Have Celiac...DON'T CARE!!

[knitty kitty]

Another PO'ed Celiac, 

What nutritional deficiencies have you been tested for and when???  What were your levels?  Were you taking vitamin supplements when you were tested?

Celiac Disease causes malabsorption which results in malnutrition.  

You may not have gastrointestinal problems, but if your body is not absorbing the proper nutrients, your body can't function properly.  

Ehlers-Danlos syndrome, POTS, Sjogren's syndrome, hypersomnia, eye problems, post-bariatric surgery problems, and anxiety and depression all have ties to various vitamin deficiencies.  The one vitamin deficiency all these diseases have in common is  vitamin D deficiency.  Vitamin D deficiency is also linked to "female" problems and arthritis.

There is no vitamin D listed as an ingredient in your Zip Fizz energy drink mix.  It does contain a high level of B12.  High levels of one vitamin can unbalance the other vitamins and minerals your body needs.  For example, high B12 intake can mask a Folate deficiency.  

Zip Fizz seems to be lacking sufficient vitamin A.  Vitamins A and D are important for eye health.  

Vitamins A, D, E, and K are fat soluble vitamins.  If you are having problems absorbing fats, you may be deficient in these fat soluble vitamins.  

The B vitamins are water soluble.  They can't be stored in the body very long (less than three weeks).  The  B vitamins are used and stored in the tissues of the body.  Some circulate in the bloodstream, like B12.  You can have enough circulating, but still be deficient because there is not enough in the tissues.  

The eight B vitamins all work together.  When there's plenty of one, like that B12, there may not be enough of the other B vitamins for them to properly function inside the cells of the body. B12 needs Folate (B9) to function properly.  Without folate, B12 can't get into the cells and work properly.

Some forms of vitamins work better than others.  Some Celiacs may have a gene, Mthfr, that requires methyl forms of some vitamins, like Methylfolate and Methylcobalamine (B12).

Minerals are important, too.  Zip Fizz has very little calcium.  Calcium is vital to your bones and to cellular function.  You need calcium for muscle contraction, blood pressure regulation, and thinking.  You are supplementing magnesium, but magnesium needs calcium so they can work together properly.  

The bacteria that normally live in your gut and help with absorption and production of some vitamins have been disrupted by the Candidiasis.  Probotics containing Lactobacillus and Bifidobacteria are the most helpful to restoring balance. 

You might feel better after eating gluten because you are getting those B vitamins that gluten foods are enriched with.  You might feel worse when gluten free a few weeks because your body is not absorbing enough B vitamins and you become deficient and then have gastrointestinal symptoms.  A deficiency of Niacin, B3, causes gastrointestinal symptoms.  If you remove the enriched sources of B vitamins and don't eat enough of other sources of B vitamins like meat, you could become deficient.

Problems taking steroids can be because of vitamin D deficiency.  

I'm not a doctor.  I had stupid doctors who did not recognize malnutrition and vitamin deficiencies and their consequences when I walked into their offices.  I suffered through a long horrible experience that could have been avoided IF my nutritional status had been checked and addressed.  I had many of the problems you mention.  Bone fractures, unnecessary hysterectomy, obesity, POTS, hypersomnia, sleep apnea, type two diabetes, and EYE problems that has left me legally Blind.

I urge you to rethink your ZipFizz supplements and get on a vitamin and mineral supplements that are more balanced and beneficial. Ennis has wonderful suggestions for them.  

I found the low histamine diet to be helpful.  No grains, no dairy, no processed foods, no nightshades, nothing fermented.  

Vitamin D levels should be above 80, especially during illness.  Vitamin D 3 is better absorbed than synthetic D2. 

 Once my vitamin D level started rising,and my B vitamin deficiencies resolved, my health improved drastically for the better.  But don't neglect the other vitamins and minerals that your body needs.  They all work together. They all should be supplemented at least until you get past this crisis and your health improves.  

Hope this helps.

 

 

 

 

 

 

[Another PO'ed Celiac]

Like I said, one by one everything in my life is being taken away from me while all I do is continue to get worse.  The only vitamin level I've been low in is Vit D...but Vit D supplements cause kidney stones.  My B12 is through the roof and yeah I have suspected MTHFR mutation so I'm on hydroxo and adeno forms of B12.  I did magnesium Calm which caused intolerable cramping so I'm trying other forms.  I'm on top of all of that but the more I learn the more I realize that it's a hell of a lot more complicated that any doctor has the patience to figure out which leads to overwhelming frustration.  I've stumped and been referred on from 2 nutritionists and naturopaths!

I obviously don't eat the graham cracker Sargento's but somehow I must have missed that gluten statement.  There is a website I check for reference and they were listed as safe so I'm going to have to recheck my sources I guess...in the future, when I actually care again.

I know everyone loves to offer me all kinds of recipes and advice and food suggestions but please listen when I say I DON'T COOK!  It's completely pointless for me to cook when 2 bites has me full.  In fact, most of the time when I do try to cook, I'm full before the meal is even ready because of tasting and adjusting it along the way!  Cooking ahead to reheat later...NO!  It tastes nasty to me and I won't ever eat it and it will go bad and end up in the trash.  It's not something that will EVER be part of my life.  Seriously...the definition of insanity is doing the same thing over and over again and expecting different results. 

You guys keep repeating to me to eat or not eat the same things over and over.  I can't tolerate most whole foods...that includes fruits, vegetables, meats and grains!  Thank my sleeved stomach for that.  Yeah I fully realize that is what I'm supposed to be eating but I CAN'T AND IT'S NOT MY FAULT!

When you make a list of food that I'm allowed to eat, cross off everything that my sleeved stomach can't handle, cross off everything that I wouldn't touch with a 10 foot pole, and then start crossing off other things that are suspected to be causing me this problem or that....THERE IS LITERALLY NOTHING LEFT!  This is what none of you seem to be grasping and I know you are trying to help and believe me I appreciate it but everything you bring up is already stuff I have tried, researched and learned about, or had problems with.  Basically what it would come down to is that I don't eat and am fed with an IV for the rest of my life...only wait...that I can't even tolerate due to allergies with adhesives and even rubber and plastics.  I even have a reaction to things made with polyethylene (you should have seen my arm after a disposable blood pressure cuff was left on it for more than 24 hours).  

All of these new problems have happened only since I cut out gluten so whether my body is reacting to not having it and flipping out and attacking everything else or it's coincidence or random.  Who knows but it's not BECAUSE of gluten causing the problem when it happens after I stopped eating it!  

I am probably the most sensitive person you will ever come across but not because of being allergic to the world like I have seen so many people that struggle with allergies are.  I am a highly sensitive person... times 100.  I feel and sense things most people don't.  I see, hear and taste things most people don't.  I'm not crazy, depressed or delusional, even though I do see a therapist regularly.  She actually thinks I'm one of the sanest people in the world even though I've convinced myself that I have to be completely off my rocker crazy because of the intensity of everything I experience.  A beautiful sound or color or even witnessing an act of kindness can move me to tears of joy that I can feel as some kind of ecstasy.  A harsh word can be physically painful and make me not ever want to go out into this insane cruel ridiculous world ever again.  I don't watch TV because the absurdity of it makes me sad for the human race.  The cruelty reported in the news is something I can physically feel and I have more empathy in my little finger than the combination of everyone else in an entire city.  

