Questore

Today is my 2 year anniversary from going gluten free, and I am better.

Of course, I am not as better as I would like to be...58 years of diminishing nutrition has taken it's toll.  I am now on Insulin for the Diabetes that hit two years before the discovery of those nasty alleles in the family genetics when my Niece was diagnosed.  It seems that not enough nutrients cause no end of ramifications to your overall health, but I can say with truth that I am making progress.

I am sleeping well, and actually feeling somewhat rested by the sleep, and evidently am taking up more nutrients for all purposes, since I have more energy, and do more to continue to alter my life to chase a full recovery. In the world's eyes it does not look like much, but when I consider how ill I have been in the past, and how much better I have come to feel, I can ignore other people's opinions.  I will never be the normal active person I failed to be the rest of my life while eaten gluten, but I will be a little less disabled, step by step, and consequently, happy that good things are happening to me, even if it seems like little progress to others who want an instant fix for a problem I have been suffering from since conception.

I wish, of course, to be fully healed from everything my body is reacting to due to lack of nutrients, and continue to take  mineral supplementation in an ionic base so that I can get some of the minerals to the right places.  And I am changing my diet for the fourth time, and cooking differently once again, and getting rid of low nutrient foods as my upper intestine seems to be acting as if the villi are back in place to a degree.  My stomach still protests anything with fiber being put in it.

I only know that going off gluten has made me better, and being properly diagnosed has changed my entire view of myself as being an unhealthy person.  I now only see myself as a starvation victim despite always having had a full belly, and have begun to look at who I have been, and the choices I made from the knowledge that I was a fine racing car operating on watered fuel, and suffering from bad mechanic's who had no idea they should check what was making my engine sputter!

I wanted also to report in, for those that think they will never get past the desire for a hot piece of garlic bread, and the lack of edible pasta...it can be done, and if you will but be patient with your self, and study all your reactions to food, you can design a life that will suit you well enough to enjoy being alive.

I have been wondering the same. 

For the first time in my life, I have 1) not been suffocating all the time, and 2) my body temperature went from 97.4 average lifelong, to NORMAL at 98.6!

I have found that it is very strange to be getting more healthy as I age.  I went off wheat, and starting taking a lot of missing minerals.  I got better.

On the other hand, my allergies are worse this fall...but that could be the weather...very strange here in California, actually having a little rain!

  On 6/4/2014 at 8:09 PM, beth01 said:

Celiac is a disease from hell that pretty much equates to people that don't have it eating rat poison.  That is what gluten does to a celiac. That's my story and I'm sticking to it!

 

 All joking aside, it really depends who you are talking to.  Are they going to understand the constant medical terminology associated with Celiac and all your other related health issues if you have them?

 

I worked in hospitals for 16 years so I have a lot of friends that understand all the medical related crap.  I get into details with them  All by other friends I try to explain the simplest way possible.  Use words like allergic, medically necessary, explain just where gluten is found and what it does to your system. You don't have to get graphic, they don't need to know that you can finger paint with your poo and hit all colors of the rainbow in one day, but just the basics. I don't have a specific speech all laid out, but I hope that helps a little. 

 

Pretty sure someone with a more vast experience with this will give the most perfect answer.  I will also be awaiting to see what they have to say.

 

Good Luck!

Oh, Bethie...you made my day!

I am still laughing!!!

All fun aside, I say "I have a disease that makes wheat, rye, barley and oats burn the lining of my somach like acid, and makes me sick for weaks over one crumb. Can you help me?"

I don't even need to name the disease.

  On 5/30/2014 at 10:33 AM, GFinDC said:

Hi Simon,

 

Welcome to the forum!

 

You'll probably see people refer to their spaceyiness type symptoms as brain fog here.  That's generally what people call it.  And look, now you have two repsonses!

And I'm #3...I have had severe Brain Fog for the last 19 years, Chronic Fatigue, Fibromayalgia, IBS, Anxiety, Depression, and a dozen other things going back 53 years to when I was 6 years old!

