grey

I know what you mean - I always hated birthdays in school because everyone would stare at you during the singing! For that matter, I never sent anything back or liked to ask too many questions of waiters, etc.

In some ways, celiac has been good for me, learning to do these kind of things; it's gradually getting easier. Although, sometimes, I will avoid a situation if I feel too overwhelmed to answer questions.

Mostly though, I enjoy talking with people about celiac if they seem interested. I think it's funny that I ended up having celiac when I'm so embarrassed about talking about digestive symptoms. The most I'll ever say is "GI problems". Nobody, except those who are dealing with stuff themselves, has ever gone further, and nobody's ever - even when they have a laundry list of symptoms - asked me more questions! Sometimes I'll say something like your body can't absorb nutrients from food - without the details. "Multisystemic autoimmune disorder" ... and mention symptoms like fatigue and migraines.

One thing to remember is that most people don't embarrass that easily about this stuff, so it's really about your comfort level. (And that that's important too).

And, I too, when in public will sometimes default to food allergies, or even just "funky food issues"!

Lucky you to have found some people to talk with.

I'm at almost 2 years since dx; a lot of things have gotten better, but I think I might still have some issues.

I'm not sure. I had symptoms of celiac for at least 8 years pre-dx, and possibly another four years before that. I don't know what's it like to be an adult without health problems, even if my general health isn't dreadful now and wasn't always dreadful then.

What, for example, is a normal energy level? Normal GI function? How do I know if I have more bowel movement than normal or if they're normal? If something is celiac-related or just the fact that the last time I was truly healthy I was in my early 20s, and now I'm in my mid-30s, and maybe I just have less energy because, well, I'm not in my early 20s any more.

Is my insomnia celiac-related? My migraines?

Is it weird that I'm tempted to eat a fresh-baked loaf of bread, not because I actually want it, but because I would kind of just like to watch myself as a science experiment to see what would happen?

My blood tests came back good, that I was compliant with the diet and I'm extremely careful - I live alone so it makes it relatively easy to be pretty careful. But I find it hard to believe that eating out, etc., that I've never been glutened. But I'm not sure ... I don't know how it'd feel. And, while I have bouts of D or fatigue, I can't tell if they're just regular or brought on by something. I mean, shouldn't I be having a really dramatic reaction?

I'm not sure what I'm asking, I guess I'm just having some trouble coping. I usually cope pretty well, but I think I was hoping on some level to have more energy and health than I do once I got better. Like I've been holding my breath, waiting, and now I just feel like, well, is this all there is? Is this as good as it gets? I've had a little distance from when I was really sick, in the hospital and all, and it just doesn't seem that different. I KNOW it is, but it doesn't *feel* that way emotionally, and sometimes I wonder why I'm doing this.

I guess I'm just looking for someone to listen; so thanks...

I've noticed my vision changing since going gluten-free; in fact I literally *just* made an eye appointment before going online.

If you're having rapid changes, you should definately get checked. Presbyopia is a slow change, so that doesn't sound quite right. However, I think I'm noticing so much more about my body and health since going gluten-free that some things seem new or rapid that have been happening for a while.

Dangerous Grains suggests that the newly dx'd/gluten-free should hve their eyes checked quarterly becuase of the possibility of rapid vision change.

Thanks for the comments! I too always thought they were normal -but I'm learning a lot of quirky things I thought were normal were celiac disease.

I ran out of my old toothpaste (Crest) not long after being dx'd, and used a some small travel ones, then switched again to a full-size Crest (which I thought gave me a rxn), and then to Tom's of Maine. Maybe that's why I had more after dx - all the changing.

I know all of these have sodium laurel sulfate - I might try switching to one without.

I'm fascinated by the garlic; I haven't eaten much since dx, but maybe I'll try it with the next outbreak!

thanks

Hi Liz,

It sounds really rough. It's hard out-of-school how to figure out these things, in school it must be so much worse.

I had a couple of thoughts . One, check into Thai and Vietamese food. I think there's a number of things that are ok to eat at both for the gluten-free diet. I have a book called Let's Eat Out! Your Passport to Living Gluten and Allergy Free, by Kim Koeller and Robert La France. It's got a whole chapter on Thai, with a sample menu of possible Thai foods and what specifically to check on while ordering. Pad Thai, for example, looks pretty ok. You might go to the restaurants on off-hours and talk to the managers - if you eat there a lot it'll get easier.

