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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 Celiac.com's FREE weekly eNewsletter   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
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AAtroposP71

6 Month update - Still broken

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So, it's been 6 months gluten free, grain free, dairy free... Pretty much everything free, and progress has been pretty minimal. I will say that I definitely feel better than I did when I started, but I'm still nearly completely non-functional. I still feel like I'm not in reality, still can't focus, still pretty dizzy, panic attacks, exhausted, crippling lethargy, muscle twitches, you name it.

As I've said before, I've got all my bases covered on CC, have my own pans, etc. Sometimes I do feel like I'm getting better, but then for little to no reason, such as mis-timing a meal, or waking up or going to bed an hour early or late, my body throws a tantrum and everything comes flooding back.

The past couple weeks I've been trying a low carb, high fat "keto" diet, which seemed to be working after some of the induction stuff passed, but the other day I had to get up early, and since then I've been disoriented, derealized, and exhausted. It's impossible for me, or anyone, to be as consistent as my idiot body demands.

I've had my vitamin/mineral levels checked, and thyroid checked, all coming back normal.

I had an endoscopy done at the beginning of September, and the biopsy came back negative for celiac. All they found was some irritation in my stomach and slapped GERD on me. That said, the same thing happened to my aunt, who is celiac. I don't know how she eventually found out, but if it means doing a gluten challenge, I don't need an official diagnosis from some whitecoat moron. I'm out. I also don't know how many samples they took in my small intestine. From what I can gather, they only took one in there. Unsurprising, as I had a bad reaction to the anesthetic AND the oxygen, and when I called him asking about it he basically told me I was a crazy person. Another awful doctor experience.

Anyway, ranting aside, I feel like I've tried nearly everything at this point. The only other thing I can think of to try is to select a red crystal and kneel down by a specific wall and wait for a magical tornado to come take me to the next chapter in my life.

Who else here saw little progress in 6 months, and what the hell did you eventually do to fix things? I'm open to any and all suggestions besides 50 caliber aspirin, which is an option, but I'd rather not go that route.

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Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation.

Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.

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6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. -_- Always have to have hot fluids or this happens also.....no more cold drinks lol.

EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. -_- heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.

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At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.

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Thanks for all the input guys.

Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water.

For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since.

So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting.

The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?

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1 hour ago, AAtroposP71 said:

Thanks for all the input guys.

Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water.

For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since.

So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting.

The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?

There is a HUGE difference between grass and grain fed meats. The grass fed longhorn that I use when I Cook for others is 100% different then any other grain fed beef I have gotten in the store. THe stuff is SOO lean you have to ADD oil to the hamburger sometimes because it is so lean there is no oil to fry it up in. The meat is leaner then turkey. The omegas content is different in it also. I love cooking with it because it rarely needs any seasoning and anything I do apply seems to just explode in flavor with it. NOW I can not really eat it, but as a chef what we do is set a bit aside in a tasting dish and go do a chew and spit it out test. Not something to be done with a allergen or gluten but with stuff I do not digest like rice, beans, meats it is a means for me to know if seasoned and cooked right. >.< Note I lack the digestive abilities to break down actual meats, even with enzymes they just sorta float til I puke them up or they come out undigested out the back in the case with fish and crab. I have not tried meat since March....side thought my doctor had told me when my UC damage heals up I might be able to eat meat again....might try some fish tomorrow.

I do have some other thoughts, you say B12...what about the other B-vitamins? How much magnesium are you taking? Magnesium is a relaxent when your getting enough your feel relaxed, you have very vivid dreams and sleep like a rock. This is why many people take it right before bed.

I have always praised and sworn by Liquid Health Stress & Energy and Liquid Health Neurological Support for B-vitmains due to the nature of how they work with the body I take 1tbsp each 3 times a day before each meal to keep optimal levels and prevent that wane feeling. I also use KAL nutritional yeast in my meals often (look up the nutritional label on these)

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You might have to try cooking ALL fruits & veggies to death to make it super easy for your gut to handle them without putting undue stress on your body. Another thought is ditch every single processed food. Eat everything fresh that you cook yourself. No frozen foods, no canned foods. You can do dried beans but be sure to sort & wash them carefully first. 