I have been Gluten Free 14 days, and have the best, most alert mind, and feeling of happiness since day 4.  Not having the Fog, the Tireds, make it worth living without gluten. 

I look forward to being really well...evidently, like others here on the forum, I have never known what 'well' feels like.

You are looking at your most likely answer already...get tested, and then get off the gluten!

  On 5/29/2014 at 5:39 PM, 1desperateladysaved said:

Did you begin taking any vitamins?  Vitamin B colors the urine more yellow.  I know this from personal experience and speaking with a doctor about it.  Have you been tested for celiac?  There are over 300 symptoms and some of yours may be a fit.

 

Welcome!

 

Dee

Dee,

I've been trying to find a list of the 300 symptoms, but can't get more than the obvious, standard ten or so list.

Can you tell me where to get the list?

Thanks,

Q

Having just turned 59, and being alone...no spouse, kids or family...I am looking at having to get healthy enough to live on my 5 acres in SoCal, and raise my own food indefinately, and hopefully falling over in my greenhouse, and not being found until it's far too late to do anything for me.

That means a living trust, orders to be taken of at home...which is cheaper than nursing homes, and a paid off home to use as a checking account for my last days.  That and a sincere belief that YHVH will prevent me from acquiring any more disabilities than I already have will keep me from a half-life in a nursing home, as SoCal is already letting people die at home now.  Another 20 years, and the state will be helping us exit this life quickly, I have no doubt.

A full Diagnosis is valuable if you need it to get appropriate treatment in the future, and most people do need it for that, not to mention for warning your family about their possible genetic link.

  On 6/5/2014 at 3:45 AM, Si & Ash said:

My 5 year old has a requisition in for the attg iga blood test (the only test available here in Alberta, Canada). He has been on nasonex (mometasone) steroid nasal spray daily for quite a while now. How long should it be off it before we take him in for blood work? Thanks so much

I take something similar, and really feel my allergies galloping back in just a week, yet it takes a good six weeks to really take hold...you will need to call your pediatrician to find out how long your son's medication takes to get out of the body...it may have a higher half life than mine does.

Just be ready for a heavy eyed snuffly and miserable boy in the interim. 

My heart goes out to him, and you.

Good luck on the testing.

I haven't been having as much trouble as I thought I would...then I remembered, I had had intensive training for this years ago...with just oatmeal and potatoes!

I did however need to go shopping this week at a normal market...you know, where they put all the pastries just inside the entrance door!  Talk about wanting to holler at someone for being so insensitive!!!  I put my nose in the air, and tried hard to feel as nauseated as if I had eaten them.

My real problem right now is finding a good bread recipe...I want to use all the grains and seeds I can, attempting to replace my beloved Orowheat Honey Wheat Berry that I could scarcely find in the stores when I was eaten food with gluten in it!  I tried both of the RedHill mixes...one is a bit corn flavored, but okay...the other a lot buckwheat flavored, and not so okay...I had to put butter and Maple Syrup on it to eat it at all.

Now begins the experimentation...and lab notes!

  On 5/27/2014 at 5:15 PM, kaayrah said:

Hey Everyone,

 

So I just recently (finally) got diagnosed as celiac, I finally got a doctor willing to listen to everything going on and send me for the right tests. Just looking to see if anyone would have suggestions for someone living in a smaller community that has limited options for grocery shopping and very limited gluten free selection. I have the option to drive an hour to the nearest big city center but that's going to be extremely costly to have to do every couple weeks for food when normally we go once a month if that. I do have access to local produce and meats (beef, chicken, and pork) that are butchered at a local butchers. (definite bonus to have farmers and Hutterites close by that rather sell local) But other than that just the basic things like snacks, I am constantly eating because of weird blood sugars (at least 6 small meals a day).

I am super happy to have found this site to have others to get insight on options and brands that are safe. I am certainly struggling right now getting out of the denial stage of this is for real and I cant eat a lot of my favourite foods or go out with friends for supper as often. Any suggestions or support would be greatly appreciated!

