Newly Diagnosed; Still Struggling!

[ashylu929]

Hi! I've recently been diagnosed with Celiac through bldwork. (can't type the real word b/c I work at a school and this computer filters that word! haha) The diagnosis came in early October. I've been gluten-free since then....as far as I know. I am still confused about some conflicting things with whether or not certain things are allowed. Luckily, I meet with a dietician next week.

I have felt BARELY any difference AT ALL. What is weird was that initially I didn't really have many of the GI symptoms or stomach issues. I saw an Endocrinologist who just happened to test for Celiac and the Gliadin antibody was high. I went to the doctor initially because every day I get really bad headaches. I noticed a correlation that it often happened after eating. Now, i wonder if that was coincidence because I notice no specific pattern except that I get horrible headaches daily. Some days, they are worse than others (like today ) I also have a constant and persistent ringing in my ears. Does anyone else get this? What about the "brain fog"? I feel as though I am experiencing this -- I'll get a feeling like I'm "in a dream" -- (detachment) -- memory lapses trying to remember simple things or words -- inability to focus/concentrate/think clearly. Also, bouts with lightheadedness and tingly feelings in my hands feet or face from time to time. It is really starting to affect me! I see a neurologist on Tuesday to make sure it is nothing else. Additionally, I have severe fatigue. (some days barely at all, some days I feel like I'm sleepwalking all day long!) Other things worth mentioning are that I am constantly cold (however, when first diagnosed I ran a low-grade fever for a couple of days which initially provoked me to go to the doc) and increasingly irritable due to all of this. My nausea has calmed down and I barely ever have that issue anymore since going gluten-free. I see a chiropractor who suggested adrenal fatigue but my adrenal tests were normal. It is worth nothing that I have had rheumatoid arthritis for quite some time but it is in remission. (It is my understanding that both that & Celiac are autoimmune disorders.) I am off all meds from the arthritis b/c I was worried they were causing the problem. The one can cause lymphoma or aseptic meningitis. But again, all my work was ok, and my rheumatologist said that if it were the meningitis from the meds that it would have went away by now.

So, I wanted to know if anyone experienced these types of symptoms. It is just weird to me that I haven't really had many gastrointestinal symptoms. The headache today is pretty bad, and the ear-ringing is nonstop.

Also....I'm having problems with this all emotionally as it is just so frustrating!!! I know something is wrong, but I really want to know WHAT! I'm SICK OF BEING SICK. I just want to feel better. I've had chronic health problems my whole life but it's just getting to a culmination point where this is really affecting my everyday life & the quality of life. I feel like I'm a "bummer" to everyone around me and it makes me feel bad & guilty.

How long did it take you all to start feeling better?

[ShayFL]

Most need to be 100% gluten-free to heal. No wheat, rye, barley or oats. This means scouring your kitchen and removing old scratched Teflon pans, cutting boards, wooden spoons, toasters, etc. (as they can harbor gluten). This also means checking that all of your hair care, makeup, lip stick, chapstick, creams, etc. are gluten-free. It also means not kissing anyone who has eaten gluten and not brushed their teeth. It means making sure your pet's food is gluten-free. And kitty litter is gluten-free. It means if you live in a "mixed" kitchen never allowing anyone to use "wheat flour" as it gets everywhere and you cannot clean it adequately.

And for MANY it means giving up dairy until healed. It can be added back in later if tolerated.

It took me a good 6 weeks to start feeling better.

[ashylu929]

Most need to be 100% gluten-free to heal. No wheat, rye, barley or oats. This means scouring your kitchen and removing old scratched Teflon pans, cutting boards, wooden spoons, toasters, etc. (as they can harbor gluten). This also means checking that all of your hair care, makeup, lip stick, chapstick, creams, etc. are gluten-free. It also means not kissing anyone who has eaten gluten and not brushed their teeth. It means making sure your pet's food is gluten-free. And kitty litter is gluten-free. It means if you live in a "mixed" kitchen never allowing anyone to use "wheat flour" as it gets everywhere and you cannot clean it adequately.

And for MANY it means giving up dairy until healed. It can be added back in later if tolerated.