So you tell me how anyone can expect someone to live like this without being selfish, cruel, or having completely no clue what I actually go through?  I don't want to die because I can actually feel the sorrow coming from my loved ones.  My brother committed suicide a couple years ago as well as a good friend's son (whom I took care of as a baby and is how she and I met and became friends) so I have first hand experience about how it affects lives.  One of my friends actually runs my state's chapter of the American Foundation for Suicide Prevention.   

I honestly don't know why I came back and started this thread because none of you can really understand.  Yeah, there are a lot more people that have a lot more problems than me, but they are managed by avoiding things and they feel better.  I NEVER FEEL BETTER NO MATTER WHAT!  And the people that have worse conditions than me are taken seriously by their doctors and the people around them whereas no one can see or understand my conditions so no one REALLY cares, other than my husband who is my best friend in the world and is the only reason I'm even still here.

What would you think of a person who has a sick pet that hurts and cries out all the time that has a disease with no cure, and this animal isn't allowed to have treats or maybe even has to be fed with a feeding tube and cannot go outside or chase balls or do any of the things it loved to do before it got sick.  But yet it's a relatively young animal and can be kept alive for years as long as it is deprived of everything it loves because those are bad for it and could possibly cause it more problems.  This poor animal is being kept alive because it's owner thinks they love it and they don't want to grieve it's death, yet every day of it's life it suffers.  If you REALLY TRULY loved this animal, you would let it go, wouldn't you?  You would have it put to sleep because that is the compassionate thing to do.  You would end its suffering and although losing it would be hard on everyone that loved it, you would all know that it was the right thing to do...right?  Because the owner that doesn't is selfish and cruel and has no compassion to end the suffering of a living being.  

Right now, that animal is me and everyone around me is talking my ear off about why I should stay alive because if I die I'm really just hurting everyone around me.  Can you see the preposterousness of that statement?  We have compassion for animals, but not people?

As I said, I don't want to die but right now, I'm barely hanging on, so what do you suppose is the most important thing for me right now?  Make my life worse by taking more things away from me...or understand that there are some needs that are imperative because they are accompanied by a will to live?  

Let me put it another way.  Diabetics are not allowed to have sugar right?  Except what happens when their blood sugar crashes and they become shaky and are about to pass out?  They are given sugar to avoid the immediate crisis of death regardless of its long term affect on their health.  It may take a month off their entire life expectancy but without it they won't live another day so you do the math.  

I'm not stupid, naive or in denial.  I'm actually very intelligent when I'm not too tired to access my brain.  There's a war being waged between my intelligence and my sensitivity.  Feelings are not rational no matter how much you try to explain things to them.  If they were, there wouldn't be so many broken hearts out in the world.  No one would love someone they aren't supposed to love and marriages would last forever.  Right now, my brain has come to the realization that there are some things my sensitivity needs to survive, much like a diabetic in a low blood sugar crisis.  Even my husband has come to that realization and supports that need.  Why can't anyone else?  

And seriously, if you think this whole thing is just a tantrum over not being able to have a cookie or some cake or something...just...omg.

[knitty kitty]

I disagree. Vitamin D supplements do not cause kidney stones.  Look here:

https://www.ncbi.nlm.nih.gov/pubmed/23739765

"Short-term nutritional vitamin D repletion in stone formers with vitamin D deficiency also does not appear to increase urinary calcium excretion."  

In plain English, taking vitamin D when it is low does not increase the calcium going through the kidney. Calcium is used to make those kidney stones. 

However, a deficiency of pyridoxine, B6, has a propensity to contribute to stone formation.  

https://www.ncbi.nlm.nih.gov/pubmed/10203369

"Large doses of vitamin B6 may reduce the risk of kidney stone formation in women."

You said your B12 was through the roof.  You MAY be experiencing toxic levels.

https://abouttesting.testcountry.com/2010/02/10-important-side-effects-of-too-much-vitamin-b12-that-people-don’t-think-about.html

 http://vitamins.lovetoknow.com/Side_Effects_of_Too_Much_Vitamin_B12

http://www.livestrong.com/article/26012-side-effects-much-b12/

Too much vitamin B 12 can cause gastrointestinal inflammation, diarrhea, breathing problems, anxiety and panic attacks.

You may be taking way too much B12 if you are taking Zip Fizz AND "the adeno form of B 12".  

Hypersensitivity to seemingly everything can be a symptom of molybdenum deficiency.  Molybdenum is a trace mineral the body needs to break down histamine.  Histamine is released when the body is exposed to an allergen.  Too much histamine is detrimental to the body.

https://www.ncbi.nlm.nih.gov/pubmed/17490952

This article explains why you feel better on gluten:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/

You're not alone.  I understand what you are going through.  I truly understand.  I was severely malnourished.  I developed a niacin (B3) deficiency and deficiencies of other nutrients.  Not having enough niacin (and other nutrients like omega 3 fatty acids) affects your brain function and your thinking.  Certain foods tasted like different colors.  Changes in mood, intensity of emotions, the desperation, all happened to me when I was deficient.  

I encourage you to stop taking all that B12 for a while.  Check with your doctor about your deficiencies and your B12 excess and Vitamin D 3 supplementation.  Get on a good vitamin and mineral supplement that has 50 to 100 mg of all the eight B vitamins together.  

All avenues have not been exhausted, so that little pet needs to stick around a bit longer.  I went through a horrible time because my nutritional deficiencies were overlooked and discounted by medical professionals. Don't let my experience be for naught.  Get your deficiencies corrected.   Please don't give up on finding answers.  

Hope this helps.

K?

 

 

 

 

 

 

 

[Ennis-TX]

B Vitamins have to be balanced one of the reasons I suggest a blend like Liquid Health Stress & Energy at half dose 3 times a day in combination with half dose of Nurological Support.  Those snack packs had almonds in them....try almond butter much easier to digest, good fats, mix in a bit of coconut oil if you can for some saturated fats I am thinking a liquid shake diet is going to be what your going to have to do to keep from getting full with that sleeve. I think part of your issues is your starving for certain nutrients, See if you can find a liquid multivitamin perhaps liquid health has one you can stomach. OH if Magnesium Calm causes to much issues try Doctors Best in the powdered form MUCH easier on the stomach. Calm is suggested to those with constipation in combination, and normally I suggest starting at 1/8th the does or starting at 1/4 tsp with CALM. THERE is a Celiac Meal Replacement Shake by Pioneer Labs. I might suggest it as it is balanced to help your gut heal and get you nutrients.

https://www.luckyvitamin.com/p-166491-pioneer-celiac-support-comprehensive-clear-meal-rice-protein-shake-natural-vanilla-flavor-17-78-oz  

^This is a thin shake, I personally have a few issues with but at times when I am really not right I use a bit of it as a supplement to my shakes. It has a very diverse array of nutrients and is specifically formulated for people with Celiacs blend it with water or a nut milk of choice. Should help get you some much needed nutrients and best part is you can just sip on it throughout the day, keep it in a shaker bottle.