 

Thanks in advance 

Red Hill Products are available on line and in quantity, and there are many online stores that speciallize in all the grains, flours, nuts, and seeds that make no-gluten breads tasty.

I've ordered in several things to try in small amounts, and am relearning to bake my own breads...isn't that what bread machines are for?  After I get some bread made today, I plan to reporoduce my very favorite triple dark brownies...and hope that Red Hill's flour will give me a tasty result.

With the occasional sandwich and brownie, I will not be missing much except the convenience...and the occasional Twinkie!

As for eating out...talk to the manager before you go...some have special procedures in place for Celiac's...one merely has to let them know you are not just a 'gluten free' faddist, but the actual disease.

  On 5/26/2014 at 1:21 PM, kareng said:

I am not sure what post you are responding to. This poster isn't diagnosed. Having a Celiac gene does not mean you have celiac. About 30% of the population has a Celiac gene, yet only about 1% of the population has Celiac.

Celiac does not " degrade" the stomach. celiac is a disease of the small intestine.

My apologies, KarenG.

I responded to what I saw in the post...I must have been very tired.  I have corrected the word stomach to upper intestines as per your correction. 

Thank you for your corrections.

I heard that the pain was the last to go...but that's probably for those of us with Fibromyagia - muscles stiff and cramping everywhere!

Ha!  It's probably what ever you need fixed most that will go away last.

I take all liquid vitamins...ionic everything, plus ionic minerals of Postassium, Magnesium, Zinc, Calcium, and an Ionic Blood Sugar Support blend of Manganese, Vanadium, Chromium, Fulvic Acid, and all 72 trace minerals...four times a day in one cup of raw homemade veggie juice.  Can't taste them, and they absorb before they hit the Upper GI tract.

I have new probiotics and enzymes on order, so no idea how those help...I am sure they will add something to the mix.

I defininitely noticed the ionic minerals when I started them, as they are the electrolytes that help run your brain.  I know I have mal-absorption of zinc and protein (my fingernails show it), but this is only a week old with going off gluten, so I won't know for a while when I begin to absorb them again.  On the other hand, I feel awfully good for just 6 days on Gluten Free...have more energy and better sleep, with slightly less stomach cramps.

I don't worry about overdoing the vitamin and minerals...I watch my urine, and as soon as I notice it getting more than light yellow I cut back...and when it goes too pale, add them back in again.

I also take Primrose Oil and Remifemin for bad Hot Flashes...it cut the intensity by about 2/3.

Thank you all!  I love having a good laugh over anything.

It seems to burn pretty far up, rather than at an "exit" point...but before they told me I had IBS, they told me I had Colitus, so I am not really surprised...!

When I think back over the years and all the problems, and diagnoses I've gotten, I get so mad that someone didn't just think to check, but just as I have a low opinion of Lawyers, I have the same feeling towards the medical profession!  Not that they both cannot do good for people, but that they so often don't!

  On 5/26/2014 at 9:36 PM, cyclinglady said:

Nicole provided you with some pretty good answers.  Perhaps you should consider testing?  

 

There are over 300 symptoms for celiac disease, so you might have it.  Only testing can provide an answer.  I would definitely give up dairy completely for the next couple of months.  That may be affecting your eyes.  Not a milk/lactose intolerance (though possible) but a moderate milk allergy.  Do so research on that topic.  There may also be other foods that you may be intolerant to.  I would keep a food diary to see if you can find a pattern between food consumption and skin symptoms.

 

Good luck!  

CyclingLady...where can we find the list of the 300 symptoms of Celiac?

  On 5/24/2014 at 4:03 PM, Steph1 said:

I want to ask how people got used to advocating for themselves with friends, family, etc.  It sounds like a weird question, but I have had social anxiety and depression since I was young, which makes it hard for me.  I am afraid people will think I am lying or just being my normal crazy self.  The ironic thing is that being gluten-free makes my crazies go down to a normal level.  I have no dx, just stumbled upon realization that I am either celiac or intolerant through a diet.  So am I even welcome to post here?  This whole thing makes me feel like such an inconvenience.  Sorry for the rant.