6 months in is early for many people. It sounds like you're one of those people. Saying that you definitely feel better than when you started is a good thing. You know it's working. It just isn't working as fast as you hoped/wanted. Take heart that you are feeling better and try to be patient. I know it's hard. You want to GOOOOOOOOOOOOOOO & get on with your life. You feel like you're sitting at the starting line with your engine revving & you just want to race ahead but you can't get off the starting line, as if someone put a chain around your rear axle. 

Be kind to yourself, be patient with yourself. 

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Quote

I do have some other thoughts, you say B12...what about the other B-vitamins? How much magnesium are you taking? Magnesium is a relaxent when your getting enough your feel relaxed, you have very vivid dreams and sleep like a rock. This is why many people take it right before bed.

Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff.

Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's.

Hope you'll be able to eat meat again soon, even if in small amounts.

Quote

You want to GOOOOOOOOOOOOOOO & get on with your life. You feel like you're sitting at the starting line with your engine revving & you just want to race ahead but you can't get off the starting line, as if someone put a chain around your rear axle.

So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient.

Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips.

I'll tweak a few things here and there and keep trying.

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32 minutes ago, AAtroposP71 said:

Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's.

Coconut, almond butter, and cocoa nib fat bombs...I use plant fats to do it. You can make some great snacks out of fresh almond butter, shredded or coconut flour, and cocoa nibs. Sweeten with stevia for little dough like balls of goodness. Oh you miss potato chips, two options here I like to make my own protein chips with pea protein, or I can have 2-4 protes chips (vegan pea protein  chips made by a company) but they have to be eaten in moderation. Coconut chips....yeah I get Lets' Do Organic ones I can snack on a hand full of them or throw a handful of cocoa nibs in my mouth for snacks. If you like meat, try making jerky. get a dehydrator season your own and just do it.....lucky you can eat meat. I miss making roast in a crock pot....I used to make some of the best shredded meats. My old smoker.....I could make some of the best ribs and roast EVER. The jerky can be made and taken for snacks on the road or while out, crack open a can of spinach (canned unsalted delmonte does not bother me) or pack some stewed greens and have some jerky tear it up stir it in canned keto on the go. Other lovely thing are tuna and salmon if the canned bother you I often find them too salty to enjoy I have taken some and smoked it or dipped it in liquid smoke then cooked in a baking dish then loaded in to the dehydrator. I find doing this I can have that little bit of fish when I want without worry of spoilage (sucking on it and chewing it for a long time make it really satisfying for me) ....SOO doing this next week to try the fish again. Speaking of fish...since I perfected keto bread in my bakery this month......I think I might try making a tuna sandwich with avacado mayo....not had a tuna sandwich in over 5 years.....

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You'll get to the point where you can eat other things, you just have to give it time. Can you do eggs? Hard boiled eggs. They make fast snacks and are highly portable. If you make nut butters, you can just eat it by the spoonful. 

I don't like "normal" coconut macaroons, too wet for me, ick! I found this recipe though which drives me insane --- sooooooo good I about swallow my tongue.

http://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139

Don't know if you like them or not but re-fried beans. I NEED my carbs!!!!! If I don't get carbs, I will get weak & shaking 30 minutes after eating. I can't eat every 30 minutes!!! So I eat a lot of re-fried beans. I make a big vat & then portion into containers & freeze. If you have or get a stick blender, it will make super fast work of mashing those beans up. Only takes 2 minutes or less. I use olive oil in mine & lots of it -- need that fat. 

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Hi, AA.  Just wanted to say, I commiserate, as someone whose body seems to attack me out of the blue and leave me reeling. 

You, like me, are most probably  tired of trying to read piles of material in order  to glean a solution for yourself from books. 

However,  nevertheless a book that is worth a look-see is named:  HOSHIMOTO'S THYROIDITIS -Lifestyle Interventions for Finding and Treating the Root Cause,  by Izabella Wentz (a Pharmacist who set out to heal herself when she got little relief from mainstream doctors'  treatments. 