My other thought was about stocking the freezer at the sorority house with gluten-free pizzas and cookies. Maybe they'll let you have a toaster oven in your room or the kitchen that's just yours. It can warm up things really fast from frozen. Granted, it's not as good as ordering the pizza, but it won't take any longer, and you'll be eating the same kind of food. Same with the cookies. I'm sure you can get recommendations on the boards for good ones, and even thought they're expensive, so are delivery pizza and, I assume, cookies! Better than making yourself a sandwich, maybe.

A cookie bakery that delivers! Wow.

I wish I had a better solution to offer.

Good luck with everything.

grey

Hey there,

I haven't been around in a while but I've been busy with life/work/etc. Thought I should come back, as I'm really starting to miss the support of others who can relate to being gluten free.

My basic story in a nutshell is that I'm going to be living in a sorority house this year. Food during the week shouldn't be a problem. Our chef is awesome and I've already alerted them to my gluten issues. I'll be able to talk to the chef directly once I get back to school and I should be able to work something out. I'm not overly concerned about that.

What I am concerned about is weekends/evenings/nights out with friends.

On weekends out chef doesn't cook anything, so we're on our own. Most girls just walk a block over to a little area with a couple dozen restaurants or so and buy stuff. I should be allowed to use the kitchen if need be, so I should be okay for the most part. What's really got me down is that I actually like most of the restaurants in said area and am not sure how well I'll handle an entire school year of watching allllllll my sorority sisters eat burritos/pizza/sandwiches/whathaveyou in front of me. Sure, I could pop into the kitchen and make my own sandwich, but it's not quite the same, you know? And what happens when I go out and party, come home, and all my friends order pizza at 1 in the morning? Or worse, the COOKIE restaurant that delivers hot cookies until 3 in the morning???? I'm already struggling to some extent with the foods I miss and can't have anymore, and I'm worried that at some point I'm just going to give up and eat something out of the sake of convenience or just plain missing it.

There are only a couple of restaurants I think I can eat at in said area. There's a sushi bar but it's expensive. If Qdoba emails me back and lets me know what I can or can't have, I may be able to eat there, too. And that's about it. Forget the cookie restaurant, all three sandwhich shops, the three burrito places, the several thai/vietnamese/chinese places, the two pizza parlors, and even the ice cream shops. If cone crumbs get sprinkled over the ice cream I order, I'm screwed.

I just don't want to feel left out. These are places my friends eat every day, the temptation is going to be very real. I don't mind munching on a Larabar in a restaurant once and a while, or trying to scrounge something "safe" off of a menu when need be, but this is going to be the reality for me and I don't want this to become such a huge emotional strain that I freak out/break down/start eating gluten again.

Does anyone have any advice for me? I'd really appreciate it. Thanks.

I'm really pretty bummed.

I've been gluten-free since the end of May, but I'm still really struggling with some of the neurological symptoms of Celiac Disease. Among others, concentration, focus, memory, and aphasia. My therapist ran through the DSM manual for ADHD and I meet all the criteria. Several family members have been dx'd as adults or children.

She brought up the possibility of medication; that maybe the meds for ADHD might help me with the brain fog and neuro symptoms until I heal more. Or maybe in general, because maybe this is separate from the celiac disease.

So... my question is - has anybody had an adult ADHD dx with Celiac? I found some literature on medline that suggested the gluten-free diet could help ADHD, but what about vice versa? Can adhd meds help Celiac?

I'm scared of more meds, but I'm also so tired of being confused and out-of-focus.

Thanks

What is ora5? Is it a topical thing? I'd like to have some on hand. It took the last batch a really long time to heal and they were excruciating. Is it over the counter?

Yeast overgrowth is interesting and I need to look in to that. I'm already on B12 injections and a low-acid diet - which improves other things, but not this, sadly.

thanks

My wife has celiac disease and pernicious anemia, so she has to get the B12 injections. She says that helped a lot with the problem. She believe hers had something to do with yeast overgrowth (also had some female troubles too that went away with the B12 shots).

I also get them, but I think mine come from stomach acid overproduction. I try to change my diet to help. I also got myself a product called Ora5. It helps get rid of them pretty fast.

