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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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! 

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Jmg    195

Hi again :)

I can see your not in a good place at present, but you've taken a positive step in posting here again and looking for help. This was from your earlier post:

Quote

42 year old mom of 3, just diagnosed in December...Merry Christmas to me.  Biopsy Marsh Score 3A plus the following blood work:

IgA, Serum    196 mg/dL    80 - 463 mg/dL

Gliadin Antibody (IgA)    22 U    <20 U
Gliadin Antibody (IgG)    52 U    <20 U
   
Tissue Transglutaminase Antibody    14 U/mL    U/mL

Doc says yep you've got Celiac.  Avoid gluten and you'll be fine.  But I don't have intestinal problems.

So you have your diagnosis but as you said at the time you rejected it because you don't have intestinal problems.  The fact is that the majority of celiacs don't present with intestinal problems, at least as a primary indicator. Take a look at this list:

https://glutenfreeworks.com/gluten-disorders/symptom-guide/

See anything you recognise? Your POTS is one example, I have that too, but strict adherence to the gluten free diet, along with healthy eating and supplements has that under control. 

I think there are some positive steps you can take to improve your wellbeing. Obviously as a diagnosed celiac you should get back on the gluten free diet. You could also look at the foods you replaced the gluten with. 

But the main step I think you need to take isn't a lifestyle change as such.

49 minutes ago, Another PO'ed Celiac said:

Is there a possibility I was misdiagnosed even though my biopsy and blood work was positive for Celiac?

You have blood test, endoscopy and symptoms. You have celiac. The possibility you need to address is that you have not been able to process this diagnosis and are stuck at present in the denial phase of the grieving process I linked you to last time

I think you should get some help processing what's happened to you and how it will affect you in the future. Some counselling, or just a good friend to talk to. People here will help, just reread the last topic you started there was some good advice offered, but sometimes it helps to speak about these things to a person who is there and able to speak back. 

Best of luck!

Matt

 

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The part that I'm not understanding is that I had absolutely NO improvement in symptoms even after 6 months of NO gluten whatsoever.  In fact, my stomach problems (constipation etc) got worse!  POTS was realized only in the last 3 months.  I was actually reading that some lymphomas can cause false positive Celiac diagnosis and we have been suspecting that for the last month or so.  I'm really frustrated and am afraid that I could have a difficult to diagnose cancer that will not be found because everyone is just so sure that it's Celiac.  I went through the process and accepted that I had Celiac.  But things just don't seem to add up...if I had Celiac, wouldn't I be feeling pretty sick after going 7 months without gluten and then eating it again?  I honestly think it was the coffee that has me feeling better but if that is the case then eating gluten does nothing whatsoever to me, good or bad.  One of the things required for a firm Celiac diagnosis is improvement on a gluten free diet.  That didn't happen.  

I've just started seeing an immunologist so I guess we will have to see how things go.  But one thing that seems to have proven true with me is that my instincts are usually always right.  There's something going on, but I don't think it's Celiac.  I had a test some time ago (cannot recall when) but it was some kind of genetic gene test that is apparently associated with Celiac and it came out negative.  That's why they never thought to test me for Celiac for some time.  Maybe it was wrong or they didn't have the right technology at that time, I have no idea.  All I know is that it adds another piece to the puzzle and tells me that I really need to figure this nonsense out.  (And get some better doctors because I've been diagnosed with so many things and then undiagnosed it's getting completely ridiculous!)

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Jmg    195

No one here can or should tell you that you don't have lymphoma, but try to look at this as objectively as you can. Not easy when it's your own health I realise. 

Firstly, lack of response to gluten free diet does not equal exclusion of celiac. There is such a thing as refractory celiac, it's rare but it does exist. There are also large differentials in reaction to the gluten free diet. Some get immediate benefits, others it can take months or years. 

Second, if yr concern is that a lymphoma is causing a false positive on the celiac test the very last thing on earth you need to be eating is gluten. You need to be as strict as possible on the diet because an oncologist would need to eliminate gluten mediated effects when looking for lymphoma. So regardless of whether you have it or not, you shouldn't be eating gluten whilst that question exists. 

There are lots of factors that could be impacting on your response to the diet, including possible cross contamination, reaction to gluten free substitute foods, nutrient imbalance etc. Constipatiation could indicate a magnesium deficiency et. Etc. Are you keeping a food journal?  What supplements if any do you take? What steps did you take on going gluten free?  Are others in your household eating gluten?

Maybe if you share some of these details with the community here they will have some useful suggestions?