Good information on Celiac Disease.    (Author explains how some people have both Hoshimoto's Thyroiditis, along with Celiac Disease - even if the doctor's labs show normal numbers for the thyroid.)

  

Personally,  the main things that work for me with the thyroiditis, is sticking to a Paleo, glutenfree diet , eating wild-caught cod, and shrimp a few times a week.  Staying away from soy, even as a preservative in vitamins; and trying to get regular sleep using melatonin and chamomile tea when sleep doesn't come.   Also, taking a d-3 supplement, as its impossible to get it from the sun this time of year (definitely another energy robbing piece of the puzzle).   Supposedly, most with low-thyroids also run low on selenium, minerals, B-12 and iron.

The most frustrating thing is that the related food allergies can be different for everyone.   I also  stay away from fluoride as much as possible, as fluoride is a culprit that takes up the thyroid receptors of the body, as they have a similar chemical makeup.  Without the thyroid hormone the body's normal creation of enzymes for digestion further reduce our nutrition absorption, while also preventing the conversion of t-3's to t-4's to energy.   Lot of work there to just even reducing fluoride intake.......drinking spring water helps me with a lot less aches and pains at night, guess it helps me detox better, and avoid the fluoride in our regular water supply.  (They even have floruide filters for the shower!  (I haven't gone that far with it yet).  )

At any rate, "Hang in there".  So, will  I.  Share anything that helps you if not mentioned above. 

(I do remember something about the "keto" diet looking interesting.   I'll revisit that - Thanks!)

Have a good evening.  

 

 

 

 

 

 

 

 

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Squirmingitch brought up the macaroon idea, I find Zsweet, and Swerve Sugar Free sweeteners do not throw me out of keto and I use them to make my "treats" You might sub it in these if your like that idea. I personally just use coconut and almond meal in my baked goods with high fat nuts like walnuts and pecans (Walnuts and pecans have so much oil in them you can butter then in a blender or food processes into a pour able sauce that can be used as a dressing or mixed with eggs and coconut flour into a dough)

Also brought up batch beans....bad idea for keto, but to integrate a keto version, try cooking a roast in a crock pot, or a whole bunch of chicken breast. You can eat on it for a week just serve it over greens. Or Miracle Rice (zero carb rice) Batch cooking will become a life saver. (works with some foods) and meal preps give you time to just grab a pre fixed meal out of the fridge and go if you need to do something later in the day. First year I was gluten free I did this daily for myself before meat became a issue (I look forward to doing it again).
 

CB brings up the issue of selenium and melotonin. YES this is a huge thing and completely evaded my thoughts. I consume massive amounts of seeds, like pumpkin, sancha inchi, hemp all high in these in addition to flax and chia. I tend to rotate my seeds to prevent intolerance issues and only the roasted ones. Look up GERBS allergen friendly foods for pumpkin, hemp, flax, and chia.  I suggest the ground flax under meals as the seeds I notice have issues, I personally always have to cook my chia, and flax seeds into egg dishes or I can not eat them. If you blend them in with the eggs  1-2tbsp seed meal to 1 1/2 cups eggs -1/2 cup almond milk 2tbsp coconut flour and some almond butter and stevia to taste let it set up 5-10mins then blend again you have a batter for pancakes/waffles/doughnuts/breading batter. >.> something like this I whim it as a chef.

I was thinking of another think I like to snack on. Rythem Super foods roasted kale and the kale chips in moderation. I also crush the kale chips up and sprinkle over eggs as a condiment, Adds plenty of vitamins and the ranch flavor for this is amazing.




 

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17 hours ago, AAtroposP71 said:

still feeling it now 2 days later despite sleeping closer to 14 hours a night since

Have you had a sleep study? I have severe sleep apnea and used to sleep 12 hours a night and still was exhausted. Falling asleep at a stoplight exhausted. I do not fit the typical male and overweight stereotype either! But my cpap keeps me more well rested and alive. A sleep study is easy and it's the cost of an office copay. 