It took me a good 6 weeks to start feeling better.

Wow -- it really has to be THAT extreme? I mean, I understand some of it....but I guess I never thought about hair products (I don't ingest them....???) or the pet food, kissing, etc. To me, that seems a bit much. (Unless you are totally "swapping spit" with someone.) I would think that it is unfeasible to totally be 100% gluten-free all the time. Aren't there going to be times where it is unavoidable? (Accidents?) What do you do when you go out to eat? Did you have any of the head/neurological symptoms that I speak of?? Also -- if dairy bothered me, wouldn't that manifest itself in the form of stomach issues? I've never had a problem with dairy before....?? So much to learn and *SO* disheartening

it's been roughly 6 weeks, and no signs of progress for me so maybe I should take some of your advice that I haven't yet done.

THANKS for your input , though! Cute dog. What part of Tampa are you from? My boyfriend lived there briefly.

[ShayFL]

Im in Temple Terrace near the University where Hubby is a History Prof. I work from home.

Not everyone has to be that extreme, but there are quite a few who do because they are sensitive. If you are not getting results, then it behooves you to be a little more careful.

Hair products can easily get in your mouth when showering. My shampoo runs down my face and over my lips all of the time. It may not be a big deal for you, but until you get completely well, you will not know if it is a problem or not.

There are many fine gluten-free hair care and facial care lines. PLUS just call the manufacturers of the one's you use. They may already be gluten-free. Look at ingredients (wheat germ oil, oats are common in hair and face stuff).

Toothpaste...yup. I got glutened by Crestpaste dental floss!! Dang it!!

Many have gotten glutened by kissing their mate who had not brushed after eating gluten. French kissing type of kissing. A peck on the lips is not an issue. Dont think food in another's mouth can affect you when you exchange saliva? A few years ago, a girl died because she kissed her boyfriend who had eaten a peanut butter sandwich. She was allergic to peanuts and didnt get to her Epi pen in time. It had been a few hours since he had eaten the sandwich.

If your dog eats gluten and then licks himself and then you touch his fur and later forget and put your hand in your mouth (eating). Yes, it can happen. I am a dog lover myself and we rescue Great Danes. I can tell you from experience that gluten is NOT good for your sweet little doggie anyway. It is highly allergenic and causes all sorts of degenerative diseases in animals. Wheat isnt meant to be eaten by people or domestic animals (carnivores). Our Maile had seizures and skin rashes from wheat. Switched to lamb and rice and both cleared up. Yeah!!

Eating out? I dont right now very often. There are a few places I haunt. The Cheescake Factory close by has a manager who is Celiac himself. Last time he prepared my food himself and it was delicious and I didnt get sick. Others have good experiences at Outback, PF Changs, Bone Fish, Chipotle and others.

The MAJORITY of my symptoms were neurological: migraines, neuropathy and vertigo. A little loose bm's. But they were the least of my worries. I also have Hashimoto's Hypothryoid as a result of it. The migraines were the first to go and have never come back (except one time I got glutened from soy sauce).

When you have Celiac, the villi in your intestines are damaged. The very tips are the portion that digest lactose (the main sugar in dairy). Until those tips heal, you may not be able to tolerate dairy or get well. Many do not notice a sensitivity to dairy while still eating gluten because the gluten intlerance masks everything else. Once that irritant is removed, others may surface now. I know it is hard to give up 2 things. But look at the bright side, you will likely be able to add dairy back once you heal.

If you are not feeling better with dairy in the diet, if it were me, I would cut it out for now.

[lbd]

Are you taking aspirin for the headaches? Or a aspirin-like medication? Aspirin often causes ringing in the ears. I get it every time I take it, though since going gluten-free, I haven't had migraines - yay!

[curlyfries]

Let's see........

Brain fog and all the memory/concentration issues, ringing in the ears, lightheadedness, tingling, fatigue, constantly cold..........all me.

Add into that the GI/stomach issues and fibromyalgia.

Once gluten-free, I realized I also could not tolerate dairy or sugar.........hopefully it's only temporary.

It DOES take time.....and diligence about everything as Shay has said.