 

PS that cheesey garlic great I mentioned....IS MUCH BETTER REHEATED, it uses a vegan cheese in the dough, so when you reheat it the cheese remelts making it all glorious and softer then then fresh baked, and since there is no gluten or starch flours it does not become chew or gummy when reheated but softer and more melt in your mouth, and it freezes for up to 6 months. FOR NOW stick to a liquid diet but just a thought for later. OH and starving diet is a really bad idea, as your body instantly converts and stores all it can (as fat) for food for later....best diet plan I have seen for most people is a high fat/protein diet and forced ketosis which gears your body to eat fat for fuel not carbs or sugars, then you only eat fats and protein and do a intermittent fasting, where your body will instantly turn to fat stores present for fuel and get them instead, I learned this earlier in the year while looking into body building. Seems that how they get that lean sculpted look lol. Sorry randomly distraction.

[ravenwoodglass]

4 hours ago, Another PO'ed Celiac said:

 

 

You guys keep repeating to me to eat or not eat the same things over and over.  I can't tolerate most whole foods...that includes fruits, vegetables, meats and grains!  Thank my sleeved stomach for that.  Yeah I fully realize that is what I'm supposed to be eating but I CAN'T AND IT'S NOT MY FAULT!

Have you spoken with the doctor that did the sleeve?  I wonder if there may be a problem with either the way that it was done or a complication. You need to be able to eat and it sounds like it is the sleeve that is causing you to not be able to do so. I haven't read the whole thread so forgive me if this thought has already been expressed.

Have you tried overcooking veggies and fruits so that they are a mush. That might be easier to digest. Baby food might also be helpful.

Ennis suggested liquid forms of vitamins that may be helpful until you get to the point where you can eat real food.  Do be sure to check with your doctor about how long to discontinue taking supplements before your levels are checked. That needs to be done periodically while you are healing.

I hope things get better for you soon.

[Jmg]

5 hours ago, Another PO'ed Celiac said:

 There is a website I check for reference and they were listed as safe so I'm going to have to recheck my sources I guess...in the future, when I actually care again.

You do care, you wouldn't have come back to the forum if you didn't, deep down.

5 hours ago, Another PO'ed Celiac said:

I'm not stupid, naive or in denial.  I'm actually very intelligent when I'm not too tired to access my brain.

Intelligence has nothing to do with it, nor naivety for that matter. I'm intelligent enough to realise that!   Seriously, anyone can be in denial and practically everyone will be at some point. I'm not saying you are, but a lot of your posts are suggestive of that. In any case, whatever the issue, you need to think about some counselling to help you with the mental side whilst pursuing some of the advice above for the physical. You won't fix one without the other. 

 

5 hours ago, Another PO'ed Celiac said:

It's completely pointless for me to cook when 2 bites has me full.

The point is the world outside your room and the loved ones and experiences you can have with them. Not the food, but how a change in diet could unlock your potential and allow you to enjoy life again.  If you only have 2 bites so what? That's what fridges and freezers are for. 

I'll say one more thing then this is me done. There's a lot of people here with fantastic knowledge on practical steps you can take. Ennis has identified a potential slip on the gluten-free diet that could explain a lot of your discomfort and given you some new food ideas, Victoria has a suggestion about the gastric band and celiac, Cycling Lady has given you good context on celiac recovery rates and Knitty Kitty fantastic knowledge about vitamins which could explain how you can still be deficient despite tests suggesting otherwise. 

There's a lot of positive info and potential next steps there for you, but at the moment you're not seeing it. You're seeing obstacles, impediments, blocks. This is your mind working against you. I suspect you're depressed and suffering from negative automatic thoughts which make it very difficult to make any progress whatever the reality of the situation. I may be wrong but this is exactly the position I was in for a very long time. I think the more intelligent you are the worst your problem to be honest because your mind is working against you. 

So, please consider asking for some help in changing the way you look at this. Either some cognitive behavioral therapy or some old school talking therapy. Either will help, as will getting more sunlight, regular walks, speaking to friends etc. 

I wish you the very best of luck. Hope things improve for you soon.

Matt

 

 

 

[squirmingitch]

1) In the Sargento stuff you're eating, I see SOY, in every. single. one. many of us do not do well with soy, especially in the beginning. For some, soy is anathema for years, maybe for life.

2) I heard you loud & clear about cooking sooooooooo

Ensure, Boost, whatever brand, those nutritional drinks. You have a mini fridge in your room you can keep them in. You shouldn't have any problem digesting those & they shouldn't cause problems with your gastric sleeve and they should give you good nutrition. It won't matter if you only can drink a 1/4 cup or a 1/3 cup or a 1/2 cup at the time. You can open a can, pour some in a cup & refill the cup as you feel you can drink more.

[Victoria1234]

17 hours ago, squirmingitch said:

1) In the Sargento stuff you're eating, I see SOY, in every. single. one. many of us do not do well with soy, especially in the beginning. For some, soy is anathema for years, maybe for life.

2) I heard you loud & clear about cooking sooooooooo

Ensure, Boost, whatever brand, those nutritional drinks. You have a mini fridge in your room you can keep them in. You shouldn't have any problem digesting those & they shouldn't cause problems with your gastric sleeve and they should give you good nutrition. It won't matter if you only can drink a 1/4 cup or a 1/3 cup or a 1/2 cup at the time. You can open a can, pour some in a cup & refill the cup as you feel you can drink more.

If you go with ensure etc. pls read the labels as they do often contain soy (usually for the protein source)  if you are sensitive, and of course milk if you are sensitive. Many of us here are sensitive to soy and or milk so you test to see if this may be an issue for you. Carrageenan is in those drinks as well. Actually it's in just about anything that needs to stay thickened, without shaking. 

[Joyful joanna]

Get another opinion on your gastric sleeve. In 2014 I was Dx with a giant para esophageal hernia. In other words my stomach was in my chest. I had a surgery to pull my stomach back into my abdomen. Two months later I am suffering. Collapsed left lung, vagal nerve compression and now my stomach was back in my chest pulling my small intestine into my chest. My heart was being irritated by all this. I had tourtion of my stomach. Long story short I saw a thoracic surgeon at John's Hopkins Hospital. The following day I had a five and a half hour surgery to save my life. The first idiot surgeon had stitched the top of my stomac to my diaphragm. Two years prior to this I got bitten by a deer tick and got chronic Lyme disease. I am now allergic to red meat, carry an epi pen. A year before tHat I was electrocuted getting out of my swimming pool with resultant burns, cardiac issues etc. The electrician said I should be dead, but I survived.