 

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I have my own mini fridge, microwave and toaster and I don't even go in the kitchen.  Everyone in the household is mostly gluten free (the kids have a couple things but that's why they have their own space for them).  No flour or anything that could possibly go airborne is allowed in the house.  We don't eat out because of cross contamination risk.  I even checked all the pets foods to see if any of them contained gluten because I didn't want to have to think about that risk.  I have powdered magnesium that I add to my huge water bottle and drink all day long.  I also drink zipfizz, which is the only place I could possibly be getting my vitamins from so how could I possibly have any malabsorption when my vitamin/mineral levels consistently test normal?  Unless gluten is coming in through the walls from outside, I don't see how it's possible there could be any cross contamination when I wasn't even eating anything that said it could have come into contact with 'machines that may also process gluten containing ingredients' etc.  I was super strict and wanted to avoid any possibility of accidental exposure because of the fear of permanent brain damage.  We got new pots and pans, and I even use paper plates and bowls and disposable silverware!  I rarely come out of my room, let alone going into stores and would never even go anywhere that had flour in the building for fear of breathing it or getting it on my skin.  My best friend was visiting from out of town last month and I even had to miss out on all the times they went out.  Which is really sad because I missed out on a lot of fun that I could really have used right now.  

Supplements have been an experiment but mostly it's just magnesium and probiotics right now and I've rotated everything to ensure none of those are causing any problems.  I had to change my magnesium a few times as they seemed to upset my system but the latest one I've been on for a few weeks seems to be fine as long as I don't take too much of it.  I systematically eliminated and rotated different foods to see if that made a difference but since I was hardly eating anything anyway, none of it made a difference and yes I was keeping a food diary.  Yogurt and most dairy caused me trouble unless I took lactaid so I eliminated it and switched to cashew milk which doesn't upset my stomach at all.  All the same foods still cause me trouble as did before, no change at all to most dense grains and foods and a lot of whole foods etc.  More than a couple bites of chicken or meats make me sick just the same.  The naturopath tried some enzymes including a Lipase one which only gave me some pretty bad heartburn (that I haven't had in several years) so I couldn't continue taking it. 

Like I said, I seem to be a medical mystery so I am looking for the RARE and UNUSUAL because that just seems to be ME.  They only took 1 biopsy from 1 place and the damage was mild in the presence of mild chronic gastritis which I believe was caused by dairy so I don't think I even trust the biopsy.  I'm not in denial, if I have Celiac, then fine, I have Celiac.  But I'm just not seeing the evidence to prove it and I'm not going to continue torturing myself when it makes absolutely no sense to me.  How can they tell me I have one autoimmune disease which I have no intestinal symptoms for when all my blood work for autoimmune disease comes back negative?  You see what I mean?  My daughter has the same ADD symptoms and such as me, but she doesn't have Celiac (we had the kids tested when I tested positive) so how can we say my symptoms ARE Celiac?  ADD and Autism run in my family and no one else is Celiac unless my dad is and does have DH but if he does then he has the dumbest dermatologist on the planet to not see it.

If I've got lymphoma by the way, that's it, game over.  I don't have enough fight in me to get through chemo or any more surgery or anything else.  You see where I'm going with this?  I'm not suicidal and I don't want to die because I've got awesome friends and family, but I've had it with all this health BS.  I NEED other possibilities, no matter how rare, that I can look into.  Nothing is making any sense right now but I did just recently do some genetic testing through 23andme and Genes for Good so I guess we will see what the raw data comes up with soon?  (Sorry, don't know how that posted before I was done with it.)

Edited by Another PO'ed Celiac
Post posted before I was done

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Jmg    195

That sounds comprehensive.

What food do you eat?

Do you keep a food journal? 

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What do I eat?  Nuts and cheese pretty much!  Mashed potatoes, limited cooked veggies (cooked to pretty much mush), a bite or two of meat here and there, gluten free cereal sometimes, maybe 3 or 4 grapes here and there, a banana here and there...I'm telling you, not much!  Sargento Balanced Breaks have been my mainstay for months.  Sometimes I get daring with them and I'll have some of the Sargento SWEET breaks if I'm feeling especially bold.  I drink more than I eat.  The small gastric sleeved stomach doesn't leave me all that hungry anyway.

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spdegro    0
1 hour ago, Another PO'ed Celiac said:

What do I eat?  Nuts and cheese pretty much!  Mashed potatoes, limited cooked veggies (cooked to pretty much mush), a bite or two of meat here and there, gluten free cereal sometimes, maybe 3 or 4 grapes here and there, a banana here and there...I'm telling you, not much!  Sargento Balanced Breaks have been my mainstay for months.  Sometimes I get daring with them and I'll have some of the Sargento SWEET breaks if I'm feeling especially bold.  I drink more than I eat.  The small gastric sleeved stomach doesn't leave me all that hungry anyway.

It took me a few years to feel better after getting a diagnosis at 50 yo. I still don't feel 100%, 10 years later, but I know I need to drink more water and eat a much more plant based diet. Have eliminated sugar recently, except I still crave a little granola...so I know there is sugar addiction going on! Why eliminate coffee? Its good for you. Thank you for posting. Your experience helps us all. I relate to the frustration and denial. I am sad you 'rarely come out of your room', what is up with that? do you have other health issues?