You could probably also benefit from some good vitamins/supplements and probiotics. I have not been able to afford to go this route, as yet, but I do take a good multi-vitamin, and there is quite a noticeable difference in my mood and general well-being when I've been without.

If your villi have been damaged, which is very likely, you have not been absorbing nutrients as you should.

BTW.......as long as I don't get glutened, brain fog is gone, along with lightheadedness, fatigue, and GI issues. Fibromyalgia is improved.

The ringing in the ears and constantly cold remain the same, so far.

[ashylu929]

Are you taking aspirin for the headaches? Or a aspirin-like medication? Aspirin often causes ringing in the ears. I get it every time I take it, though since going gluten-free, I haven't had migraines - yay!

No, I try to be as % free" as possible. Plus, I couldn't take asprin for years b/c of the arthritis meds I was on, so I just deal without. I take Aleve from time to time but most days I just live w/ the migraines b/c I've found nothing besides or sleep that really works for my headaches. I thought it might be a side effect from my arhtirits meds, but I've been off them for a while now.

[ashylu929]

Let's see........

Brain fog and all the memory/concentration issues, ringing in the ears, lightheadedness, tingling, fatigue, constantly cold..........all me.

Add into that the GI/stomach issues and fibromyalgia.

Once gluten-free, I realized I also could not tolerate dairy or sugar.........hopefully it's only temporary.

It DOES take time.....and diligence about everything as Shay has said.

You could probably also benefit from some good vitamins/supplements and probiotics. I have not been able to afford to go this route, as yet, but I do take a good multi-vitamin, and there is quite a noticeable difference in my mood and general well-being when I've been without.

If your villi have been damaged, which is very likely, you have not been absorbing nutrients as you should.

BTW.......as long as I don't get glutened, brain fog is gone, along with lightheadedness, fatigue, and GI issues. Fibromyalgia is improved.

The ringing in the ears and constantly cold remain the same, so far.

Thanks, yeah, my physical fibromyalgia symptoms stopped bothering me awhile ago, as my arthritis went into remission. (The muscle aches and tenderness and weakness, etc.) I also take a ton of vitamins and probitotics. Trust me, I've been doing this for years now. I take good natural vitamins, too, not overly processed manmade crap. They just dont' seem to be helping, etiher, but maybe my stomach isn't healed enough to fully be absorbing them yet. I've taken a plethora of good healthy vitamins for years now (seemingly to no avail) And while I understand being diligent, the official Celiac Association site as well as many in the medical field I've spoken to have said the makeup/shampoo/toothpaste thing is a myth, unless you are a child who swallows your toothpaste or shampoo They also said the kissing thing isn't true, unless you french kiss someone right after eating. This is coming from medical professionals and the Celiac Association not myself -- don't shoot the messenger But hey, maybe that stuff varies from person to person. It may depend upon how sensitve your system is. I'll have to try some of it, I guess...Ughh...this is the most frustrating thing I've ever dealt with. I'll take arthritis & fibromyalgia over this all any day!

[ashylu929]

Thanks, yeah, my physical fibromyalgia symptoms stopped bothering me awhile ago, as my arthritis went into remission. (The muscle aches and tenderness and weakness, etc.) I also take a ton of vitamins and probitotics. Trust me, I've been doing this for years now. I take good natural vitamins, too, not overly processed manmade crap. They just dont' seem to be helping, etiher, but maybe my stomach isn't healed enough to fully be absorbing them yet. I've taken a plethora of good healthy vitamins for years now (seemingly to no avail) And while I understand being diligent, the official Celiac Association site as well as many in the medical field I've spoken to have said the makeup/shampoo/toothpaste thing is a myth, unless you are a child who swallows your toothpaste or shampoo They also said the kissing thing isn't true, unless you french kiss someone right after eating. This is coming from medical professionals and the Celiac Association not myself -- don't shoot the messenger But hey, maybe that stuff varies from person to person. It may depend upon how sensitve your system is. I'll have to try some of it, I guess...Ughh...this is the most frustrating thing I've ever dealt with. I'll take arthritis & fibromyalgia over this all any day!