And, I was Dx with celiac disease at 71! Talk about big adjustments. Times are very difficult for you right now. I am a retired psychotherapist and I think you would benefit from some cognitive behavioral therapy. I am a super sensitive person too, so I have an idea about how you are struggling. Do not give up! Get a second opinion. Something seems amiss with your sleeve, get it checked out.

Withdrawing from gluten was very difficult for me. My body reacted horribly, but I got through it knowing that it would get better, and it did. I have the same autoimmune reaction to carraggenan. It is made with seaweed, the wheat of the sea, and the food industry is putting it in everything as a cheap emulsifier. Read your labels, you may be reacting to carrageenan too. MSG is also made with seaweed.

Please do not give up! I have fired seven doctors in the past 10 years to get a great group of doctors that think outside the box and are not "cookbook doctors", they are a dime a dozen. Push on keep looking for answers. Put on you brass bra and confront the bad behavior you are encountering from the medical profession. Question, question, question. Good doctors welcome an intelligent well informed patient. It is the flakes that don't want to answer question or give sane explanations. Hope this is helpful. The world needs all the intelligent, sensitive people we have in it. Good luck!

[Another PO'ed Celiac]

I CAN'T EAT WHOLE FOODS BECAUSE OF MY SLEEVED STOMACH AND I'M BEING TOLD TO CUT OUT EVERYTHING PROCESSED.  SERIOUSLY?  I have literally been told not to eat every single food out there by a combination of difference sources.  By the way, supplements are processed.  So are protein drinks and anything that comes in a can.

I am not lacking in any vitamin or mineral except for vitamin D and I have had many many tests.  This is why nutritionists and naturopaths are stumped.  Not only are my tests in normal ranges..they are practically in perfect normal ranges, right in the middle.  I have taken Vitamin D supplements 3 times, different kinds and got kidney stones all 3 of those times.  You can disagree all you want but I can't change the fact that it happened.  NO, it's not common and no it's not normal but what do you think I can do about it?  I have a bit too much B12 in my system...my tests said greater than 1500.  It's because the form I consume is not a form that my body can use.  I can't use the methyl form, which is why I'm on the hydroxy/adeno forms.  My body requires those specific forms to function and my concentration improved greatly when I began taking it so no, I won't be stopping the B12.   

I had my sleeve done in Mexico so no I can't go back to my sleeve doctor.  I've had tons of imaging and everything looks fine with it.  The endo found mild chronic gastritis...that's it.  It stated that the sleeve looked great otherwise.

I appreciate the notions but I'm done researching every little chemical or vitamin or mineral or organic compound or this combination or that one...because there are far too many and I have far too little time, energy and attention span.  I'm not a chemical engineer nor do I feel like being a science experiment.  It would take a lifetime to figure it all out and I don't have that much time since my doctors and I suspect that I have the vascular form of Ehlers Danlos.  I plan on enjoying what little life I have left to the best I can and my loved ones understand and appreciate that.  The risks associated with gluten ingestion in a Celiac are far less when there's not enough time for the damage to build up and cause problems anyway.   

Thank you for trying to help but I'm a lost cause.  I came here for help in figuring out what could cause a false positive in a Celiac and I've gotten everything but.  I'm glad you all have it figured out and are able to live your lives but telling me what to do is not helpful when it is all stuff I have already tried on my own and found not helpful.  And as I said before, I have a therapist who is great and helps me out a lot but there isn't a therapy in the world that can get me through this, nor will I ever touch an anti-depressant.  Everyone has their method and thinks they have it figured out and that's great but the problem is that I won't ever know unless I try all these things one by one and I don't have the energy or will to do so, nor can I afford it.  (And I love how everyone says your health is worth the expense.  That's nice, where do you expect the money will come from when it's not in my possession to spend on my health?)

 

 

[Another PO'ed Celiac]

BTW...I don't have diarrhea!  And have been through the battery of tests for autoimmune disease and they have all been normal.  I have been told by a very reputable doctor who is up on all the latest research and is brilliant and highly regarded in his field that the chances that I have an autoimmune disease with these kinds of numbers is astronomical.  Something else is going on and he's determined to find it.  Sorry but I don't see how it's possible to have Celiac which is an autoimmune disease, without some kind of test showing I have an autoimmune response.  These are not the normal standard tests, these are specialty tests that can pick up minute patterns that normal autoimmune tests can't.  Mine were normal...all of them.

[Ennis-TX]

Yeah after reviewing that is why I suggested that protein shake, liquid form, easy to digest, all the nutrients you need. The way the shake is made is with sourced pure vitamins and minerals avoiding using actual foods containing them....this is a huge thing with avoiding intolerance in my opinion. I also have a few other options on supplements but seems you ahve that under control....Yeah I hear you on the B vitamins, my doctor told me to scale back on them once....I felt like crap, upped it right back up. Also yes this diet is very expensive....I had to start doing gluten free baked goods at the farmers market to pay for my own food. I think I spend about 500-600 on food and supplements a month for just me.

[AAtroposP71]

Here's a list of things that might cause a false positive biopsy for celiac that aren't celiac.

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

INCOMING RANT, but I hope it'll help in a way, if for no other reason than to validate your feelings.

I can fully understand the frustration. At this stage in the game I seem to react to nearly everything too. My diet has been reduced basically to chicken, beef, gluten free bacon, and sweet potatoes. I've been told to cut this that and the other thing, to take this that and the other thing, do this, don't do this, contradictory information and quite honestly, an overload of information that my broken, pea soup fogged brain can't process anyway. It can also be frustrating when you clearly state something just to have 3 more people ask about it again. It's something I quickly picked up on here. I love all you guys and thank you all for trying to help, but you really need to read better... Seriously.

I agree with you on the spare no expense thing. I've been sick for 8 months, gluten free for almost 4, can't work because of this BS and have already burned through half of the $15k in savings I had built up over the years. I spend at least 5x more on food than I did before this. I can't get disability yet though because I don't have enough tests and doctors and psychologists to say I can't work yet, but every time I go to schedule something with them I get the, "Yeah we can get you in 3 months form now", just for me to come in and have an "initial consultation" and be told to come back in 3 months. What a #^#$% joke.

All I do is sleep and eat and I'm still 100 lbs. I'm 29 and have to live with and be taken care of by my mom, who really doesn't need the added burden, and not only do I feel horrible about it, but it also feels degrading and dehumanizing, like I'm a little kid that needs his mommy again.

This could have manifested any other way and I'd be fine, but no, I get the brain fog, the feeling like I'm in a dream, like nothing is real, I question reality constantly. It had to crop up in the way that plays on my biggest fear. Not only that but because I can't concentrate, I can barely drive and don't feel comfortable doing it, which was my only outlet I ever had for problems and frustration. I can't even play videogames most of the time anymore. I actually hate being awake, because at least in my dreams I'm able to do things other than lay here and rot away. It's the only way I can even distinguish dreams from reality now. If I'm doing something, I'm probably asleep.