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Victoria1234    52
2 hours ago, Another PO'ed Celiac said:

What do I eat?  Nuts and cheese pretty much!  Mashed potatoes, limited cooked veggies (cooked to pretty much mush), a bite or two of meat here and there, gluten free cereal sometimes, maybe 3 or 4 grapes here and there, a banana here and there...I'm telling you, not much!  Sargento Balanced Breaks have been my mainstay for months.  Sometimes I get daring with them and I'll have some of the Sargento SWEET breaks if I'm feeling especially bold.  I drink more than I eat.  The small gastric sleeved stomach doesn't leave me all that hungry anyway.

That's a whole new avenue there with the bariatric (sp?) surgery aspect. I've had 2 friends have the surgery and both have had had rotten issues afterwards. Both had to quit their jobs due to unexplained illnesses and symptoms. Both are horribly constipated , even with fancy new meds. And neither can find any food combinations that seem to make them feel better. 

Just wondering if this could be a factor in how you are feeling?

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tessa25    26

One way to verify to yourself that you do indeed have celiac and gluten free works is to get the celiac blood tests now, go gluten free, then get those same tests 3 months from now, then 6 months from now. If your numbers decrease then you know you're doing the right thing as far as the celiac goes.

I had to just have mashed potato soup and ice cream for the past two years to get my numbers to go down. My symptom, slight nausea all the time, didn't change at all until 1 year. I've added in eggs and tater tots as of July. My numbers will be bad this month because I pigged out at a dedicated gluten free bakery a couple of times (nausea). Now I'm adding in cheeseburger, no bun, w/ zucchini cooked in olive oil (no nausea). Will stick with soup, eggs, cheeseburger w/ zucchini for this month and see if my numbers start going down again. By the way, my nutrient levels are perfect across the board. Everybody heals differently and on different foods. Most avoid dairy, but it allowed my numbers to go down when meat and eggs didn't.

Don't know why you avoided coffee when it's gluten free and you feel better drinking it. I don't drink the stuff, but I get that most of the world is addicted to it. :P

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kareng    1,975
2 hours ago, Another PO'ed Celiac said:

What do I eat?  Nuts and cheese pretty much!  Mashed potatoes, limited cooked veggies (cooked to pretty much mush), a bite or two of meat here and there, gluten free cereal sometimes, maybe 3 or 4 grapes here and there, a banana here and there...I'm telling you, not much!  Sargento Balanced Breaks have been my mainstay for months.  Sometimes I get daring with them and I'll have some of the Sargento SWEET breaks if I'm feeling especially bold.  I drink more than I eat.  The small gastric sleeved stomach doesn't leave me all that hungry anyway.

I am not sure why you think a Celiac cannot have coffee? They can. 

And i agree, maybe there are some issues with your gastric sleeve?  I think I have read that Sometimes those are not a good idea with Celiac.

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Victoria1234    52
39 minutes ago, kareng said:

I am not sure why you think a Celiac cannot have coffee? They can. 

And i agree, maybe there are some issues with your gastric sleeve?  I think I have read that Sometimes those are not a good idea with Celiac.

Seriously if it wasn't for coffee, I'd never go to the bathroom. 

Theres a whole big long crazy coffee thread started by AristotlesCat in case you want to read about it. Just do a search for him, it was his last post I think.

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RMJ    55

Have you had your antibody levels rechecked?  If they've gone down maybe something else is causing your problems,

 

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Sorry, coffee was one of the things that was suggested I eliminate because of the amount of milk I used to add to it and the caffeine causing problems since I take a stimulant for my sleep problems (narcolepsy/hypersomnia) and ADD.  So I did to see if it would make a difference but now that I see it didn't, it's likely going to come back at least a couple times a week.  Yeah the gastric sleeve definitely causes me a lot of the problems and it's the constant pain I'm in which is what causes me to live in my room.  We've been trying to figure it out for some time now.  My scans show minor problems and some osteoarthritis but it's only very recently that the suspicion for Ehlers Danlos came up.  

I was super tired and frustrated when posting last night so I probably wasn't making a lot of sense.  It's been infuriating because every single doctor I see takes something else away from me.  Don't eat this, don't do that, you shouldn't have pets, etc etc etc.  I've just had it and have been pushed so far beyond my breaking point that I have no idea how I'm not locked up in a rubber room.  So now I'm fighting back.  If things are going to be taken away from me, I'm demanding to know why and want to see the PROOF!  Cuz my quality of life... it's not really life at all.

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Victoria1234    52
5 minutes ago, Another PO'ed Celiac said:

Sorry, coffee was one of the things that was suggested I eliminate because of the amount of milk I used to add to it and the caffeine causing problems since I take a stimulant for my sleep problems (narcolepsy/hypersomnia) and ADD.  So I did to see if it would make a difference but now that I see it didn't, it's likely going to come back at least a couple times a week.  Yeah the gastric sleeve definitely causes me a lot of the problems and it's the constant pain I'm in which is what causes me to live in my room.  We've been trying to figure it out for some time now.  My scans show minor problems and some osteoarthritis but it's only very recently that the suspicion for Ehlers Danlos came up.  