I am glad to have you!  I am not diagnosed yet...I am older and alone, and it hurts no one if I do not get diagnosed...not even me.  But I am gluten-free for 6 days, and it's already worth it.  I can't wait till I get to 6 months to see how much difference it makes.

The difficulty for me with advocating for myself is that people do not want to pay attention to what I am actually saying.  They hear the anxiety in my voice, and they rush in to smooth things over, and make me feel better, but I end up not being heard,

The oddity of Celiac seems to be that one day, your body decides to recognize the protein in wheat/barley/rye that we call gluten as a poison, and not a nutrient.  The effect is to kill the upper gastrointestinal tract cells...leaving little bits of burned out cells behind.  After a while, the intestines get really spotty, and don't take up nutients well because so many cells have been burned off.

Then your brain begins to react, and everything gets out of balance.  No nutrients of one kind or another, and the brain doesn't produce the right hormone here, or make that enzyme there.  Your cortisol spurts, and suddenly, you feel like you should be running from a dragon, and it's just your next door neighbor saying hello.  Or a little boy at the bus stop that picks on you on the way to school.

Then other things in your hormones change their levels to react to the cortisol, and then your brain reacts to the hormones, and suddenly stops producing serotonin, and you get depressed.  The downward cycle continues.

Less and less nutrient uptake, and less and less for your brain to use to try and run your body, and the worse you feel, and the more anxiety and depression, and then you start to feel all the effects of everything going wrong...your personal version of course..everyone seems to have a slightly different chain of events.

But by the time you find all this out, you have been acting touchy and fearful, no matter how hard you try to control it, and the more you try to hide it, the more stress you cause yourself, and adds more cortisol to the cascade of hormones, messing things up even more.

People do not understand what is happening to you...they know it's something, but after a while, they just try to say soothing things, and do not take you seriously.  It's bad enough with your friends and family, but when the Doctors do it, they are preventing you from getting well, and they do not know they are doing it. They are busy, and they will write you a script, and smooth over the anxiety and depression with meds, but it all still keeps going.

Trying to get anyone to sit still for the entire story, when they have already heard parts of it is darn near impossible.  Until they see the research and the data, they will not hear you very well, and end up making you feel crazy fo being sick...or sick because you are crazy, and you cannot reverse the impression in their minds until you are well.

It takes a long time to show people that something changed.  And until they see that you are getting better, or you have a horrendous diagnosis from a Doctor that says CELIAC DISEASE, they will have trouble seeing what the big deal is.  It's only a little flour, after all...it's no big deal...right?  Just 1/24 of a teaspoon of flour will make you suffer...just  tiny pinch of bread...a crouton...a single lousy crushed crouton sprinkled over your salad, and you feel awful for days...and they don't seem to get it.

With a diagnosis you have a chance to communicate, but you have to get in people's faces, and get used to being stressed out by standing up to them, and be heard, or make the choice of going silent, and just making all the changes.

That's hard for our nerves too...humans need feedback or they feel like they are not seen, not heard, and not real somehow.  We need people...it's built in to the human condition.

The simpler the explanation, the better...like "No, thank you, "...or "I don't eat that anymore."  And when they ask why, just say it makes you feel sick. 

Don't describe it, don't explain...it does no good. Just stick to your guns, and when you have a diagnosis give them a copy of it, and a few choice printout's from this site...or the University of Chicago, or from your Doctor, if you have a good one...they do exist.  And keep not explaining.  Just say it, and do it.

They do not have to understand, although it is nice when they begin to.  They just have to hear you, and accept that gluten is a poison to you.  It's not to everyone...just about 1 in 150 people or so.  And it's genetic...you can't fix it...it won't go away.  Your condition will just keep quiet if you don't mess it up with their "Just one bite won't hurt you!"