PS: I am glad to see I am not alone or crazy in experiencing the types of symptoms that I have been, considering they are not "typical" .. ya know? So thanks for sharing And feel better :)

[ashylu929]

Im in Temple Terrace near the University where Hubby is a History Prof. I work from home.

Not everyone has to be that extreme, but there are quite a few who do because they are sensitive. If you are not getting results, then it behooves you to be a little more careful.

Hair products can easily get in your mouth when showering. My shampoo runs down my face and over my lips all of the time. It may not be a big deal for you, but until you get completely well, you will not know if it is a problem or not.

There are many fine gluten-free hair care and facial care lines. PLUS just call the manufacturers of the one's you use. They may already be gluten-free. Look at ingredients (wheat germ oil, oats are common in hair and face stuff).

Toothpaste...yup. I got glutened by Crestpaste dental floss!! Dang it!!

Many have gotten glutened by kissing their mate who had not brushed after eating gluten. French kissing type of kissing. A peck on the lips is not an issue. Dont think food in another's mouth can affect you when you exchange saliva? A few years ago, a died because she kissed her boyfriend who had eaten a peanut butter sandwich. She was allergic to peanuts and didnt get to her Epi pen in time. It had been a few hours since he had eaten the sandwich.

If your dog eats gluten and then licks himself and then you touch his fur and later forget and put your hand in your mouth (eating). Yes, it can happen. I am a dog lover myself and we rescue Great Danes. I can tell you from experience that gluten is NOT good for your sweet little doggie anyway. It is highly allergenic and causes all sorts of degenerative diseases in animals. Wheat isnt meant to be eaten by people or domestic animals (carnivores). Our Maile had seizures and skin rashes from wheat. Switched to lamb and rice and both cleared up. Yeah!!

Eating out? I dont right now very often. There are a few places I haunt. The Cheescake Factory close by has a manager who is Celiac himself. Last time he prepared my food himself and it was delicious and I didnt get sick. Others have good experiences at Outback, PF Changs, Bone Fish, Chipotle and others.

The MAJORITY of my symptoms were neurological: migraines, neuropathy and vertigo. A little loose bm's. But they were the least of my worries. I also have Hashimoto's Hypothryoid as a result of it. The migraines were the first to go and have never come back (except one time I got glutened from soy sauce).

When you have Celiac, the villi in your intestines are damaged. The very tips are the portion that digest lactose (the main sugar in dairy). Until those tips heal, you may not be able to tolerate dairy or get well. Many do not notice a sensitivity to dairy while still eating gluten because the gluten intlerance masks everything else. Once that irritant is removed, others may surface now. I know it is hard to give up 2 things. But look at the bright side, you will likely be able to add dairy back once you heal.

If you are not feeling better with dairy in the diet, if it were me, I would cut it out for now.

Hmm, I guess it's hard for me due to contradictory things. My doctor told me that I should not worry about beauty products, kissing, toothpaste, and I also found the following off of a Celiac Info website....

CELIAC MYTHS:

Myth: Gluten can be absorbed through the skin.

Fact: Gluten molecules are too large to be absorbed through the skin. If you're having a reaction to a personal care product (for example, a moisturizer or a sunscreen lotion) that contains gluten, you may be allergic to one or more of the ingredients.

Myth: Celiacs need to use gluten-free cosmetics.

Fact: Celiac disease is triggered by eating gluten, so skin-care products and cosmetics that contain gluten aren't a problem unless you swallow them. Toothpaste, lipsticks, lip balms, and any product that will be used on small children should be gluten-free.

Myth: Celiacs need to avoid kissing non-Celiacs.

Fact: Unless you "tongue-kiss" someone immediately following a meal, chances are highly unlikely that you will get "glutened". Of course there are plenty of "urban legends" circulating about this, but for most this is simply NOT an issue.

Myth: You'll feel better as soon as you stop eating gluten.

Fact: The amount of time it takes to feel better after going gluten-free is different for every person. Some people feel the results right away, but others need weeks or months to feel results.

I suppose every person is different though, and it's worth a try.