I was super tired and frustrated when posting last night so I probably wasn't making a lot of sense.  It's been infuriating because every single doctor I see takes something else away from me.  Don't eat this, don't do that, you shouldn't have pets, etc etc etc.  I've just had it and have been pushed so far beyond my breaking point that I have no idea how I'm not locked up in a rubber room.  So now I'm fighting back.  If things are going to be taken away from me, I'm demanding to know why and want to see the PROOF!  Cuz my quality of life... it's not really life at all.

Did you go gluten-free before or after the gastric band surgery? I ask as the friends I have both have terrible abdominal pain, like they are tied up in knots inside, so I'm wondering about the timing.

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Ennis_TX    241
15 hours ago, Another PO'ed Celiac said:

I have my own mini fridge, microwave and toaster and I don't even go in the kitchen.  Everyone in the household is mostly gluten free (the kids have a couple things but that's why they have their own space for them).  No flour or anything that could possibly go airborne is allowed in the house.  We don't eat out because of cross contamination risk.  I even checked all the pets foods to see if any of them contained gluten because I didn't want to have to think about that risk.  I have powdered magnesium that I add to my huge water bottle and drink all day long.  I also drink zipfizz, which is the only place I could possibly be getting my vitamins from so how could I possibly have any malabsorption when my vitamin/mineral levels consistently test normal?  Unless gluten is coming in through the walls from outside, I don't see how it's possible there could be any cross contamination when I wasn't even eating anything that said it could have come into contact with 'machines that may also process gluten containing ingredients' etc.  I was super strict and wanted to avoid any possibility of accidental exposure because of the fear of permanent brain damage.  We got new pots and pans, and I even use paper plates and bowls and disposable silverware!  I rarely come out of my room, let alone going into stores and would never even go anywhere that had flour in the building for fear of breathing it or getting it on my skin.  My best friend was visiting from out of town last month and I even had to miss out on all the times they went out.  Which is really sad because I missed out on a lot of fun that I could really have used right now.  

Supplements have been an experiment but mostly it's just magnesium and probiotics right now and I've rotated everything to ensure none of those are causing any problems.  I had to change my magnesium a few times as they seemed to upset my system but the latest one I've been on for a few weeks seems to be fine as long as I don't take too much of it.  I systematically eliminated and rotated different foods to see if that made a difference but since I was hardly eating anything anyway, none of it made a difference and yes I was keeping a food diary.  Yogurt and most dairy caused me trouble unless I took lactaid so I eliminated it and switched to cashew milk which doesn't upset my stomach at all.  All the same foods still cause me trouble as did before, no change at all to most dense grains and foods and a lot of whole foods etc.  More than a couple bites of chicken or meats make me sick just the same.  The naturopath tried some enzymes including a Lipase one which only gave me some pretty bad heartburn (that I haven't had in several years) so I couldn't continue taking it. 

Like I said, I seem to be a medical mystery so I am looking for the RARE and UNUSUAL because that just seems to be ME.  They only took 1 biopsy from 1 place and the damage was mild in the presence of mild chronic gastritis which I believe was caused by dairy so I don't think I even trust the biopsy.  I'm not in denial, if I have Celiac, then fine, I have Celiac.  But I'm just not seeing the evidence to prove it and I'm not going to continue torturing myself when it makes absolutely no sense to me.  How can they tell me I have one autoimmune disease which I have no intestinal symptoms for when all my blood work for autoimmune disease comes back negative?  You see what I mean?  My daughter has the same ADD symptoms and such as me, but she doesn't have Celiac (we had the kids tested when I tested positive) so how can we say my symptoms ARE Celiac?  ADD and Autism run in my family and no one else is Celiac unless my dad is and does have DH but if he does then he has the dumbest dermatologist on the planet to not see it.

If I've got lymphoma by the way, that's it, game over.  I don't have enough fight in me to get through chemo or any more surgery or anything else.  You see where I'm going with this?  I'm not suicidal and I don't want to die because I've got awesome friends and family, but I've had it with all this health BS.  I NEED other possibilities, no matter how rare, that I can look into.  Nothing is making any sense right now but I did just recently do some genetic testing through 23andme and Genes for Good so I guess we will see what the raw data comes up with soon?  (Sorry, don't know how that posted before I was done with it.)