Keep it simple, and repeat.  If it's your family, repeat it a lot.  Be stubborn.  No you can't just have one bite...one bite is enough to make you sick for a week, or weeks.  Get graphic with your family...it's a poison when it hit's your body...they are lucky, because it burns your intestines like acid....poison....burns.

It is, after all the truth.  We just have been too polite about our problems, and look what it gets us...ignored, and shoved to one side by too many people, particularly Doctors.

As for the stress in standing up for yourself...it is self defense...it's worth it in the long run...but it sure feels awful sometimes.

Don't give up.

XXXXX

Agreed.

You are a classic non-symptomatic Celiac.

Your stomach will degrade without you knowing it...you will get less and less nutrients from your food.  You are eating a poisonous protein called gluten...you cannot escape damage if you continue to consume it.  The protein acts like an acid, burning your villi off.  The food slides by, and you get next to nothing from it.

One bad thing happens...one bad day...overwhelming stress...an auto accident, and your body changes completely?  You become old overnight.  You lose your career, and then your spouse, and then nearly the house you worked so hard for?  Is that what you want?

And then you get to feel gradually worse until you wake up and say..."Why did I eat all that junk?  Why did I waste so many years?  Why did the doctors not find out sooner...

Oh, I forgot...this is you, not me.  I had symptoms and no diagnosis.  You have a diagnosis, and no symptoms.

You're fine.  Have some cake, and eat it too.

But remember that every microgram of gluten is burning your small intestines away, and eventually your currently un-symtomatic body will crash on you.  It is very unpleasant, and no, you cannot escape chemistry and biology.  You will not be lucky...you have already won the Celiac Gene lottery.

I am sorry that anyone has this genetic tendency, and I pity you sincerely...no symptoms, and the damage being done anyway.

1/24 of a teaspoon of wheat is enough each day to damage you...burn away your intestinal lining...one bite from a sandwich made with that wonderful wheat stuff that tastes really good, and is everywhere, and though you do not feel it yet is making little holes in your stomach. upper intestines.

It is very hard to be wise, and act in courage when nothing seems to be wrong.

Be courageous anyway.

Vaya con Dios

When my niece was first diagnosed after years of suffering...that was so similar to mine, that I wondered what she was complaining about...I only heard that she had to change her whole diet.

One of my friends has been going gluten free because her sister had issues...not celiac disease, but gluten sensitive...I have not wanted to listen.  I have not wanted to change my habits.  I have not wanted to give up what is easy and tasty.

Then I hear that my niece is doing great...no more pain...no more anxiety...depression...anger problems...sickness...she is better than she has been since a teenager (now 35ish).

I read.  I read a lot.  And then I look at the pattern of my diagnoses over my lifetime.  I have boxes of medical records...BORING!

I am sick of being sick, and so tired of being tired, and then I think, well, what if I did?  Change?  Me Changing?  You mean I could do more than juicing veggies a gallon a day, and get still better?  I already improved my absorption by juicing enough for me to feel like getting up long enough to buy the veggies, and do the juicing...to the point of putting in a greenhouse, and raising my own stuff...but stop eating my comfort foods???

When you have only discomfort you want some comfort somewhere.  I have a dog, and a cat.  I am 59, alone, and broken.  But I have another 30 years left of this life without trying that hard...my great grannies lived to over a hundred each without doctors.  That's a long time to lie around suffering if I don't have to suffer...especially since I already changed my diet in a major way 3 1/2 years ago.  I only have to drop grains, and I'm on paleo already...organic all I can afford. (Which is why I am raising my own...5 acres in SoCal!)
 

I prayed about it.  I heard direction.  I came here, read some more.  Then I looked my diagnoses, and said, that's it...I don't need to wait...I am alone...only me to get me better (and God). 

5 days...so far, so much better (4th day started feeling a difference...about as long as it takes to clear your digestive system of what is in it. 