Quality of life is a big bold zero. I honestly consider taking a dose of 7.62x54R aspirin on a daily basis, and the only thing that keeps me from it is that I think I am starting to see SOME improvement, even if it's minute and I can't trust the better days to stick around before the derealization and panic attacks come swooping back in again. I really can't blame you for giving up. I want to give up every day. I don't care at this point if I get better or if I die, either is preferable to this in-between purgatory I've been banished to.

Again, didn't mean to hijack your thread or anything, but like you said, logic can only take you so far. I've always been a very logic driven person myself, but when you're subjected to inescapable physical and especially mental torture, feelings happen unfortunately.

At least now you know you're not alone in feeling the way you do about the whole thing. Sometimes more and more heaps of information are meaningless and you just need to have your feelings validated. I hope you figure it out and get a chance to live again, but hey, if you don't, here's hoping you can at least go out with a bang instead of a whimper.

[Ennis-TX]

12 minutes ago, AAtroposP71 said:

Here's a list of things that might cause a false positive biopsy for celiac that aren't celiac.

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

INCOMING RANT, but I hope it'll help in a way, if for no other reason than to validate your feelings.

I can fully understand the frustration. At this stage in the game I seem to react to nearly everything too. My diet has been reduced basically to chicken, beef, gluten free bacon, and sweet potatoes. I've been told to cut this that and the other thing, to take this that and the other thing, do this, don't do this, contradictory information and quite honestly, an overload of information that my broken, pea soup fogged brain can't process anyway. It can also be frustrating when you clearly state something just to have 3 more people ask about it again. It's something I quickly picked up on here. I love all you guys and thank you all for trying to help, but you really need to read better... Seriously.

I agree with you on the spare no expense thing. I've been sick for 8 months, gluten free for almost 4, can't work because of this BS and have already burned through half of the $15k in savings I had built up over the years. I spend at least 5x more on food than I did before this. I can't get disability yet though because I don't have enough tests and doctors and psychologists to say I can't work yet, but every time I go to schedule something with them I get the, "Yeah we can get you in 3 months form now", just for me to come in and have an "initial consultation" and be told to come back in 3 months. What a #^#$% joke.

All I do is sleep and eat and I'm still 100 lbs. I'm 29 and have to live with and be taken care of by my mom, who really doesn't need the added burden, and not only do I feel horrible about it, but it also feels degrading and dehumanizing, like I'm a little kid that needs his mommy again.

This could have manifested any other way and I'd be fine, but no, I get the brain fog, the feeling like I'm in a dream, like nothing is real, I question reality constantly. It had to crop up in the way that plays on my biggest fear. Not only that but because I can't concentrate, I can barely drive and don't feel comfortable doing it, which was my only outlet I ever had for problems and frustration. I can't even play videogames most of the time anymore. I actually hate being awake, because at least in my dreams I'm able to do things other than lay here and rot away. It's the only way I can even distinguish dreams from reality now. If I'm doing something, I'm probably asleep.

Quality of life is a big bold zero. I honestly consider taking a dose of 7.62x54R aspirin on a daily basis, and the only thing that keeps me from it is that I think I am starting to see SOME improvement, even if it's minute and I can't trust the better days to stick around before the derealization and panic attacks come swooping back in again. I really can't blame you for giving up. I want to give up every day. I don't care at this point if I get better or if I die, either is preferable to this in-between purgatory I've been banished to.

Again, didn't mean to hijack your thread or anything, but like you said, logic can only take you so far. I've always been a very logic driven person myself, but when you're subjected to inescapable physical and especially mental torture, feelings happen unfortunately.

At least now you know you're not alone in feeling the way you do about the whole thing. Sometimes more and more heaps of information are meaningless and you just need to have your feelings validated. I hope you figure it out and get a chance to live again, but hey, if you don't, here's hoping you can at least go out with a bang instead of a whimper.

I have this odd inkling we would get along great and my safe home and being able to cook could help out lol. >.< I share a building with a automotive machine shop in the other half.

[AAtroposP71]

Haha maybe. Between the cars, the heavy metal you mentioned, and that in Texas you're not limited to 5 round bolt action rifles and pump shotguns. I do love it here in NY but it kinda sucks for that.

I'll quit now before I derail the topic.

[Claire grace]

On 8/12/2017 at 0:04 AM, Another PO'ed Celiac said:

I posted a huge tantruming rant back when I first diagnosed.  No idea how I would get through the misery.  It wasn't easy and there were times I didn't care if I lived or died, but I still did it.  I weaned down off the gluten because otherwise there was no way.  The initial severity of the misery got better, but it HAS NEVER GONE AWAY AND MY STOMACH PROBLEMS ARE WORSE THAN EVER!  I have gotten sicker and sicker and more and more miserable rather than better.  I went months of not leaving my house other than doctor appointments, only eating gluten free food from home and am now bed bound.  I eliminated most everything from my diet, but somehow my vitamin levels and blood work keep coming back in normal ranges...how the heck is that possible?  I haven't really lost any weight (which I don't understand because I hardly eat) and at times have even gained a few pounds from being bloated.  I was diagnosed with Candida and was on fluconazole for a little more than a month, becoming more and more miserable.  My stomach completely tied up in knots all the time, abdominal pain...problems I NEVER had UNTIL I went gluten free and started eliminating all this stuff from my diet.  I have even lost a lot of vision in my left eye due to a corneal problem that the top corneal specialist in my area says he has never seen before and has no idea why.  So I'd had it.  I literally felt like I was dying and figured if I was dying anyway, I might as well enjoy some things first.  Because I didn't care if I lived or died and was pretty much in bed constantly just waiting to die.  That's not living.  7+ months of not living as my life went down the drain was enough.  I've had gluten the last week or so.  Not huge amounts, just some foods I used to enjoy that I haven't had in months.  I even had some coffee again because the constipation was just out of control.  And guess what happened?  No gut wrenching stomach cramps.  No diarrhea.  No feeling like I wanted to die.  I actually feel BETTER after my system seems to be rebooting and the constipation has improved.  No stomach pain, no sleep problems, I've even been painting and happy with what I've painted.  I've done a few things around the house and been ok.  No rage, no crying fits...what the heck????

Is there a possibility I was misdiagnosed even though my biopsy and blood work was positive for Celiac?  Is it possible there is something else going on, no matter how RARE and strange it might be?  I am always the rare strange person for everything and I cannot tell you how many times a medical professional has said, 'well that's different, I've never seen that before'.  My whole abdomen is quiet and feels better than it has since I started this gluten free nonsense.  So what if it was Candida causing the whole Celiac issue?  Because the horrible withdrawal I experienced is a hell of a lot like yeast die off.  I've come to suspect I have Ehlers Danlos Syndrome and am going through the process to get testing and I know it and Celiac have been known to go hand in hand.  I definitely have POTS, Raynauds and possibly Sjogren's, even though all of my autoimmune disease testing has been negative.  How can I have Celiac and not react to gluten?  And if Celiac is considered an autoimmune disease, then why are all my autoimmune tests negative?  

This ridiculousness makes absolutely no sense to me.  I hope someone has some experience with this because I'm about to lose my mind.  I'm far too sensitive to live my life this way! 