When I was first dx w/ low B12 (2001?), my rheumatologist did a Schilling Test. It was negative for PA and so he told me I was just depressed and should take a multivitamin!

I would imagine that you have a better doctor than that (I hope), but don't let them tell you the Schilling Test is the 'gold standard'. It's REALLY old-fashioned and is pretty inconclusive.

I now give myself B12 shots every other day (it was monthly, then 3 weeks, then weekly ... then the IV after my celiac dx). I bruise a lot as well, but the B12 shots are all that's kept me going for the past years so I'm hesitent to switch.

Still don't know if I have PA - there's a family history - but my gastro said it didn't matter since I'd be getting the B12 & gluten-free no matter what. My PCP assumes PA, but I'd like to know.

One thing about B12 is it's a vitamin you can't overdose on. If you have too much, you pee it out. Also, often, the amount you need if you're deficient is wildly more than normal people. If you can digest it by stomach, make sure you're getting animal products in your food. Vegans will be deficient, for ex, w/o supplementation.

B12 can make a HUGE difference when you make up the deficit, and very quickly. Hope it helps you.

All best!

IF (Intrinsic Factor) levels and/or antibodies are tested when suspecting Pernicious Anemia. I think there may be another marker, but I can't think of it off the top of my head!

Someone step in if they can think of it!

I'm glad to hear it's not lupus!

Be careful with the soy milk (you probably already know this), some are NOT gluten-free.

I use almond milk; I think it tastes a lot better and it's less soy (especially soy lecithin) which causes problems for a lot of us.

On replacement milks - I love the Pacific Almond milk. I've used in place of milk in smoothies and once in cooking and it did fine. And it tastes great on cereals.

Be careful with replacement milks - a lot of them have gluten and soy, even if they're rice milk, for ex. and it varies by brand. Really check the labels.

Definitely cut out dairy for awhile to see what happens.

With lactose, the issue is that the corresponding enzyme, lactase, is secreted from the tips of the villi. Every celiac w/ significant damage (flattened villi) will have lactose problems. As the villi repair, it'll be less and less a problem.

BUT, there's another milk issue too. The milk protein, casein, can be a problem due to what's called 'molecular mimicry'.

Parts of the casein molecule are shaped like a gluten molecule.

When ppl say Gluten-free Casein-free diet, it's gluten and casein.

I do wish I knew whether the casein side of the milk issues can go away.

Somehow things like non-dairy creamer CAN have casein, AND have the fine print admit "milk derivative", yet the big letters still say NON-DAIRY!!

Makes so little sense.

Anyway, in place of milk for cereal I use a ricemilk by WestSoy or a hazelnut milk by Pacific.

Many celiacs have problems w/ soy, btw.

Good Luck!

I'm still struggling with healing, but it has gotten better since I was dx'd at the end of May. I didn't notice much improvement for the first month. Cutting dairy and soy, and avoiding raw veg. and most raw fruits has helped a lot. Your intestine needs a break! And, while some people have a near-instant change, more take time. You just started-it took years to damage yourself - give yourself some time to heal.

Also, have you been checked for vitamin/mineral malabsorption? Getting my levels up helped, as did cutting out some medications (on doctor's orders and under observation). It turned out I wasn't absorbing some meds right because of the celiac so they were damaging other parts of my system. I also had one med I was taking that had gluten in it, and getting rid of that definately helped!

Btw, getting rid of nonstick, plastic and wood from pre-gluten-free days is important. If there are scratches in the nonstick, for example, it's impossible to clean the pan well enough to get rid of the gluten (it's pretty sticky, too). Metal and glass seem to clean better.

good luck

It is hard to do on a budget!

My main suggestion is to check out your local farmers' market. I don't know where you are, but there's probably one nearby on a Saturday morning. Kale at the supermarket? $2.50/bunch. Kale at the farmers' market? $1/a bunch. Organic eggs at the farmers' market are cheaper and my market also has a bunch of meat vendors. It's great because I can meet the people raising the pigs, cows, elk, whatever and they tell me exactly what they fed and how they treat their animals. I know it's antibiotic-free, non-GMO and it's cheaper. I don't know what I'm going to do when the markets end in October!