I also will consider taking dairy out of my diet. I don't think I can, to be honest with you, lol, but it's worth a try if it will get rid of my neurological symptoms. Everything I read said that dairy/lactose intolerance was usually digestive in nature and I've had no stomach issues, but we shall see -- again, it's worth a try!!!

Who knew giving up food would be so hard! You don't realize what an important part of your life food is until you can't eat some of it

This sucks to say the least ... but hopefully I will feel better soon and be singing a different tune

Thanks for all of your helpful advice & tips!

[kbtoyssni]

Myth: Celiacs need to use gluten-free cosmetics.

Fact: Celiac disease is triggered by eating gluten, so skin-care products and cosmetics that contain gluten aren't a problem unless you swallow them. Toothpaste, lipsticks, lip balms, and any product that will be used on small children should be gluten-free.

The part of this statement that stands out is "aren't a problem unless you swallow them". Yes, that's true, but I have no idea how the heck you can avoid swallowing some of your personal care products. I get shampoo in my mouth in the shower a few times a year no matter how careful I am. That's a few glutenings I can easily avoid by using gluten-free shampoo. I play with my hair a lot so some shampoo residue gets on my hands, and my keyboard, and all over my kitchen and my house and will probably end up glutening me. If I use lotion on my hands, I know that gets all over my kitchen just from getting a glass of water. I don't want to be washing my hands to get that stuff off every time I go near a kitchen. And while I'm a pretty compulsive hand washer, I know there are times I forget especially when I'm at home. And I chew on my pens which I've touched with my hands which have touched my hair and face. I don't want to be constantly worrying about whether I might accidentally ingest my personal care products. I've found it easier to simply go gluten-free with them.

[ashylu929]

The part of this statement that stands out is "aren't a problem unless you swallow them". Yes, that's true, but I have no idea how the heck you can avoid swallowing some of your personal care products. I get shampoo in my mouth in the shower a few times a year no matter how careful I am. That's a few glutenings I can easily avoid by using gluten-free shampoo. I play with my hair a lot so some shampoo residue gets on my hands, and my keyboard, and all over my kitchen and my house and will probably end up glutening me. If I use lotion on my hands, I know that gets all over my kitchen just from getting a glass of water. I don't want to be washing my hands to get that stuff off every time I go near a kitchen. And while I'm a pretty compulsive hand washer, I know there are times I forget especially when I'm at home. And I chew on my pens which I've touched with my hands which have touched my hair and face. I don't want to be constantly worrying about whether I might ally ingest my personal care products. I've found it easier to simply go gluten-free with them.

Well, I am a weirdo b/c I shower with my back to the water...leaning my head back, so I rarely if ever get shampoo in my mouth I guess I'm lucky in that sense! I don't play chew my hair, either. Do MOST "mainstream" shampoos have gluten in them? I buy Paul Mitchell all-natural Special Green Tea Tree Oil Shamppoo/Conditioner. The only product I use for the most part is Moroccan Oil. I don't know if either has gluten, I'll have to look it up. Wow - I didn't know about all this, so thank you. I guess if I don't improve in time, I'll have to switch up my beauty products. Once I get in a routine with things that I actually like/that work for me, I don't want to switch lol but if it is harming my health, it's worth it in this case. Guess I have my work cut out for me with research!!!! TY and have a good wknd!

[kbtoyssni]

I think most Paul Mitchell products do contain gluten. It's not hard to find mainstream gluten-free shampoos. Suave, Dove, Fructis, Pantene, White Rain all have gluten-free products. Aveno and Tresame mostly contain gluten.

[ashylu929]

I think most Paul Mitchell products do contain gluten. It's not hard to find mainstream gluten-free shampoos. Suave, Dove, Fructis, Pantene, White Rain all have gluten-free products. Aveno and Tresame mostly contain gluten.

Hmmm what about the brands they sell at the salons? The more expensive shampoos? Do most of those brands have gluten? I will have to check out the product websites. I guess going back to Fructis or Pantene would save me some money at least! hehehe

[kbtoyssni]

Hmmm what about the brands they sell at the salons? The more expensive shampoos? Do most of those brands have gluten? I will have to check out the product websites. I guess going back to Fructis or Pantene would save me some money at least! hehehe

I've found most salon brands, the expensive stuff, contains gluten. They're advertised as all-natural which usually means wheat and barley extracts.