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Look at carreggenan. I am a super sensitive Celiac and have the same auto immune reaction to anything made with seaweed, “the wheat of the sea”, such as MSG, carrageenan, agar and sodium alginate. The food industry is putting it in everything, even so called Misbranded gluten free foods. Even some coconut milk brands now are using it as are nut milks. It is a cheap emulsifier, so we do not have to shake things up! How about shaking up my whole body from it! You may have an iron defiency anemia not being treated or tested. Cookbook doctors treat numbers not patients clinical presentation. I have fired five doctors in eight years for stupidity and dangerous lack of clinical acumen which could have killed me. Do not be afraid to ask questions and confront doctors, you are after all the customer paying for their services. 

Eat clean, meaning preparing your own foods. Stay out of restaurants! Gluten free is a joke in most restaurants if you are a celiac. And will cost you weeks of illness.

Hang in there. Make bone broth, it has super vitamins and minerals and loaded with pre and probiotics. Go to Dr. Axe’s site. I only do chicken made with feet. I am allergic to beef since being bitten by a deer tick in 2011 and getting Chronic Lyme disease. The chicken feet bone broth is also loaded with calcium and is yummy. Takes a little work, but is well worth it. 😊

 

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I signed up to make a post about my situation, but it seems like you just did it for me! I'm exacly the same, 6 months, it's better but not much.

I also had horrible doctor experience. Went to doctor, told that I most likely have problem with food, doctor signs me off as a depressed person, we take blood sugar test comes back normal, that was it. I was able to diagnose celiac disease my self. My "life raiting" did go up by 100 %. My insomnia of three years disappeared, my sweating disappeared (god I couldn't go anywhere without sweating), I also felt HOT all the time, like sleeping was difficult because I simply put felt HOT. But the worst part of all, brainfog. I didn't feel like a human for most of the part, I couldn't. At this point I really have to say thank you for my girlfriend, I cannot understand who she could bare with me all this time. Brainfog made me not able to hold a conversation, this was the biggest pain. 99 % of my words were: yes, no, maybe, I don't know. 

During the years, I went to doctor on numerous occasions, from ED to insomnia. Think, at age 23 I had to use viagra, and guess what? It had no effect whatsoever. When a penis is not hard enough for sexual intercourse with viagra, something is really wrong, but according to doctor it's stress. Right, with my gluten-free of 5 years, stress. Funnily enough, I did of course have "good boner days", I'm sure those where the days when I didn't eat gluten. After going gluten free, I have never had a day of ED.

I used to eat bread everyday, every morning, for lunch, for dinner, before bed.

All blood tests have come back normal. Flucuation in THS levels --> 3,9 this month, 2 a year ago. Everything else fine. I ate iron for 5 months (despite this my iron levels were just normal). I also eat all the B-vitamins daily, and other supplements such as magnesium. 

Now I'm running out of ideas, I'm lacking concentration, I'm... lacking a soul. Again, after my latest blood test came back, everything was normal, doctor told me I'm depressed. I refuse to believe this. I if anybody know myself, I'm not depressed, I believe there's an exetrnal factor which is contrubuting to my persisting fatigue and other symptoms.

I have had a share of good days and weeks. My university started in September, I was happy, I really enjoyed the two first weeks, then my fatigue suddenly came back, I coudln't get up from the bed, then I suddenly didn't go to school for two weeks. Now I'm... I feel brainfogged again. 

I'm keeping track of everything I eat, I also have a "health" diary in which I follow my poop, eyesight etc.

A question: is anybody else experience changes in their eyesight? On somedays I see laptop screen well, but on some days I barely can read text, it drives me crazy.

And sorry, the text is really messy. I just really want to share my expereince with you!

*in my country celiac disease diagnosis is only done by blood test which is why I can't get a diagnosis anymore (would have to eat normal diet for one month)

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5 hours ago, poroporo said:

I signed up to make a post about my situation, but it seems like you just did it for me! I'm exacly the same, 6 months, it's better but not much.