Strangely enough I just joined this Forum after reading your post because so much of it sounded very familiar to me. Although I do have a lot of similarities medically as far as celiac/ pots/ peripheral neuropathy/ and extremely intuitive to others feelings or emotions. What I am afraid to have to tell you is that this is normal and how it is supposed to be as far as our brains capability of having empathy and feeling emotions unfortunately for most people that has been dulled to the point of nonexistence most of their lives as a result of fluorides. When as adults we are able to heal our bodies to their normal state of sensory perception and emotional depth it is intolerable for many people who are not used to it. I have had a very similar experience especially after the birth of my daughter because during that process much of your body is recycled so to speak and rebuilt so all of these things we've had our whole lives which have been in place blocking and Dowling many of our senses and emotions are removed and for those of us with Celiac which I suspect is a much higher percentage of the population than anyone could ever imagine once we eliminate the final cushion which is much of the swelling and our bodies protective barriers to Shield us from harm by the gluten our bodies finally function as they're meant to and for those of us who have been "blind" our entire lives so to speak are extremely overwhelmed with all of this new information flooding into our brain from the senses we didn't know we had. Much like a blind person who can see for the first time or a deaf person who was able to hear for the first time it's very overwhelming especially since we are not used to these types of emotions and the safety net of being able to isolate our own feelings from that of others is now gone. The next part of this is going to be even more strange sounding if you are new to this but I assure you that suicide is not the answer because in death there is absolutely no shield from the feelings and emotions of others because you in the form of pure energy are reunited with all other energies and there is no Independence or privacy of thought or feeling. Not that this is a bad thing but if you are having trouble coping with it here let me tell you that death is not the answer. The only way for you to adjust to this is to do the best you can to eliminate sources of sadness or stress, do not watch the news,  I don't even own a TV. Take an active approach to making the lives and emotional state of all those around you better because the happier they are, the happier you will be. Don't worry so much about the details,  instead focus on goals and things that bring you joy and excitement. Art is very helpful and I find that it is absolutely essential in a happy productive life. Don't look at this as a negative thing but look at it as a positive thing that you have gained this new ability and as overwhelming as it seems now I promise in time you will not feel the same way you do now. From a medical standpoint it sounds to me like you may have parathyroid issues as well and should probably be checked for parathyroid tumors not to worry these are generally benign and most of the problems they cause which are very similar to what you've been describing as far as your nutritional issues are concerned outside of the Celiac portion can be easily remedied once it is established and tests are done to determine your parathyroid status. Because your parathyroid helps  regulate your body's pH  as well as  you are calcium and vitamin D absorption and processing  being vitamin D deficient as well as having systemic Candida/ disseminated candida infection of multiple areas of the body and digestive system are almost 90% related to a parathyroid issue. In this case taking vitamin D3 supplements can actually be harmful and cause many other uncomfortable symptoms so please do have this checked as soon as you can and avoid taking any vitamin D until you do. I hope this helps please keep updates coming so that others going through similar situations are able to follow along and see that things will get better no matter how frustrating and hopeless it seems at times.

[Another PO'ed Celiac]

Yes finally understanding!  Thank you!  This is exactly what I needed!  I keep stressing to my doctors that I think I have a thyroid issue and have been avoiding Vitamin D because my instincts are telling me to and I've learned to listen to them.  I have always been super sensitive and somewhat empathic my whole life.  I am used to to and it is exactly why I don't watch TV and am hauled up in my room and have connected with a wonderful and supportive community of like minded beginning artists, most of which have health issues of their own and we've all chosen art as an outlet.  This place is a positive wonderful environment that has saved me more than once!  

They have tested my thyroid many times and in different ways and it consistently comes back normal even though my temperature is low.  I still think it's that condition in which my body reacted to stress but is stuck and can't come out of stress mode and I likely need to be on some temporary thyroid medication but they think I'm too sick to be on it right now and have referred me to another doctor of whom I will be seeing the Monday after next.  

Yes I did see and appreciated the liquid nutrition advice but I have yet to find one that I can get past the taste of.  Also I avoid things that come in a can due to the fact that I can actually taste the metallic flavor in the food or drink within it.  I cannot stand that taste, it's awful!  I wonder if it has something to do with my metal allergies.  Not just to nickel, but also to aluminum and surgical steel etc.  I even have to use Tom's Natural deodorant because it's the only one that doesn't contain aluminum.  

The medical care in this area and from what it sounds like, in the entire country has become something to be feared.  When did doctors stop actually caring about their patients?  The problem is huge and the solution is a long windy perilous road that I don't see anyone taking during my lifetime at least.  I mean jeez...just look at who was voted into the White House if you really want to fear for the human race.  Where did common sense, empathy, compassion and intelligence go?  

Sorry, I digress...but feel free to hijack the post because now things are getting good.  haha

[cyclinglady]

2 hours ago, Another PO'ed Celiac said:

Yes finally understanding!  Thank you!  This is exactly what I needed!  I keep stressing to my doctors that I think I have a thyroid issue and have been avoiding Vitamin D because my instincts are telling me to and I've learned to listen to them.  I have always been super sensitive and somewhat empathic my whole life.  I am used to to and it is exactly why I don't watch TV and am hauled up in my room and have connected with a wonderful and supportive community of like minded beginning artists, most of which have health issues of their own and we've all chosen art as an outlet.  This place is a positive wonderful environment that has saved me more than once!  

They have tested my thyroid many times and in different ways and it consistently comes back normal even though my temperature is low.  I still think it's that condition in which my body reacted to stress but is stuck and can't come out of stress mode and I likely need to be on some temporary thyroid medication but they think I'm too sick to be on it right now and have referred me to another doctor of whom I will be seeing the Monday after next.  

Yes I did see and appreciated the liquid nutrition advice but I have yet to find one that I can get past the taste of.  Also I avoid things that come in a can due to the fact that I can actually taste the metallic flavor in the food or drink within it.  I cannot stand that taste, it's awful!  I wonder if it has something to do with my metal allergies.  Not just to nickel, but also to aluminum and surgical steel etc.  I even have to use Tom's Natural deodorant because it's the only one that doesn't contain aluminum.  

The medical care in this area and from what it sounds like, in the entire country has become something to be feared.  When did doctors stop actually caring about their patients?  The problem is huge and the solution is a long windy perilous road that I don't see anyone taking during my lifetime at least.  I mean jeez...just look at who was voted into the White House if you really want to fear for the human race.  Where did common sense, empathy, compassion and intelligence go?  

Sorry, I digress...but feel free to hijack the post because now things are getting good.  haha

Thyroid and parathyroid are not the same thing as they have completely different functions.  

[Ennis-TX]

7 hours ago, Another PO'ed Celiac said:

The medical care in this area and from what it sounds like, in the entire country has become something to be feared.  When did doctors stop actually caring about their patients?  The problem is huge and the solution is a long windy perilous road that I don't see anyone taking during my lifetime at least.  I mean jeez...just look at who was voted into the White House if you really want to fear for the human race.  Where did common sense, empathy, compassion and intelligence go?  