...Diet wise, celiac, autism, add...feel a odd kin thing going on....anyway odd thought. I noticed really high levels of carbs an sweets in your diet. You mentioned constipation despite magnesium also I want to address these two points. First there is another AI issue Ulcerative Colitis and a few others that react with inflammation to glucose, fructose, carbs and a few other foods. These cause all kinds of issues, cramping and utter crap, plus if you have candida...you supposed to starve it and remove all sugars and carbs. I have a candida overgrowth in my large intestine I am dealing with now from using antibiotics for over 7 months -_-.   Other point Magnesium. what form are you taking? If you have major constipation I suggest Magnesium Citratre like Natural Vitality Calm...and if you have major issues you might have to go WAY over the suggested dosing I take 2-3 times the suggested dose spread out the day, due to my body needing much more for various reasons. You can tell your dosing right when your start getting looser stool at which point your dial it back just a tad.    

Also on supplements look at Liquid Health. godly life saver. I take Stress & Energy and Neurological Support 1 tbsp each 3 times a day being liquid form it is easy to asorb and you just drink it no pills.

I think another HUGE issue is you might not be getting enough fats. I FEEL wonderful on a low carb high fat diet. Not much else to loose might try it for a bit with ketogenic/paleo diet removing all grains, fruits, dairy. >.< I live on dairy free cheese sauces, nut milks, nut butters (I make my own almond butter artisan blends sugar free but taste like deserts), nut based baked goods.....every meal has sugar free almond and coconut muffins for desert. omelettes galore, stir fry, and I love making diary free, sugar free icecream with protein powders in it, topping it with coco nibs.....and coco nibs are godly great at helping getting good saturated fats into the diet....and really improve my mental state. So do the seeds hemp, and pumpkin.

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Jmg    195

Ok so thanks for providing more detail :) I think a timeline would be helpful per Victoria's point above, if you can put rough dates on symptoms and changes, including the celiac diagnosis, going gluten free, gastric band etc?

Your diet sounds pretty restricted, I understand your frustration :( It did however make me think of one approach from a leading celiac doctor:

This has helped non responsive celiac patients before and is based on peer reviewed science. So you would at least have some proof before embarking on a restrictive diet.

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13 hours ago, Victoria1234 said:

Did you go gluten-free before or after the gastric band surgery? I ask as the friends I have both have terrible abdominal pain, like they are tied up in knots inside, so I'm wondering about the timing.

After...The sleeve was over 4 years ago, the Celiac last December just before Christmas.  Before going gluten free, I had no stomach issues at all, just a large ovarian cyst that was sitting on my bowel causing pain with movements, which is why they talked me into doing the stupid scopes that I did NOT want to do.  Once it ruptured (which was a whole traumatic 10 page story in itself) and the pain from that went away, the bowel pressure/pain was gone.  (Well, no stomach issues other than the ones the sleeve caused with certain foods.  That has pretty much been the same since I had it done.)  

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2 hours ago, Jmg said:

Ok so thanks for providing more detail :) I think a timeline would be helpful per Victoria's point above, if you can put rough dates on symptoms and changes, including the celiac diagnosis, going gluten free, gastric band etc?

Your diet sounds pretty restricted, I understand your frustration :( It did however make me think of one approach from a leading celiac doctor:

This has helped non responsive celiac patients before and is based on peer reviewed science. So you would at least have some proof before embarking on a restrictive diet.

"Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade."

Ok again..I cannot eat most of what is on that list!  How would I survive 6 months on that?  And what do you mean by non-responsive?  I have no intestinal problems with gluten.

Before my gastric sleeve the only foods I had trouble with were fructose in juices and aspartame.  No allergies that I knew of, have never had an anaphylactic reaction to anything and nothing ever seemed to upset my stomach.  No matter what I ate or how little or how much, the only time my weight ever budged (always going up) was at times of increased hormones (birth control pills, pregnancy etc...even gained weight while breastfeeding which baffled doctors) or when put on certain medications, especially prednisone (I won't go near a steroid of any kind ever again).  I could eat nothing but salads and not lose a pound...or bags of candy and not gain a pound.  Really bizarre.  But I was 300 lbs with diabetes and so much pain I could barely move so out of desperation, when my health insurance denied coverage for weight loss surgery, I had it done in Mexico.  I lost weight agonizingly slowly even though I was eating the way I was instructed to and it wasn't until I was put on stimulants for my severe ADD and Narcolepsy/Hypersomnia that I really finally began to lose weight and feel better.  Tests weren't clear as to which sleep disorder I have other than Sleep Apnea due to the medication I was on.  But I couldn't stay awake and would fall asleep instantly throughout the day and could sleep 14, 15, 16 hours or more and barely get out of bed, almost feeling drunk, even though I faithfully used my cpap machine.  Didn't matter what I was doing, I would feel almost like a veil drop down over me and I'd be sound asleep in seconds.  