I also had horrible doctor experience. Went to doctor, told that I most likely have problem with food, doctor signs me off as a depressed person, we take blood sugar test comes back normal, that was it. I was able to diagnose celiac disease my self. My "life raiting" did go up by 100 %. My insomnia of three years disappeared, my sweating disappeared (god I couldn't go anywhere without sweating), I also felt HOT all the time, like sleeping was difficult because I simply put felt HOT. But the worst part of all, brainfog. I didn't feel like a human for most of the part, I couldn't. At this point I really have to say thank you for my girlfriend, I cannot understand who she could bare with me all this time. Brainfog made me not able to hold a conversation, this was the biggest pain. 99 % of my words were: yes, no, maybe, I don't know. 

During the years, I went to doctor on numerous occasions, from ED to insomnia. Think, at age 23 I had to use viagra, and guess what? It had no effect whatsoever. When a penis is not hard enough for sexual intercourse with viagra, something is really wrong, but according to doctor it's stress. Right, with my gluten-free of 5 years, stress. Funnily enough, I did of course have "good boner days", I'm sure those where the days when I didn't eat gluten. After going gluten free, I have never had a day of ED.

I used to eat bread everyday, every morning, for lunch, for dinner, before bed.

All blood tests have come back normal. Flucuation in THS levels --> 3,9 this month, 2 a year ago. Everything else fine. I ate iron for 5 months (despite this my iron levels were just normal). I also eat all the B-vitamins daily, and other supplements such as magnesium. 

Now I'm running out of ideas, I'm lacking concentration, I'm... lacking a soul. Again, after my latest blood test came back, everything was normal, doctor told me I'm depressed. I refuse to believe this. I if anybody know myself, I'm not depressed, I believe there's an exetrnal factor which is contrubuting to my persisting fatigue and other symptoms.

I have had a share of good days and weeks. My university started in September, I was happy, I really enjoyed the two first weeks, then my fatigue suddenly came back, I coudln't get up from the bed, then I suddenly didn't go to school for two weeks. Now I'm... I feel brainfogged again. 

I'm keeping track of everything I eat, I also have a "health" diary in which I follow my poop, eyesight etc.

A question: is anybody else experience changes in their eyesight? On somedays I see laptop screen well, but on some days I barely can read text, it drives me crazy.

And sorry, the text is really messy. I just really want to share my expereince with you!

*in my country celiac disease diagnosis is only done by blood test which is why I can't get a diagnosis anymore (would have to eat normal diet for one month)

I always thought that perhaps my eyesight being as bad as it is and declining as much as it did was due to my celiac (without glasses anything more then 2feet from my face is blurry) There is a interesting thing I read a few months ago that struck home with me, while not directly related to this, if you close your eyes and see little tadpoles moving around those are actually shadows cast by the larger white blood cells in your capillaries in your eyes slowing down the blood flow and the tail you see are a bunch of red blood palettes slowed down behind it. So when sick or have heightened antibodies you see more of these)

Yeah the fog, it comes and goes, comes and goes, sorta related to 2 things, 1 did you get "slight" cc? Like low gluten below 20ppm....sounds retarded I know but I did a experiment with some confirmed 6ppm contaminated hemp protein and a week long exposure. It did over a few days slowly ramp up slight fog, forgetful ness, that walking into a room then ....what was I doing, and with me nerve issues that caused me to drop stuff like crazy, and loss of sense of pain.  Other relations are and can be something slowing down or interfering with the nutrient absorption of b-vitamins, and minerals, Your already prone to this due to celiac damage but anything else that irritates, causing inflammation, or some kind of flare up. Can reduce them even more and cause the side effect of a almost gluten like brain fog. Finding your triggers for these like day dairy, soy, some other grain, nightshades, etc. and removing it can reduce the chances of this of happening. You can boot your supplementation during these bouts to help out. I find Liquid Health Stress & Energy and Neurological Support 1tbsp each 3 time a day is a life saver from preventing dips in concentration and fog.

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5 hours ago, Ennis_TX said:

Thank you for the reply Tyler. I have been thinking about possibility of cc. However, we eat mostly fresh food -- we don't really use products that are prone to cc. Then again, sometimes my wife likes to eat bread and such. We put everything in the same dishwasher -- I don't know if there's a possiblity this leads to cc. I have been otherwise 100 % strict with staying gluten free best to my effort. Most of what I eat consist of fruits, vegetables, nuts rice and meat.  