Most doctors only care about the money, you to find one that cares and is knowledgeable. Compassion...yeah if your a normmy, do not have any AI issues, or obviously do not care enough to take care of your own body (various things form my judgement), then your at the bottom of my list. I will prioritize showing help to those who have helped me, those who I can relate to, and those who seem to care. I have been that kicked sick puppy on the side of the road to know most of these "Humans" are not worth my personal time and effort. This might sound heatless but in all honestly if I can not relate, or directly connect you to my life I should not worry or drive myself into a corner trying to help you when I am struggling myself and would and have not been helped.   Call it heartless, I am just setting priority for those I CAN best help and serve over those who I can't effectively with a side equation of who has helped me or would directly effect my daily life.    Maybe doctors use a similar thought process involving money, billing, what pills they can give you, and their area of expertise?

[knitty kitty]

15 hours ago, cyclinglady said:

Thyroid and parathyroid are not the same thing as they have completely different functions.  

 

18 hours ago, Another PO'ed Celiac said:

Yes finally understanding!  Thank you!  This is exactly what I needed!  I keep stressing to my doctors that I think I have a thyroid issue and have been avoiding Vitamin D because my instincts are telling me to and I've learned to listen to them.  I have always been super sensitive and somewhat empathic my whole life.  I am used to to and it is exactly why I don't watch TV and am hauled up in my room and have connected with a wonderful and supportive community of like minded beginning artists, most of which have health issues of their own and we've all chosen art as an outlet.  This place is a positive wonderful environment that has saved me more than once!  

They have tested my thyroid many times and in different ways and it consistently comes back normal even though my temperature is low.  I still think it's that condition in which my body reacted to stress but is stuck and can't come out of stress mode and I likely need to be on some temporary thyroid medication but they think I'm too sick to be on it right now and have referred me to another doctor of whom I will be seeing the Monday after next.  

Yes I did see and appreciated the liquid nutrition advice but I have yet to find one that I can get past the taste of.  Also I avoid things that come in a can due to the fact that I can actually taste the metallic flavor in the food or drink within it.  I cannot stand that taste, it's awful!  I wonder if it has something to do with my metal allergies.  Not just to nickel, but also to aluminum and surgical steel etc.  I even have to use Tom's Natural deodorant because it's the only one that doesn't contain aluminum.  

The medical care in this area and from what it sounds like, in the entire country has become something to be feared.  When did doctors stop actually caring about their patients?  The problem is huge and the solution is a long windy perilous road that I don't see anyone taking during my lifetime at least.  I mean jeez...just look at who was voted into the White House if you really want to fear for the human race.  Where did common sense, empathy, compassion and intelligence go?  

Sorry, I digress...but feel free to hijack the post because now things are getting good.  haha

I believe Cycling Lady has hit the bull's eye.  Hypoparathyroidism can be caused by excessive caffeine consumption.  That Zip Fizz contains Guarana.  Guarana contains high levels of caffeine.  Plus you're drinking coffee again.  High doses of caffeine cause the parathyroid to secrete less of its hormone.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4207951/

Hypoparathyroid has similar symptoms to yours.  

"Calcium replacement or vitamin D can ameliorate the symptoms but can increase the risk of kidney stones and chronic kidney disease.^[1]"

https://en.m.wikipedia.org/wiki/Hypoparathyroidism

NOT A DOCTOR.  

I'm a microbiologist.  (Like Amy Farrah Fowler on The Big Bang Theory.)

Just presenting one possibility.  Not meant as a diagnosis.  

L-theanine helps take the edge off jittery nerves caused by caffeine.  

Hope you feel better.

[Another PO'ed Celiac]

14 hours ago, Ennis_TX said:

Most doctors only care about the money, you to find one that cares and is knowledgeable. Compassion...yeah if your a normmy, do not have any AI issues, or obviously do not care enough to take care of your own body (various things form my judgement), then your at the bottom of my list. I will prioritize showing help to those who have helped me, those who I can relate to, and those who seem to care. I have been that kicked sick puppy on the side of the road to know most of these "Humans" are not worth my personal time and effort. This might sound heatless but in all honestly if I can not relate, or directly connect you to my life I should not worry or drive myself into a corner trying to help you when I am struggling myself and would and have not been helped.   Call it heartless, I am just setting priority for those I CAN best help and serve over those who I can't effectively with a side equation of who has helped me or would directly effect my daily life.    Maybe doctors use a similar thought process involving money, billing, what pills they can give you, and their area of expertise?

Totally understandable and respectable.  Like an addict who can't be helped until they want to be...

[Another PO'ed Celiac]

Thank you for the clarification on thyroid and parathyroid.  I was too tired to look it up last night.  I am not jittery and don't consume a lot of caffeine.  1 zipfizz has less caffeine in it than a cup of coffee.  And I just started back up coffee yes, but it's about half a cup a day.  That I drink throughout the morning and the zipfizz throughout the afternoon/early evening so it's spread out through the day and not actually a lot.  I have plenty of calcium in my body so I don't need more of that but I have been trying to add in the magnesium.  Magnesium Calm is horrible on my system but the RelaxMax seems to be ok for now.  I am looking at ways of getting in some more vitamin D in natural ways though I'm still wary of it for what it did to me before.  I think I'm going ot have to wait to see what my doctor finds out before messing too much with more supplements...especially given the fact that I have no evidence of malabsorption anywhere.  Not losing weight, not wasting away, no diarrhea...nothing like that.  And since I've added the hydroxy/adeno forms of B12, my brain has been getting consistently clearer and my neurological symptoms are vanishing.  I do have a IgG4 deficiency which suggests common variable immune deficiency which leads to repeated ear, sinus and lung infections...of which I've had many!  As a child I had constant ear infections leading to the placement of many ear tubes, an adenoidectomy, a tonsillectomy and another adenoidectomy as they apparently grew back 'double'.  As an adult I've had a few ear infections, but many sinus ones and have even been hospitalized for a lung infection including having a lung biopsy.  Looks like it's very possible that I don't have Celiac after all.  It's very possible that CVID, Candida and my body reacting to diary could be to blame for my diagnosis.  As I said, I tend to be very intuitive about my health and something was just not sitting right with me about this Celiac diagnosis.  I can't say for sure yet, but something is definitely off.  I'm not going to go crazy on the gluten but I'm not going to purposely avoid it either.  Because it seems to be making no difference to my body right now, good or bad.  That just doesn't seem right.  Leave it to me to have something  rare and weird as has literally been my whole life!