I started losing weight and felt better than I ever had til I went on a hike and ended up with an avulsion fracture, had my periods return with extreme bleeding and pain ending with a hysterectomy, fell off the counter, got rearended, fell off a ladder and went through a bunch of stress over a complex ovarian cyst that ended up rupturing before I could get in for surgery landing me in the ER where I was misdiagnosed as being constipated...seriously...not even joking (we are still considering a lawsuit on that one).  I was pressured by my doctors to still go through with the stupid scopes which I did not want to do but did it any way to shut them up and prove that the pain I was in was related to the cyst and not GI.  The only thing they found was mild gastritis (likely related to the gastric sleeve), and the biopsy was Marsh 3A so they sent me for blood work and diagnosed Celiac and sent me on my way saying avoid gluten and see a nutritionist. I was still having some minor pain which was diagnosed as a suture granuloma from my hysterectomy so I had surgery once again early this year to remove it and repair some damage.  Meanwhile as you can imagine with all this going on, I began doing less and less and experiencing more and more pain.  Besides going through the pain of being rear-ended where my head was snapped in such a way that not only did I get whiplash but I managed to bruise the back of my head smacking it on the head rest, the falls and other injuries as well as the years spent being so overweight mean pain in my low back, buttock/upper thighs, hips and SI joints.  I've done physical therapy, chiro, etc etc all the things you do and all the tests.    

Then for some unknown reason my left eye has gotten super blurry and there are blood vessels growing into my cornea and the specialist has no idea why and has never seen this thing which is affecting the center of the cornea rather than front or back of it.  I basically see as if I have a bad cataract and the only treatment is a corneal transplant which I don't see the point in doing until we know what caused it because seriously...they leave stitches in your eye for a year (??!!) and you have to be on steroid eye drops and there is just no way I'm going through all that to have it happen again!  The healthier I try to get, the worse I seem to feel and now I spend most of my time in my room because our bed is the absolute softest we could find and the only surface I can sit on because of the butt pain from bursitis or my tailbone or whatever hurting.  Meanwhile I've been forced to eliminate most foods from my diet and  passed around from specialist to specialist because no one seems to know what is going on with me with all this pain that isn't seeming to get better with any of the treatments.  I research things and try to find different kinds of supplements and have tried this and that and that with this or without that etc etc etc.  A naturopath did discover I have Candida so I was on fluconazole for over a month and we are hoping it's gone but she has referred me to someone else now who was out of office for 3 weeks and can't get me in until the end of the month. 

So there you have it... that's what brought me here because my health sucks beyond belief, but I have an amazing husband, family and friends who are trying to help me through it as well as an outlet in a new love of art.  I've lost 140 lbs but still am about 30-40 or so overweight but I'm ok with that.  I'd like to lose the rest but right now I'm focused on trying not to feel like death.  I'm tired and in pain all the time and wondering why I'm torturing myself on a diet that obviously is doing nothing for me.

So I gave up...I don't even care anymore.  This whole thing is just beyond ridiculous.  What's the point of having a life if it's full of misery anyway?  I'm going to enjoy what I can of it, any way I can because it's all I can do!

Make a little more sense now why I'm so fed up?

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Ennis_TX    241
1 hour ago, Another PO'ed Celiac said:

But I couldn't stay awake and would fall asleep instantly throughout the day and could sleep 14, 15, 16 hours or more and barely get out of bed, almost feeling drunk, even though I faithfully used my cpap machine.  Didn't matter what I was doing, I would feel almost like a veil drop down over me and I'd be sound asleep in seconds.  

This is Celiac, your body has your antibodies up fighting the gluten in addition to neurological effects on the brain, compounded by malabsorption of b-vitamins, magnesium, etc. will cause this effect. Yeah I had the same thing from Jr. High through college before DIA. PS  I had to be gluten free, and on insane amounts of supplements for about 2 years before I got my energy back, also back then I was over 200lbs...all jiggle and and I could fall asleep at the wheel if not trying to hardcore pump myself with heavy metal and head bang while chugging energy drinks. Someone else did a post on something likes this, relations between a form of Narcolepsy and and gluten exposure with Celiacs.

 

1 hour ago, Another PO'ed Celiac said:

Then for some unknown reason my left eye has gotten super blurry and there are blood vessels growing into my cornea and the specialist has no idea why and has never seen this thing which is affecting the center of the cornea rather than front or back of it.  

As Celiac is a AI issue it can cause the body to do crazy things in other parts trying to fix damage while constantly attacking itself, I think I recall seeing one other post about someone having it effect the eyes likes this, several others have issues with gluten exposure causing nightblindess, loss of vision, eye ticks, blurred or altered vision.

 

1 hour ago, Another PO'ed Celiac said:

A naturopath did discover I have Candida

Candida THRIVES on sugars and carbs, EVEN with medications it will not go away unless you STARVE it also. This is a combination effects, there is a food list for this, basically eat protein, fats, and low carb veggies, NO FRUIT, SUGAR, JUICE, GRAINS, Your just feeding it, it will also cause gas, bloat, fatigue, pain, AND other food intolerance.  https://cdn2.hubspot.net/hub/141325/file-699888490-pdf/resources/4410.pdf?t=1500222548201&utm_source=hs_automation&utm_medium=email&utm_content=19676586&_hsenc=p2ANqtz-8jxnbwJjfVFAAzkynlMKbvsfHy08TrDO3pz7gi_VbE68ihHTpZ4GVmce6H9a1dpbXqT9iROM1TGgMJqGONdVlP_B9xkL0Ju2JTCzaujV_XLIUYZ_c&_hsmi=19676586

1 hour ago, Another PO'ed Celiac said:

 I'm tired and in pain all the time and wondering why I'm torturing myself on a diet that obviously is doing nothing for me.