[Tallforagirl]

Personally I think you have to be realistic about these things. I only worry about the things I can realistically control such as crumbs of bread/flour or pasta contaminating my food. I live alone so there is no possibility of this at home. When I am eating out I use dscretion to decide whether I am likely to be safe - for example, although a local pizza joint does gluten-free pizza, they are cooked in the same oven as all the other pizzas - so I won't eat them, there is obviously a very real risk of CC.

None of the expert sources I have consulted have advised that you need to worry about teflon pans, chopping boards etc. As long as they are well washed, there is not an issue. The handbook given to me by the Coeliac Society here in Victoria Australia even advises about how to wipe down/shake down your toaster to dislodge regular bread crumbs, then make your gluten-free toast in there.

The example given in one post saying: "If your dog eats gluten and then licks himself and then you touch his fur and later forget and put your hand in your mouth (eating)." - well I would not consider this a real risk. If you pet your animal and then don't immediately wash your hands after, you are asking to get sick anyway, this is just basic hygiene.

Be real people.

[saralis27]

Also....I'm having problems with this all emotionally as it is just so frustrating!!! I know something is wrong, but I really want to know WHAT! I'm SICK OF BEING SICK. I just want to feel better. I've had chronic health problems my whole life but it's just getting to a culmination point where this is really affecting my everyday life & the quality of life. I feel like I'm a "bummer" to everyone around me and it makes me feel bad & guilty.

This exactly describes what I'm feeling. Thank you for sharing, it's good to know I'm not the only one having this issue. Good luck figuring it out! I hope you have better luck than I am at the moment.

Take care!

[ashylu929]

I've found most salon brands, the expensive stuff, contains gluten. They're advertised as all-natural which usually means wheat and barley extracts.

Thanks....I talked to one of my best friends who owns a salon (and never would lie to try to get me to spend money lol) who says that she has a Celiac client who always uses the same products as me and has never been "glutened" by it. She also asked a GI who she services who said the same thing -- most shampoos are fine unless you swallow it...which I probably haven't done since I was 3, so I think I'm okay but thanks

Most of my stuff has nothing alarming in the ingredients, but yes I'd stay away from the all-natural hair products, obvisouly. Thanks for ur advice though!

[ashylu929]

Personally I think you have to be realistic about these things. I only worry about the things I can realistically control such as crumbs of bread/flour or pasta contaminating my food. I live alone so there is no possibility of this at home. When I am eating out I use dscretion to decide whether I am likely to be safe - for example, although a local pizza joint does gluten-free pizza, they are cooked in the same oven as all the other pizzas - so I won't eat them, there is obviously a very real risk of CC.

None of the expert sources I have consulted have advised that you need to worry about teflon pans, chopping boards etc. As long as they are well washed, there is not an issue. The handbook given to me by the Coeliac Society here in Victoria Australia even advises about how to wipe down/shake down your toaster to dislodge regular bread crumbs, then make your gluten-free toast in there.

The example given in one post saying: "If your dog eats gluten and then licks himself and then you touch his fur and later forget and put your hand in your mouth (eating)." - well I would not consider this a real risk. If you pet your animal and then don't immediately wash your hands after, you are asking to get sick anyway, this is just basic hygiene.

Be real people.

OMG thank you -- it is nice to see the phrase "be real people" -- and to find someone who agrees with me. That's what I've been thinking all along. Cross contamination, I understand. Lipstick/lipgloss I understand...even toothpaste. But the shampoo/beauty product thing and dog thing? Come on! I agree, no "official" source has said anything to the effect that that stuff is true, same goes w/ the kissing thing.....but that being said I DO live by the mantra " to each his own" -- so it avoiding those things is helping some people, then good for them. I'm not going to live my whole life catering to the gluten-monster. I think a restricted diet and vigilant lifestyle is good enough. I hope my system never is so sensitive that I have to worry about my doc licking me or getting my hair done at the salon.