[ShanaD]

On 8/12/2017 at 2:04 AM, Another PO'ed Celiac said:

I posted a huge tantruming rant back when I first diagnosed.  No idea how I would get through the misery.  It wasn't easy and there were times I didn't care if I lived or died, but I still did it.  I weaned down off the gluten because otherwise there was no way.  The initial severity of the misery got better, but it HAS NEVER GONE AWAY AND MY STOMACH PROBLEMS ARE WORSE THAN EVER!  I have gotten sicker and sicker and more and more miserable rather than better.  I went months of not leaving my house other than doctor appointments, only eating gluten free food from home and am now bed bound.  I eliminated most everything from my diet, but somehow my vitamin levels and blood work keep coming back in normal ranges...how the heck is that possible?  I haven't really lost any weight (which I don't understand because I hardly eat) and at times have even gained a few pounds from being bloated.  I was diagnosed with Candida and was on fluconazole for a little more than a month, becoming more and more miserable.  My stomach completely tied up in knots all the time, abdominal pain...problems I NEVER had UNTIL I went gluten free and started eliminating all this stuff from my diet.  I have even lost a lot of vision in my left eye due to a corneal problem that the top corneal specialist in my area says he has never seen before and has no idea why.  So I'd had it.  I literally felt like I was dying and figured if I was dying anyway, I might as well enjoy some things first.  Because I didn't care if I lived or died and was pretty much in bed constantly just waiting to die.  That's not living.  7+ months of not living as my life went down the drain was enough.  I've had gluten the last week or so.  Not huge amounts, just some foods I used to enjoy that I haven't had in months.  I even had some coffee again because the constipation was just out of control.  And guess what happened?  No gut wrenching stomach cramps.  No diarrhea.  No feeling like I wanted to die.  I actually feel BETTER after my system seems to be rebooting and the constipation has improved.  No stomach pain, no sleep problems, I've even been painting and happy with what I've painted.  I've done a few things around the house and been ok.  No rage, no crying fits...what the heck????

Is there a possibility I was misdiagnosed even though my biopsy and blood work was positive for Celiac?  Is it possible there is something else going on, no matter how RARE and strange it might be?  I am always the rare strange person for everything and I cannot tell you how many times a medical professional has said, 'well that's different, I've never seen that before'.  My whole abdomen is quiet and feels better than it has since I started this gluten free nonsense.  So what if it was Candida causing the whole Celiac issue?  Because the horrible withdrawal I experienced is a hell of a lot like yeast die off.  I've come to suspect I have Ehlers Danlos Syndrome and am going through the process to get testing and I know it and Celiac have been known to go hand in hand.  I definitely have POTS, Raynauds and possibly Sjogren's, even though all of my autoimmune disease testing has been negative.  How can I have Celiac and not react to gluten?  And if Celiac is considered an autoimmune disease, then why are all my autoimmune tests negative?  

This ridiculousness makes absolutely no sense to me.  I hope someone has some experience with this because I'm about to lose my mind.  I'm far too sensitive to live my life this way! 

Sounds a lot like my problems.   I'm not exactly the same, but I have neurosarcoidosis in addition to celiac.  Neurosarcoidosis causes granulomas to grow in your body, in this case in the nervous system.  In my case the spinal meninges.  That means any nerve from the spinal cord that has to squeeze through the inflamed meninges (all of them do) can be damaged and you have seemingly unrelated symptoms.  

I believe Constipation is celiac due to slow digestion.  A very common celiac symptom.   I had to get all the meds including stool softener, laxative, nexium, Align probiotics, and gas X.  You'd be shocked how much came out of my belly!   You don't want to know.  But if your gut is full of Crap it's gonna make you miserable.  Coffee is gonna make you go and you'll feel so much better.  But taking these medicines daily will clean you out, all the time and feel 10x better.   

I also have many visual symptoms including cluster migraines (one eye in terrible pain). These are also known as the suicide headache).  I have visual attacks 24 hours after gluten exposure even cross contamination.  I also now blow up like a balloon when this happens.  

This needs to be checked on you - do testing for sarcoidosis.  Also, have them check your spinal fluid.  Yes that means spinal tap.  This may help doctors identify and diagnose if you have another autoimmune issue but neurological instead of in the rest of your body.  Sarcoid usually affects the rest of the body and can grow granulomas anywhere, but usually the EYES lungs and heart.  Doctors have a hard time knowing what sarcoid is - you need to go to a specialist.  

Candida is a common problem with celiac.  getting your gut straightened out using a probiotic is probably necessary. I use Align based on research on which specific bacteria strain I should take for my symptoms. It works for me. Before that,  I suffered for months with recurring yeast infections - not big just underlying irritation - until I learned it's a celiac symptom.  The probiotics balancing the gut flora out cleared that up.  

Aall my blood work is normal too.  I have no "unexplained weight loss" due to celiac or sarcoid.  I need to loose 30 lbs but I am not unhealthy otherwise.   This thing over the course of 2 months has put me on bedrest, sent me to the hospital twice (12 days total stays) , and has given me blood clots in my legs which has gone to my lungs.  All side effects of not being treated for the sarcoid yet.  The point is your symptoms could be that or something similar and neurological in addition to celiac.  

Sounda like you're doing good on the gluten free diet but you could be being exposed to cross contamination.  Quaker oatmeal nearly KILLED me because I thought they'd be fine since they're not gluten.  But it turns out they're harvestes with the same equipment as wheat, and processed on the same equipment as wheat, and so they're not gluten free.  After eating those Quaker Oats, I had the worst gluten attacks of my life.  So my point is ANY gluten even surprise gluten cross contamination could be keeping you sick.  I'm also reading your message and I'm convinced your second problem may be also neuro as well.  

I wish you all the best and chase this  down and find help. You are your own best advocate.  

[Jmg]

On 8/15/2017 at 6:30 PM, Another PO'ed Celiac said:

I'm glad you all have it figured out and are able to live your lives

It's easy to read others giving advice and think that but it's likely far from the truth. Everyone will be struggling with various things in their life in their own way. They may be doing better at the moment on one aspect but not another!

On 8/15/2017 at 8:28 PM, AAtroposP71 said:

It can also be frustrating when you clearly state something just to have 3 more people ask about it again. It's something I quickly picked up on here. I love all you guys and thank you all for trying to help, but you really need to read better... Seriously.

Yes I'll hold my hands up. I didn't notice APC's point about her therapist. Sometimes I'm only leaping on the forum for a short amount of time and I don't spend as much time reading posts as I should and miss something. So apologies for that APC, I meant well and do wish you the best of luck. 

[Another PO'ed Celiac]

Just thought I'd post an update in case people are curious.  I got the results of genetic testing.  I do have the 'Celiac gene' but it looks like I also have HFE hemochromatosis.  This actually explains a lot... scarily a lot.  Not sure where I'm going from here.  Still frustrated beyond belief.  NOT doing the blood draining treatment thing.  I don't know how advanced my case is yet.  I have more testing to do when I'm able to tolerate it.  Just fed up and don't want to be messed with anymore.  I've got POTs and am showing more and more heart issues meaning my stimulants will be taken away and I'll be back to sleeping my life away.  Not sure what the point of anything even is after that.  Funny thing is that Social Security Disability has picked this time for a review and somehow thinks I'm better and capable of 'some work'...now...at this time when I'm sicker than I've ever been.  How is that for irony?