So I gave up...I don't even care anymore.  This whole thing is just beyond ridiculous.  What's the point of having a life if it's full of misery anyway?  I'm going to enjoy what I can of it, any way I can because it's all I can do!

OH this sound great I know I considered, I have a bucket list of foods to eat if I end up in the hospital told I was going to die in 2-3 days.....til then I will not touch gluten. Why? Did you know the more you eat the more damage it does? OH HERE is the fun part, if it damages your more, and more,....you WILL develop more FOOD ISSUES, like your body will develop a intolerance to another food and IT WILL start making you vomit, and causing pain.....and most commonly these are your staples and things you eat most as your body starts getting confused more and more......yeah I developed a CORN  allergy....I grew up in a bloody half Hispanic household that was the primary staple on half the family. WISH i had stopped earlier I can never have my mothers or my grandmas tamales, or enchiladas again (do you know how much I wanted to eat those last ones she had in her freezer after she passed away, her last homemade batch) OH we had another member who kept on eating gluten, it somehow caused their intestines to rupture and they had to have an emergency surgery done then had to use use one of those s$#& bags from then on I am sure someone will link the story for you.

Do not think death by this is a easy way out either, consider your family. I considered death and suicide in the past, but I am a bit overly logical. In planning it out I kept running into the issues of the burden on my family, cost of the funeral, etc. Not something I wish to leave behind, on as side note I did write out my will and testament saying I wanted a banquet at my funeral grave side, I said I wanted to be buried with a bunch of gluten foods I could not eat while alive, dressed up in costume as my favorite anime character....with some odd specifics like a Monte Cristo sandwich in my mouth, a deep dish Chicago pizza from zinis in place of a wreath on the coffin. >.<  In the end I figured I would struggle to live and have so far come out on top for the most part. I post monthly updates....life keeps liking to pull that stool I climb on out from under me, but I keep trying.

GOD I wish you lived closer, I do chef work for people on special diets, like I could make you some nice comfort foods that are diet compliant and teach you some fun recipes. Heck I dream of opening a grain free gluten free food truck one of these days to help people out.  Check the recipe section, I got a GODLY Vegan, dairy free, and grain free, cheesy garlic bread roll recipe and cheddar biscuit recipes...they are better then gluten versions....as they reheat even better then fresh as the vegan cheese is IN THE DOUGH, I also have a nice very simple gluten free flat bread recipe on the recipe section....mix herbs in it for all kinds of fun, I made some earlier this week then put vegan cheese on it and melted it on top in the broiler then we dipped it in sauces at a luncheon I did for a business.

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cyclinglady    690

Celiac disease is like a chameleon -- always changing.  My celiac disease symptoms are rarely the same each time I have been glutened.  I suspect, like most of us, that I suffered from celiac disease my whole life.  I had symptoms that waxed and waned over the years.  When I was actually diagnosed, I had no GI issues, just anemia (had that my entire life too) and undiagnosed osteoporosis.   My theory is that after consuming gluten this past week, you are doing damage.  

You have been diagnosed (blood tests and biopsy) with celiac disease.  There is no denying that diagnosis.  It is as firm as it can get.  Want to see if you are improving?  Ask for follow-up celiac antibodies testing.  This can help determine if gluten is sneaking into your diet. It can help rule out celiac disease as the source of your current issues.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Seven months is still a short amount of time when it comes to healing.  I suspect, like many of us, you have been making mistakes.  For example, I would never purchase those cheese and nut kits.  They are processed.  There is still a risk of contamination.  You said that you have been living off them.  They are not certified gluten free.  Mistakes are made every single day by manufacturers (just sign up for FDA and USDA recalls and warnings).  It one of the foods that you listed that jumped out at me.  Not saying this contains gluten, but it is a possibility.    Eat plain cheese you cut yourself.  Eat nuts that have been certified (at least for now) or ones you crack open yourself.  Moderation is key.  Nuts can be hard to digest and you might have a slight intolerance to lactose.  

The gluten-free diet suggested basically cuts out all foods that are processed.  Why?  Because they is always a risk of contamination when a food is processed.  Granted that risk could be very small, but there is still a risk!  Why bother?   Read up on non-response or refractory celiac disease.  Every celiac should be aware of this rare, but possible complication.  

I know we say on this forum to just read the ingredients, but many of us find that even trace amounts just might be too much.  There is no "one size fits all" when it comes to a gluten free diet designed to help heal a celiac.  