One thing I WOULD like to share is that I found out what may have been "glutening" me....a supplement I was taking, whose website said (under FAQ's) that ALL of their products are gluten-free. I checked right after I ordered and got diagnosed. Now, conveniently, that claim has been taken off the site!

[ksymonds84]

i've kept most of my pans EXCEPT scratched teflon, anything wooden, and got my own coliander. Those things are very hard to simply clean. I bought my own toaster because toasters are inexpensive and why run a slight risk, but I don't worry about my dogs. I have an allergy to them and washing my hands after playing with them etc is a must for me. As far as hair products, wheat one's make me itchy but I do have skin rash problems (ezcema and rosacea) and those with the HD have problems with it as well. When I go to a hairdresser I always come home and rewash anyway because I usually don't like the style they give me (last time I came home looking like Carol Brady and my husband laughed all evening over it! ) and they usually put too much styling gel ect in it. Yes, some go to alot of extremes to avoid all traces of gluten and there's nothing wrong with that (they've usually been sick a long time and will do anything to be better, plus some will react severly to the slightest crumb). Welcome to the board!

[aliciatakescare]

I have been "glutened" a few times by cross contamination in the kitchen, but have not had any issues ith my makeup, shampoo, etc. I use Pantene. I also use Aveeno bath products without issue. I had severe migraines all my life until going gluten free. I also suffered brain fog, sensitivity to light, lethargy, fatigue, tingling and numbness, ringing in my ears, sciatica as well as the severe GI issues. Since going gluten free, most of those symptoms have resolved as long as i do not have a gluten attack. As for eating out, I don't eat out. Each time I have tried, I have been plagued with severe gluten attacks so I no longer do so.

[Tallforagirl]

Having said that about the toaster cleaning advice, I have put away my old toaster, and would not take that risk if sharing with a gluten-eater.

I just think you do what you can, but you can only control so much. It's a balance between looking after your health as a Celiac, while maintaining a normal life as a person.

[ashylu929]

Having said that about the toaster cleaning advice, I have put away my old toaster, and would not take that risk if sharing with a gluten-eater.

I just think you do what you can, but you can only control so much. It's a balance between looking after your health as a Celiac, while maintaining a normal life as a person.

Yeah, that's one thing I've def done -- got my OWN toaster

Why risk it, ya know??

ALSO --- does anyone know if PREDNISONE is gluten-free? A steroid? I take it on occasion for Arthritis flare-up and the Walgreen's pharmacy said they believe it contains gluten but I've found many websites of manufacturers, etc. that say otherwise! So foncufsed!!

[aliciatakescare]

Thank you! I too think we need to be realistic & do what we can. I have 2 dogs, a cat and a turtle--all of which i wash my hands after being in contact with them, their toys or their food. I appreciate the advice about the toasdter as i just cannot afford a separate one right now as well as the info about teflon pans---what about glass/bare metal pans?

thanks,

alicia

Yeah, that's one thing I've def done -- got my OWN toaster

Why risk it, ya know??

ALSO --- does anyone know if PREDNISONE is gluten-free? A steroid? I take it on occasion for Arthritis flare-up and the Walgreen's pharmacy said they believe it contains gluten but I've found many websites of manufacturers, etc. that say otherwise! So foncufsed!!

[kbtoyssni]

The example given in one post saying: "If your dog eats gluten and then licks himself and then you touch his fur and later forget and put your hand in your mouth (eating)." - well I would not consider this a real risk. If you pet your animal and then don't immediately wash your hands after, you are asking to get sick anyway, this is just basic hygiene.

I did find that when I had a guinea pig (who ate gluten food pellets), my eyes would get so, so itchy every time I played with her, I'm assuming from the gluten dust in her cage and fur (regular dust does not bother me). Itchy eyes is one of my gluten symptoms.

As far as catering to the gluten-monster, I use gluten-free personal care products so I don't have to cater to the gluten-monster. There is no gluten in my home and I never worry about CC. I'd have to be more vigilant if I did allow gluten products in my house and I don't want that worry in my life. For me, life is much less stressful when I don't use gluten products, and it's like the celiac doesn't even exist at home. But it is a very personal decision.