There are also CFAs in many parts of the country, which I think stands for 'community farming association'. You join and get a big basket of fresh veggie/fruit each week. You don't know necessarily what you're going to get beforehand (what's ripe/ready!), but it can be a big savings if veg is one of your $$ items. You end up eating seasonally, which is healthier, and it supports local farming

Remember to save receipts, etc. because the difference between gluten-free food and regular food is tax-deductible if medically necessary.

The other thing I do, as another poster suggested, is cook a lot from scratch and avoid processed foods. But, it's time-intensive. Look also to your drinks-buying organic juices and sodas is very $$

There's also an autoimmune disorder called Sjogren's Syndrome. The glands that produced mucus, salvia, and tears get inflammed or destroyed. Problems with the pancreas can also cause dryness problems. An ophthamologist can check on Sjogren's; it can be fairly mild, I think, and any time you have an autoimmune disease, you are more prone to another one.

I too have 'sandy' eyes and a sensitivity to light, but no idea what's causing it. I have always assumed too much staring at the computer screen, fatigue, and migraines.

I'm interested to keep reading this thread. Good luck with your eyes!

My arthritis pain got worse after going gluten-free. I've been doing occupational therapy on my hands and while my wrists are improving (tenonitis too), my hands are still pretty painful. My neck doesn't seem to have gotten worse, too much.

I agree that celiac has a loud voice. As some of my other pain (digestive, migraines) has receded while gluten-free, other things have gotten more noticeable and more painful.

I'm in my early 30s too, and I get frustrated too sometimes about things like arthritis and osteopenia, not to mention the brain fog. I can't imagine what I'll be like in 20 years. I just keep hoping the gluten-free will slowly improve things - it took years to do the damage, it might take months or years to repair.

Good luck.

Like Beth, I also ended up with an ulcer from NSAIDs. I also don't tolerate Celebrex and advil anymore, I get a severe fatigue rxn (like I needed more fatigue) and I'm allergic to percadan/percacet. The pain before dx was pretty bad, and I ended up with Alleve (because I could tolerate it, I thought) and other drugs for migraines. Both turned out to be doing a number on my liver and kidneys, as well as my electrolyte levels. Now I have Tramadol, which is from a different family of pain killers, for pain and take it with a tylenol (as prescription) - one bonus is it doesn't make me extra-woozey.

I've learned to be very very careful with OTC pain relievers! I'm also a huge fan of hot baths, heating pads, and microwaved hull pillows. And massage; it sounds a bit silly but foot and hand reflexology have been helpful to me.

My digestive pain decreased dramatically, although it didn't go away, about 6 weeks into gluten-free. I'm also pretty careful about eating to digest foods, more so than I was before dx, which has helped.

Good luck!

They could be related.

Quoting Peter Green, head of the Celiac Disease Center at Columbia, Celiac Disease: A Hidden Epidemic:

p 86-87

"The well-defined neurological associations with celiac disease include the following:

- peripheral neuropathies (numbness and/or tingling in the hands and feet)

- ataxia (balance disturbance)

- epileptic seizures, with and without intracranial calcifications (calcium deposits in the brain), particularly in children

- migraines

- brain atrophy and dementia

Any one of these complications may affect as many as 8 to 10 percent of people with celiac disease."

On p. 87-89 he talks briefly about epilepsy & seizure, and migraines.

One thing on p88 "The relationship between epilepsy and celiac disease may be simply be the occurrence of two relatively common diseases in the same patient. For others, especially in children, the connection is more clearly defined."

There are definately studies on celiac and migraines, and celiac and seizures, but I don't have access to medline now. Someone may post links to some in the this thread.

I have severe migraines that weren't resolving after years of drug therapy-no meds would help. (I've tried all kinds of things, including anti-epileptic drugs). That and a B12 deficiency were what caused my primary care physician to test for celiac.

I've been gluten-free since the end of May. I had a set of bad migraines right before going in the hospital and getting treatment for 'celiac complications' which including severe vitamin and mineral deficiences. Since then (in the past month) I've only had one (lasted 2 1/2 days though) and it was mild. It was clearly triggered by having gotten only about an hour of sleep and allergies.

Has your daughter been dx'd with celiac? Most important, has she had vitamin and mineral levels checked lately? If she's deficient, that could definately be causing or adding to her condition. B12, potassium, and magnesium are just 3 that are related to migraine; other nutrient def. also have severe effects on the neurol. system.