Your gastric sleeve might also be a contributing factor as others have pointed out, not to mention all your other health issues.   And autoimmune testing?  There are no perfect tests or results.  No wonder so many doctors and their patients have a hard time identifying an AI issue.  Heck, my test results are not common for celiac disease.  Drives me nuts and my GI has no explanation.  It is what it is.  

I hope this helps! 

 

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Ennis_TX    241
On 8/12/2017 at 5:30 AM, Another PO'ed Celiac said:

What do I eat?  Nuts and cheese pretty much!  Mashed potatoes, limited cooked veggies (cooked to pretty much mush), a bite or two of meat here and there, gluten free cereal sometimes, maybe 3 or 4 grapes here and there, a banana here and there...I'm telling you, not much!  Sargento Balanced Breaks have been my mainstay for months.  Sometimes I get daring with them and I'll have some of the Sargento SWEET breaks if I'm feeling especially bold.  I drink more than I eat.  The small gastric sleeved stomach doesn't leave me all that hungry anyway.

OHH you have been eating gluten this entire time.......this is from the Sargento Website

" The Sargento Sweet Balanced Breaks® variety that includes graham crackers contains wheat.  All Balanced Breaks varieties are packaged in the same manufacturing plant, so all Balanced Breaks packages include a statement that they’re made in a facility that also processes wheat. "

PS Cheese and dairy are a NO starting off on a gluten free diet ESPECIALLY with gut damage, The villi tips produce the enzyme that breaks down diary. IE your going to get digestion issues with dairy. ALSO in some diary is known to cause joint issues.

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Victoria1234    52
4 hours ago, Ennis_TX said:

did write out my will and testament saying I wanted a banquet at my funeral grave side, I said I wanted to be buried with a bunch of gluten foods I could not eat while alive, dressed up in costume as my favorite anime character....with some odd specifics like a Monte Cristo sandwich in my mouth, a deep dish Chicago pizza from zinis in place of a wreath on the coffin. >.<  In the end I figured I would struggle to live and have so far come out on top for the most part. I post monthly updates....life keeps liking to pull that stool I climb on out from under me, but I keep trying.

Crying.....

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tessa25    26
2 hours ago, Ennis_TX said:

PS Cheese and dairy are a NO starting off on a gluten free diet ESPECIALLY with gut damage, The villi tips produce the enzyme that breaks down diary. IE your going to get digestion issues with dairy. ALSO in some diary is known to cause joint issues.

Cheese and dairy are only to be avoided if they are problematic. My numbers go down when I have cheese and ice dream.

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Victoria1234    52
16 minutes ago, tessa25 said:

Cheese and dairy are only to be avoided if they are problematic. My numbers go down when I have cheese and ice dream.

But she is having problems.... we are trying to give ideas on things to look at more closely.

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    • Yeah sounds about normal for a line up of symptoms, You have to keep eating the gluten for the blood testing for 12 weeks prior and 2 weeks for hte following endoscope and biopsy. You can cut down to only eating 1/2 slice of bread a day or a few handfuls of wheat thins. Many of us have issues with nutrient absorption and common problem foods due to damaged intestines. Magnesium it is different from person to person what form works best but either Natural Vitality Calm (can irritate the gut, it needs to be started at 1/4 tsp 2x daily and slowly raised to the full dose over week or 2) if this is too irritable I suggest Doctors Best Magnesium both are powdered and can be blended with a drink. B-vitamins I suggest a blend like Liquid Health Stress & Energy in combination with Liquid Health Nurolgoical Support 1tbsp each 3 times a day, again this is blended with a drink, is liquid form making it easy for your body to absorb. Vitamin D is also available from Liquid Health be careful with dosing on this as too much can trigger vomiting and it stays in your body so not everyone needs it daily. Painful hours with more gluten yeah. slight residue make me sick, numbness in my extremity, brain fog, bit of Mr Hyde mood swings and alternating D and C. Full on gluten....happened in June of 2016 when I last ate out.....I lost motor control (I have gluten ataxia in addition), and was on the floor in extreme pain vomiting violently for hours so hard I was puking blood. I had a friend who thought I had died kept checking my pulse my heart rate monitor averaged my BPM in the 30s for this, and I turned completely white. Later that night I was able to make it the toilet for the back half of the purge and the rest of the week was fogged blur...... Other foods to avoid, dairy as the enzymes to break it down are produced by the tips of the villi which are damaged first by this disease. Oats are a common cross contaminated foods and some celiacs react to them regardless of gluten in them the same way so we suggest removing these foods from your diet for a while til you heal a bit then trying them again if you wish. Please look at the following information links as your new to this BUT STAY ON gluten til your testing is done, if you test negative then you might still have NCGI and might want to try gluten free anyway. SO you can start cleaning out and getting ready if you wish for the change over. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/
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