what you have done already. If you do not wish to eat gluten again, tell your doc you have nixed that idea.  I wouldn't eat gluten again either...not for anything!

You should be able to get your pediatrician to diagnose your son, without the endo, if he has said your son HAS Celiac Disease.  I personally would not do an endo on a 2 year old but that's just me.

Things are changing rapidly on having to "prove" to anyone that your son has Celiac and must follow a gluten-free diet.  My niece is a freshman at Ithaca College in NY and she is a self diagnosed Celiac.  I am the  only one so far in my family who has an official diagnosis and I did not have an endo.  Positive blood work, positive genetic testing and improvement on a gluten-free diet are other tools for diagnosis.  About the school........they did not require a doctors note saying she has Celiac. They are extremely accommodating and have seperate storage and prep area's for the gluten free students.  She can order gluten-free meals on-line.  Only certain people are allowed into the gluten-free food storage and prep area and you have to be wearing clean gloves before entering.  My niece is through the moon and very happy there and NOT getting sick.  She is definitely a Celiac because she had many neuro and gastric issues that mimicked mine and they all went away on the gluten-free diet....she is a different person.

I think as your son is only 2, by the time he gets older, many schools and camps will not be asking for a doctors note from a GI doc and have to "prove" the stupid gold standard to receive gluten-free food away from home.  I live in Massachusetts (but please do not hold that against me!)     and a college here was sued recently by a group of students demanding gluten-free food and proper care with prep because they were being told they had to buy into the food plan and the school would not offer to accommodate the diet.  You can't get away with that crap today and rightfully so...this is life or death for many.  Unfortunately for the college, and this is really ironic and funny, one of the kids father's is a civil rights attorney.  The school never stood a chance.  So.....don't let any doctor hold you hostage over a medical test.  You do not want to put your son through a gluten challenge just to to please a GI doctor.  I would talk to your pediatrician and explain what you have beautifully stated here.  I am sure they will help you out and diagnose him based on what you have told us.

Good luck and good work figuring this out!  You deserve a pat on the back for being so proactive on your child's behalf.

I have been gluten-free almost 8 years and the only other intolerance I have is to dairy.  I haven't gotten that back so it's doubtful I will at this point.
I can eat small amounts like milk in my tea but can't eat ice cream, drink a glass of milk or eat anything with a big dairy hit.  However, I am not too bothered by this because dairy isn't always the best thing to go heavy on.  If you have asthma, which I don't, or have allergies where you can develop congestion from time to time, dairy is something to be avoided as it's very mucous producing.  I feel clearer in my lungs and head when I don't eat dairy.  Besides, there are alternatives like soy milk and almond milk, which I like so it's not a problem for me.

Other than that, I have healed to the point where I am doing well and rarely get sick from GI issues anymore.

A doctor should never use tTg on re-test for dietary compliance as other autoimmune diseases can elevate tTg levels.  These can include liver disease, Hashimoto's thyroid disease, and a number of others.  The correct test to use for dietary compliance is the AGA IgA/AGA IgG or the newer, more sensitive one, the DGP.  Of course, you are not in the US so I am not sure what tests are used in other countries but it would be the ones testing for gliadin antibodies in the blood.

I am like your son....I had classic Celiac and weighed around 95 pounds at time of diagnosis and was extremely anemic.  You say he has grown in height and gained weight....is he still suffering symptoms?  If his symptoms have abated and his height and weight are improving, then I doubt his tTg is still that high from gluten ingestion alone becasue he wouldn't be gaining weight or growing. Don't panic about the anemia because that can take a while to resolve, even in children.  Everyone makes mistakes in the beginning and you really need to tighten up his diet and make sure he is not being cc'd BUT I suspect he may have another autoimmune problems, with a tTg that high.  I have 4 autoimmune diseases so I know the drill.  

I would highly suggest he have a full Celiac panel done and that he be screened for other AI diseases.  Most of the testing, if not all, would be blood work.  It took me a while to bring my tTg down into the low normal range after diagnosis because of all the other problems I had.  Doctors annoy the hell out of me...they make this mistake all the time and then blame the patient by making them feel they are not compliant.

Take a deep breath and then ask for more complete testing!  

Sounds like a whole lot of people comparing their insides to other people's outsides. It is impossible to
Truly know what another person has going on inside. I choose to use that time and energy on other things. I
also try not to judge others and I can count that towards my 26 Acts of Kindness!

Sounds like someone can't tell the difference between judging others and giving advice.  We choose to spend time and energy helping people on this forum...not judging them. The OP knows that cheating is bad but comes here to gather strength and uinderstanding.  That's what we are here for. That's part of my Acts of Kindness only I don't stop at just 26.  

I think a lot of people cheat and it seems to be largely younger people.  I also think that it's the same mindset as the diabetic who cheats and they cheat a lot!
For the older people like myself, you can't do that so much when you get past 50 as the bite in the arse is really bad.  If you get deathly ill from eating gluten, and I am one of them, you don't cheat.  I could see how you might think that cheating is OK but if you persist in this behavior, you may pay a big price down the road. It's the one thing you have to focus on when tempted to cheat.  What I don't understand is how you could see a resolution in symptoms and go back to feeling awesome and yet still question the diagnosis? Maybe a form of denial?

I hope you will work on this and strive to eat well and ditch the gluten for good. Get creative in the kitchen and then you will not feel deprived.  It really does work.  And stop relying so much on what a doctor thinks and says and listen to your body.  Doctors are human and make many mistakes with this disease because the testing is not concrete like an x-ray.  They see black and white....not grey.