It's definately not just you and your family. I hope your daughter's health improves.

I was wondering if this just concerns us and my family , my daughter has celiac and recently developed severe migrains that seems no meds will help and as of 2 weeks ago seizures all throughout the day even in her sleep , she is 12 .....

is this just her body or does anoyne else with celiac know of or also go through anything like this ????maybe it's not related but I thought I could ask????

Thank you .

FYI, I think this is probably the syndrome your doctor was talking about: Guillain-Barre Syndrome.

This is the link to more info at the Mayo Clinic, including a symptom list.

Open Original Shared Link

this is the internation foudation for the syndrome.

Open Original Shared Link

I hope your health improves.

Add me to the column of people who never really realized that the D was abnormal. In fact, I didn't even know it WAS D until I was dx'd. I thought D was just the explosive stuff and only had that sometimes. I probably have most of the possible celiac symptoms and have had off and on for many many years.

I've had 2 serious flares that put me in the hospital for tests before the current flare (and dx); they never found anything and I had thousands of dollars of tests. I had a lot of fatigue, pain, and serious neuropathy for no apparent reason. I don't think I even mentioned the D, gas, etc because I was really embarassed about it. I still find it hard to talk about my GI system!

The most recent flare - I lost almost 50 lbs, the GI got so bad I finally said something to my md, and my blood tests (liver enzymes, all vitamins and minerals, RBC, WBC) tanked. But until then, I mainly thought I just had a lot of smaller things that didn't connect. I also put a lot on my allergies - which are now mostly gone gluten-free - but most of all STRESS. Nearly everything I blamed on stress, so I kept saying it'll be better when I get a break, but it kept getting worse instead. I grew up as an athlete and I can handle a lot of physcial pain and fatigue before I'll complain or worry about it. I covered it all pretty well and people didn't realize how sick I was until the very end before the dx-and I didn't look 'sick'. I think that slowed my dx a lot - most things just never seemed bad enough and I didn't want to go through more expensive tests. Thank goodness my md thought to test celiac. I was mainly worried about my B12 levels and my endless migraines. I was in really bad shape when I was dx'd, far worse than I knew at first. Could have knocked me over with a feather when I got the dx!

Is the feeling worse when you've had a big day the previous day? Does it not get better after sleep? Sometimes resting helps, but usually only for a short time, and then I feel like I've burned through the energy really quickly and like I hit a wall or the bottom dropped out and I'm absolutely drained. Like I'm heavier and being drawn to the earth, to sit or lie down. I feel a lot of inertia, like it's really hard to get up and move.

It's a different feeling than being just tired or sleepy, although you might crash out pretty easily. I get spacey, confused, and woozey, and if I don't force myself to focus, I'll lose my grasp on spatial relations (put down the cup in the wrong place, walk into the door frame w/ my shoulder).

On a good day, I can do some exercise or something pretty energetic, but I don't have any stamina and the time to recovery is really long. Also, often, the next day I'm wiped out. I also have brain fatigue if I'm focusing for a long time. (The joys of neurological symptom-celiac). Out of it definately describes it!

I had kind of 'hot flashes' before I went gluten-free. Happened mostly at night and occasionally in the morning and would wake me up. Usually preceded a migraine. Mostly I'm cold, but if I get too hot I'll stay that way and get woozy.

I don't know if this is what you were looking for, nor am I sure it's a great or complete description. Hope it helps though.

Thanks for all the info everyone. I'll talk to my md about upping the amount. I knew there was a certain of vitamin D I should be taking, but vaguely remembered there were other issues about type, etc.

I also have vague memory (I hate not having recall for reading, dratted celiac!) of reading that you should also avoid certain foods before and after taking it. Has anyone run into this?

thanks!

Getting rid of dairy and soy, and avoiding raw vegetables has helped my digestion. I juice to get nutrients and be nicer to my digestion. I don't know what you're using to flavor your food, but make sure you check your spices and condiments too. I ended up replacing spices (I have a Penzeys spices near me, and you can buy them in small amounts in plastic bags cheap), jams, pb (I went with natural, since most others have soy lecithin which definately increased D for me), soy sauce, mustards.