Memory is also a big issue for me. And boy was it a big before going gluten free. I remember an occasion where we played a "remember the name" games during the first day of university. I, hands down, was the one with worst performance. While others got maybe 80 % right, I was maybe at 20 %. This is just one of the many, many examples I have. I always, always wondered how others can perform (mentally), remember and do "brain tasks" so well. Honestly, I felt stupid. 

Anyway, I feel like I'm running out of options here. I guess I will try stronger vitamin B products, but I don't expect anything. 

Another thing I'm going through right now. I'm cold all the time. I live in Finland, yes it's cold here, but I have never ever before been like this. Like I said in the earlier post, I used to feel hot no matter what. Now it's the opposite -- or maybe perhaps I'm just getting used to what's normal. It's a new situation for me. 

And more babbling... an amazing coincidence after I went gluten free. My shin splits of 7 years, yes, my shin pain of 7 years which prevented me from running, and even walking a mile would be pure hell for me even I'm otherwise in decent condition. Now, after going gluten free in the spring, since then pain has vanished, completely gone. I don't want to claim it's any way related to celiac, that's far fetched I think... But after doing surgery, going from doctor to doctor, doing tens of sessions of physio, after nothing seemed to improve the condition of my legs... then they suddenly decide to heal them selves?

So at this point, concentration and fog are the only remaining issues I'm facing. I'd be willing to give up all four limbs for the fog.

 

 

 

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3 minutes ago, poroporo said:

Thank you for the reply Tyler. I have been thinking about possibility of cc. However, we eat mostly fresh food -- we don't really use products that are prone to cc. Then again, sometimes my wife likes to eat bread and such. We put everything in the same dishwasher -- I don't know if there's a possiblity this leads to cc. I have been otherwise 100 % strict with staying gluten free best to my effort. Most of what I eat consist of fruits, vegetables, nuts rice and meat.  

Memory is also a big issue for me. And boy was it a big before going gluten free. I remember an occasion where we played a "remember the name" games during the first day of university. I, hands down, was the one with worst performance. While others got maybe 80 % right, I was maybe at 20 %. This is just one of the many, many examples I have. I always, always wondered how others can perform (mentally), remember and do "brain tasks" so well. Honestly, I felt stupid. 

Anyway, I feel like I'm running out of options here. I guess I will try stronger vitamin B products, but I don't expect anything. 

Another thing I'm going through right now. I'm cold all the time. I live in Finland, yes it's cold here, but I have never ever before been like this. Like I said in the earlier post, I used to feel hot no matter what. Now it's the opposite -- or maybe perhaps I'm just getting used to what's normal. It's a new situation for me. 

And more babbling... an amazing coincidence after I went gluten free. My shin splits of 7 years, yes, my shin pain of 7 years which prevented me from running, and even walking a mile would be pure hell for me even I'm otherwise in decent condition. Now, after going gluten free in the spring, since then pain has vanished, completely gone. I don't want to claim it's any way related to celiac, that's far fetched I think... But after doing surgery, going from doctor to doctor, doing tens of sessions of physio, after nothing seemed to improve the condition of my legs... then they suddenly decide to heal them selves?

So at this point, concentration and fog are the only remaining issues I'm facing. I'd be willing to give up all four limbs for the fog.

 

 

 

Often people find that the leg and muscle pains are related to magnesium deficiency, another side effect of the celiac disease. Feel free to do research on various symptoms and magnesium deficiency. As you heal it can go away >.< Mine is still quite bad but the more you work out and emotional stress increase your bodies need of it SO I still have to supplement since I walk a lot and workout often.

In a non dedicated gluten free home with other gluten eaters CC will happen at some point in time, The fact is residue can set you off, the gluten protein is smaller then a germ. Think like trying to clean blood off something where a CSI tech can not find protein traces of it left.....yeah it's like that. Perhaps find a compromise and find a good gluten free bread? I run a bakery myself and make gluten free bread, desserts, etc. I used to live in a shared house 4 years ago, and I HAD to move out due to CC issues. Fun fact, if someone is cooking with flour,,,that can stay airborne for hours....yeah dread that white poof from that bag cause it will settle all over you kitchen.