After spending the last couple of weeks trying to help 3 (yes, 3!) of my friends who think they may have a gluten problem and get them started on a trial diet, and then listening to them complain, bitch, and become short tempered with me over what they percieve to be the diet from hell, I have thoroughly enjoyed this thread and think we have some brilliant people on here to have worded so well what I feel also.  Like Irish pointed out......I already almost died once and am not in a hurry to do it again.

I am really trying to figure out why so many people think eating whole foods and a little gluten free goodies thrown in is so horrific that they would cheat or even consider taking a pill so they could eat a bagel again?  I think the pill idea is wonderful IF it is designed as an aid to guard against CC while traveling BUT not to resume a full gluten diet again. Or a vaccine......nope.  Doctors are just not that smart...the immune system is smart and has been out-thinking them all along.
Look at AIDS....it keeps morphing so there never is going to be a cure.  They just manage it better and buy people time but there is no cure.  We are the lucky ones with Celiac.  We can manage it by diet alone and that diet is how people should be eating.  I am beginning to really believe that gluten is like heroin and that is why so many people cannot get off of it successfully. Young people need to learn how to eat right and not rely on the AMA to pull their butts out of the sling every time they get sick. That is not normal behavior.

Anyway......you guys made me laugh with some of your remarks!  It's nice to hang with people who get it because not many on the outside world do!

I have great respect for Dr. Green.

However, there are dozens  of Pub Med articles that conclude that they are beneficial in treating any number of gastrointestinal diseases, including celiac disease.

My GI doc specifically suggested Culturelle for the treatment of D (when I was diagnosed) and he suggests them to his celiac disease patients with concurrent C. Diff. (again, there are Pub Med articles that support this treatment.) Culturelle was studied extensively at Tufts University.

I agree that no one should take them if they do not agree with your system or if you do not feel the need for them.

I no longer take them regularly since I have begun to absorb again and no longer suffer D or C, but they were very helpful to me in the beginning when my GI tract was very damaged.

Obviously, people  should take great care in selecting any product before using it. Buy them from reputable companies.

Harvard Health reports: "Probiotics are generally considered safe — they’re already present in a normal digestive system . Be sure the ingredients are clearly marked on the label .. There’s no way to judge the safety of unidentified mixtures."

I agree with you Irish!  However, I would add that as much as I respect Dr. Green for his medical knowledge of Celiac, he is an AMA doctor and I don't always agree with him 100% with regards to things like this.  I also do not agree with his stance on endoscopies.  He is adamant about having one for diagnositic and follow up reasons but I don't agree.  Not everyone on the planet needs to be scoped. Doctors have become too reliant on them and now they won't even render a diagnosis and use their little brains to figure things out using the many other avenues available because they want to "see" damage to believe it. This is the mentality that keeps millions from obtaining a diagnosis and their suffering goes on.

I have been using a very high quality, expensive probiotic for 25 years now because a long time ago, when I was having horrific stomach problems, my doctor decided to do stool testing and discovered I had virtually no good bacteria in my gut, due to the then undiagnosed Celiac and other problems I had.  I started using them and never stopped because I find that my plumbing works better with them included in my diet.  As far as I am concerned, you can never have too much good bacteria in your gut!  There is so much crap in our food, antibiotics are taken too frequently (for some) that I think it a good idea for those with stomach problems.  If you are having trouble with them, then by all means stop but that should be investigated because good bacteria should not cause problems in your system.

As far as the age old stance of the AMA in that anything not blessed by the FDA and the AMA is dangerous and the ingredients cause for worry....bunch of horse pucky.  If you use a good probiotic from a reputable company, that should be sufficient to not cause worry.  The FDA constantly approves drugs that go on to kill some people or cause serious harm so the FDA needs a dopeslap...it's all about control for them and a piece of the money pie.

I would be surprised, albeit pleasantly, if there was a completely gluten-free resort.  With celiacs making up less than 1% of the population, a completely gluten-free resort would not seem like a viable business model.  It would most likely suffer the fate of all the celiac singles sites.  It would never attract the critical mass of users to be effective / cost-effective.  There just aren't enough of us.

There could also be an issue when a couple or family were traveling together and not all were celiacs.  If the resort accomodated gluten-eaters, then by definition they would not be completely gluten-free.  There would then be a possible problem with cross-contamination.

Nice thought though.

If a resort where totally gluten free, they could still accommodate the gluten eaters without any problems with cc....the gluten eaters can eat gluten-free for the vacation. What is the big deal with that?  We eat NO differently than anyone else...we just don't eat gluten but many, many foods, including pastries and desserts can easily be made gluten free.  If people aren't willing to do that for their loved ones, then clearly someone is in the wrong relationship.

Oh and did you know you can deduct your gluten free food ( and travel to get it) on your income taxes?   You have to keep receipts, but basically if you buy hotdog buns for 5.00 and regular ones cost 2.00 you can count 3.00 on your taxes. And if you have to travel 30 miles to get it you can also count that milage as well.  All the receipts are a pain but may be worth it.  Google it.  I am going to do this as well this year. I am just going to keep a huge list and every receipt.  
Good luck- it will all work out. Don't get tok frustrated.

If you are in the US, deductions have to tally up to 7 1/2% of your adjusted income to qualify for a deduction and it's going up to 10% this coming year, as part of the tax increases we are going to be paying. Unless you have surgery and pay for it out of pocket, the vast majority of people will not be able to deduct gluten-free food or mileage. You may be able to deduct trips to doctors offices but not travel to buy food.

Also, some people have been audited by the IRS after trying to deduct food......even for medical reasons.  Celiac's get no breaks on anything, it seems!