I still get bouts of D, but I don't know why exactly. They're definately less though and I don't have the emergency/urgency issues when I leave the house.

Are you taking a probiotic? That might help too.

I've been gluten-free since the end of May and while some things have improved, I'm still struggling. Thank goodness for this board! Good luck.

Thanks for your replies everyone. It's good to have your support and be able to come here to talk about all this.

I didn't have the biopsy, but I'd already had positive blood test (Endomysial Antibodies) as well as having all the symptoms so knew that I'd have to give up gluten regardless of biopsy result.

This afternoon I've been a little better again (smile on coming out of the bathroom!! ) I suppose I just have to be patient and not expect too much too soon. As you say, any progress is a good sign.

The kissing issue is something that I've wondered about too and even asked the dietician! She was impressed by me thinking to ask that but didn't know whether it would be a problem. It's tricky though isn't it. I want to do the absolute best that I can, but without becoming a reclusive hermit. Or getting divorced either! My husband is very understanding but everyone has their limits I think! I'll have to try the softly softly approach and see how much gluten I can weedle out of my husband's diet!

I think I'll have to try to be more gentle on my digestion while it's battling to recover, which reminds me, what I really should be doing is planning next week's menu now!

Thanks again all. This is a good place.

I give myself B12 injections every other day. But I'm still really struggling with fatigue and pain, like before I started them. I wonder if I need more per dose, or more of something else.

Protein, yes, but I'm not sure about carbs. It's hard to tell. I try to eat rice or polenta with dinner, and I juice or cook a lot of veg/fruit. I will look into ordering the tortillas, that's a good idea, and it would mean the occasional portable food.

I don't know my genetic profile. My mother was tested after I was dx'd, and she doesn't have celiac, but does have DQ1 so it's somewhat likely. My dad is still waiting on his results.

Grey, are you taking B12? You might need to get some B12 shots

also, are you getting enough protein & carbs everyday? I hope you find those Mission Brand White Corn Tortillas because they are really a quick, cheap, carb that goes with a lot of stuff. Just ask your grocery to order them for you, most grocery stores will do that. Get to know your store manager!!!

re nuero symptoms, I would guess that you are DQ1, we all have neuro symptoms

Corinne - I'm sorry you're going through it, but it's good to know that I'm not the only one dealing with this situation/ideas. It's one thing w/ the GI or pain, but another with the brainfog. Does your committee know about the celiac at all?

good luck with everything -

Grey - I too am on the tenure track; I just finished my first year. LOL about summers off - with 4 research students, grant writing, conferences etc. etc. it's still 14 hour+ days.

I've been gluten free for 3 years and also wish I had been diagnosed sooner. My 7 year PhD probably could have been done in 5 if I could have concentrated. I had a rough time last winter and gave some really bad lectures when the brainfog wouldn't clear and I couldn't think straight which definitely didn't help the teaching evals.

It's tough in academics. I'm afraid that if I admit how I'm feeling, that the tenure committee will go for the jugular.

Anyways, this isn't much help, but just wanted to let you know that someone else is going through similar things.

Hi,

Just had a dexa scan, and sure enough, I have osteopenia. My doctor has ordered me to take Vitamin D, 400 IU, 1-2x/day, retest in 6 mos.

I hoped someone could recommend a vitamin D. I was on prescription vitamin D for a short while; my blood serum levels were really low. Now, however, she's written OTC and I have to find something.

Also, how do I know whether to take 1 or 2 doses? Does the deep bone pain I'm having connect to the osteopenia?

Any other osteopenia recommendations? I knew this was a distinct possibility w/ celiac, but it's still disconcerting since I'm in my early 30s.

Thanks for reading another question from me!

Hi all,

Hoping someone might have some suggestions about coping with canker sores? I've gotten them my whole life, either with no cause or in response to mouth trauma (biting the inside of my lip, by accident, I'll usually get a canker sore on that site). Since going gluten-free, I've had more sores, and I now have a real doozy of a set on the upper left.

I'm also curious if anyone's been dx'd w/ aphthous stomatitis. I've read a little bit, but it's unclear to me whether all of these mouth ulcer are AS or only some, and how you tell.

So, if someone has an over- the-counter gluten-free remedy, or a way to get rid/less of them, or just has experience with them, I'd love to hear about it.