The damage is there, but the stuff digesting is better, and some of the brain fog lifts a bit, and I actually feel like doing something for over an hour?  Wow.

If you want to be well, you will need to change.  Period.  If you do not, you are fulfilling the definition of insanity...doing the same thing, and expecting a different result.

Your life...your choice...but lots of hugs anyway!

XXXXX

P.S.  It actually is fun throwing all the junk out in your kitchen...expensive, but fun!  And cute little bags of grains and stuff I never heard of...and it's not that different. 

It's okay.  I will get used to it. 

I have gotten used to a lot worse, and so look forward to better.

What scares me to death is how much we have going wrong with us, and the Medical Community barely knows what is going on!

So much pain and suffering on this board...I keep praying for all of you!

Who will be hurt if you do not get tested?  Since auto immune is genetically linked, your family might need to know.  If my niece had not been formally diagnosed, I would not even be here, and already doing well...but there is no one I can hurt by not getting diagnosed, and no medical/insurance to be compromised by not having a diagnosis.  I value doctors, but they are not the God we should seek, regardless of how they might feel about themselves.  Doctors are not infalliable, and many here have suffered from their doctors not being willing to look at the whole picture.

You have to do the work anyways...it's all on you what you eat. It always has been.  The information wasn't public enough for many of us for too long. As a nurse, you know just how the system works.

If eating gluten makes you too ill to work, and you need to work to survive, you have already reached your decision, and do not need to blame yourself for not getting tested.  If you can get tested first, do!

I decided not to wait...your history is much like mine, although my early Immune Disorders are different.  My niece was diagnosed, and I finally checked it out after hearing how much better she was in only a bit over a year...Fibromyalgia gone, pain, anxiety and depression, intestines doing well after only a year or so gluten-free.  I'm already on Medicare from a disability, so getting tested is easy...it is getting free of the interference in your life that bothers me, and at 59 I am alone, and no one to hurt by not getting diagnosed formally. 

I am having private testing done for my own information...$1,047 for all sentivities and half the gene panel at EnteroLabs...not looking for a diagnosis, but for what I am already putting out antibodies for so that I have the best knowledge of what foods to avoid.  I've been gluten free for 5 days, and started feeling better yesterday...brain fog cleared, and am in persistantly good spirits with more energy!

BUT - I do not recommend this for anyone who has not already been told by their Doctors there is nothing else that they can do.  Sure, I can get tested, but what is the point?  I still have to do the work. 

Not getting tested can mess you up for your future medical treatments and insurance, so be tested if at all possible before you go off gluten, because it's like taking poison again to re-glute and get tested later.

I've been noticing this for a while...a long while, but finally nerved myself up to ask...is any one having or had burning lower bowel/diarrhea unconnected with hot foods or additives?  Think Chile Peppers, not that I indulge, but I've heard!!!!

Has anyone heard of having type II Diabetes, and becoming normal after cutting out the gluten?  I've dropped about 15 mg/dl's on average in 5 days....after being stable for ages on my previous glutenous diet!

My, you are stubborn!

I am glad you are feeling so much better...have you found a pasta brand that works for you?

The blessing for the very young is that they heal VERY fast once you know what is wrong...I know it's hard, but keep the gluten in until all the tests are done!

  On 5/24/2014 at 11:33 AM, mommida said:

I am truly left handed, I'm just doing stuff with my right.  I write right handed with a left handed back slant.  I can switch to left handed writing if you hand me any writing utensil, and any "new" activity is always approached as a lefty.  (switch hitting for batting, puck handling for hockey is left, but most available sticks are right.)

I guess that makes me a lefty forced to be a righty...my right handed writing leans over soooo bad to the left!  Otherwise, I seem ambidextrous...I use everything on the body to avoid straining the opposite side!  I have 2 AI's...waiting to see on Celiac, but niece got diagnosed as celiac disease.  Day 5 of non-gluten, and actually feel more awake and less foggy!  Is that possible?