Extra measures butcher/Freezer paper is a god send for making a clean prep surface and cleaning up is much easier, Foil line baking dishes, and pans for extra measure, Toaster bags for breads, crockpot liners for crockpots, and if you really want to be critical use disposable dishware, and utensils. FUN clean up fact, you can save glutened cast iron, as a protein gluten can be destroyed at over 500F. SO the self clean function on your oven can be used to decontaminate cast iron.

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Cross contamination is a big one, Tyler is correct. My husband and I have separate toasters, peanut butter jars, margarine tubs and only buy safe condiments in shake or squeeze bottles. I use parchment paper or foil on all baking sheets. We use the sanitize cycle each time we use the dishwasher. We even have double ovens to safely bake or roast gluten free foods in one, gluten foods in the other. Counter tops are another place for cc to take place, butcher paper is a great idea, or waxed paper. Do not trust gluten free labels on food. Read the ingredients, so many are Misbranded and contain gluten or are cc in the factory.

A thought that I had if you are also cold all the time, you need a COMPLETE thyroid panel. TSH, T3 and free T4, in other words the whole nine yards insist on a complete thyroid panel. You may be hypothyroid so many of us Celiac’s are. Depression and fatigue are symptoms of low thyroid.

Have you been tested for iron deficiency anemia. Your hemoglobin or hematocrit May be low. Most celiacs have iron defiency anemia.

 

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    • Just needed to point this out while it seems the UK and perhaps even Canada they are. The US McDonalds has wheat in the fries.
      Second thought in the US you have to a take more careful with CC and chains, the kids go in and out of these like crazy and think gluten free is a kind of fad. I would avoid chains of fast food restaurants here if celiac.
      Sorry just did not want some bloke from here in the US seeing this and going OOHHH the fries are SAFE, then blam married to the toilet for hours.
      " FRENCH FRIES Ingredients: Potatoes, Vegetable Oil (Canola Oil, Corn Oil, Soybean Oil, Hydrogenated Soybean Oil, Natural Beef Flavor [Wheat and Milk Derivatives]*), Dextrose, Sodium Acid Pyrophosphate (Maintain Color), Salt. *Natural beef flavor contains hydrolyzed wheat and hydrolyzed milk as starting ingredients. Contains: WHEAT, MILK. " https://www.mcdonalds.com/us/en-us/product/small-french-fries.html PS I have worked concessions years ago,,,,the fryers were like toys to us, we fried other foods for giggles.....so you can imagine how it might be a issue with a CCed fryer even with any place that has a non dedicated gluten-free fryer.  
    • I hope I'll be fine too.
    • Bone scan is because coeliac (may as well spell it right if I'm talking to a countryman  ) can affect bone density and is linked to osteoporosis  https://www.bones.nih.gov/health-info/bone/osteoporosis/conditions-behaviors/celiac the thing about the diet is that gluten isn't something that disagrees with you, or that you have to cut down on, or just save for special occasions. It would be nice if that were the case, but it's just not so. its your immune system which is being triggered. It's not an instant reaction, so you can fool yourself into thinking that it's ok. what the tests show however is that the damage is taking place over a longer term and across your body. For your own sake you need to develop this understanding. Joining coeliac uk would help. You get a book / online directory of safe foods and others to meet up with if you want. if your out and hungry McDonald's fries are ok. If dairy ok then have a strawberry sundae, not the toffee one. Those and a coffee are all I have from there now, although you are supposed to be able to order a burger without a bun, some have done this and used lettuce to hold it! Wetherspoons have gluten free menu and some other chains.  Its also good to travel with some safe snacks. Protein bars, fruit, nuts etc. Enough so you don't feel tempted to risk something which isn't safe. some good tips here one final point, at the moment you are in worst of all worlds. All he hassle of the diet, none or not enough of the good healing feel. You need to get the diet cracked and eliminate gluten entirely, eat lots of nutrient rich foods and kick start the feeling good vibe, because once you get that all of it, the diet, the reading of labels, the awkward conversations etc all become 100 times easier. You just need that connection between the diet and feeling good again. Get that and your on your way. all the best matt
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