How Strict gluten-free Diet Has To Be?

[dalma]

Hi everyone,

I am new here and have few questions. Thank you very much for taking time to reply.

My gluten sensitivity test came back positive and I am starting diet. My question is how strict diet has to be? Do I need to stop taking medication which are not gluten-free? How about pots and pans, do I need to have all that separate just for me? I am also positive for casein, do I need to be on casein diet for life? I am OK with diet, but I am worrying about all other stuff, do I need to watch out for every product that is not gluten-free?

Do I benefit if avoiding gluten-free foods but not other things like soaps and shampoos...? Thanks!

Fecal Antigliadin IgA 23 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow

[Kaycee]

Welcome Dalma.

Yes you do need to be weary about medication that you are taking. I would advise you not to stop taking your medication until you have seen your doctor, who could advise you on alternatives. Your medication might already be gluten free.

I know it is quite a lot to take on, and it sounds like you have come to terms with gluten free food and that is quite a big hurdle.

As for shampoos and cosmetics, we are all different and have come to our own conclusions whether to use preparations with wheat in them. I would not use any lipsticks with gluten in. But it is a personal choice and the risks are much less than ingesting food. But be aware that our fingers can go in our hair, then inadvertantly in our mouths.

Once again, welcome.

Cathy

[hez]

Welcome! I got rid of some of my non stick cookware that had deep scrathes but kept my stainless pots and pans. Just gave everything in my kitchen a good scrub. I did go through my make up shampoo to make sure they were safe.

Hez

[HawkFire]

Yes. You need to be gluten free, so all gluten counts. (i had to spell this three times to get it right so check the site out!) Kinnikinnick.com has glutenfree and casein free products. All great.

[gfp]

In the end only you can answer that question because being 100% totally gluten-free is really not possible if you intend to live a near normal life. This means that from time to time we all take some risks and get caught out ....

Now from my standpoint how you control those risks is what is most important... and this counts both health wise and your own physchological well being wise... it's all too easy to let the condition (celiac disease) run your life and not the other way around...

One thing I found really hard at first was knowing what the heck I'd done wrong.... I kept getting glutened and not knowing where from or I would just feel generaly crappy and washed out and couldn't identify why or where...

The two big risks I find are either hidden gluten (stuff inside something else not properly labelled) or cross contamination (CC).. the two overlap but thinking in these terms really helps...

From your post you have educated yourself already about major sources... or you are just like me and always had an interest in what went in your mouth... so obviously major sources like bread and pasta products are obvious... its the stuff which you least expect because of its name is the big gotcha for new GFers... Soy sauce in an example, the name indicates its made from Soy but nearly all commercial non-speciality soy sauce is made with 50% wheat (or barley)...

Then when you think ... what else might soy sauce be in ... it can get overwhelming at first... but don't worry you soon get the hang of it... well 99% of the time... I say that because inside each of us (especailly foodies) is a little devil that sits on our shoulders... you see that great rice noodle dish and think hey..rice noodles .. sounds good and then look for wheat etc. and forget completely about the soy sauce etc. We all do it.... I have a rule to check stuff 3x... once when I pick it up... once when I unpack and once before I cook.... a second opinion is also helpful... so I often ask my girlfriend to check and reasonably often she'll catch something...

Anyway .. now the important stuff.... and this is partly practical and partly physchological...

I find having a 100% gluten-free kitchen indispensible... I do try and eat out when I think its safe but there is an everpresent risk...

I have one resto that the owner is a very good friend, he throws the chef out of the kitchen when Im eating to prepare it himself... but last time I got caught out... or he did... its an accident and accidents happen... I know he would have taken as much care as possible... its just impossible to be 100% safe with breadcrumbs and stuff floating about or using a pan or utensils that have been used for gluten stuff....

However .. I have a safe haven... my kitchen where I can be certain everything (with the exception of some stuff of my gluten-free like cookies which are sealed in tupperware AND plastic bags and labelled with a skull and crossbones... (well my best attempt at one)

One thing I noticed is the symptoms come and go in intensity... they slowly dfade away but over several days/weeks... getting less and less and less frequent ... but WHAM I can suddenly get the full set say 2 weeks later from nowhere...

Before I had my kitchen 100% gluten-free these were constantly mixed up with not knowing.. Did I touch something or my gluten-free use something and not wipe it down.. was it something in the dishwasher or shampoo etc. etc. did she use a pan and then I used it ???

You can drive yourself nuts .... start blaming yourself for being careless etc. etc. and it might just be a freak late-symptom...

So I find I have to take control of the illness... not let it control me....

To this end I replaced all my teflon pans.. all my stainless ones are cleaned with oven cleaner and scrubbed with metal scourers and then recleaned etc. and thescourers thrown away after each cycle...

All my wooden utensils were just replaced and anything suspect given away...

This way I can be assured I can control the diet... if it goes wrong (and it can and will) I can retreat to my safe haven... I think this is doubly important because when your suffering the effects (especially after you have been gluten-free) you are at a low and one of two things happens inj my experience.. you eat what's available and can't be bothered preapring from scratch OR you develop paranoia and Ive given myself eating disorders where Ive been scared to eat anything... I associated all food with being ill for a while and its hell to climb out of...

My heartfelt advice, what I wish I did but didn't is to get a 100% gluten-free kitchen.. no compromises ... if you want to keep the pans you can't effectively clean put them in storage ... etc. as you get experienced you will start introducing new things... and each one you will be ready for.. if you do them all together you've no idea which or what caused the glutening... so your set back to scratch..

I hope this all helps, it is what I would do again with 20/20 hindsight.. not what I did and I'm trying to save you what I lost which was 6 months to a year of my life...

[dalma]

In the end only you can answer that question because being 100% totally gluten-free is really not possible if you intend to live a near normal life. This means that from time to time we all take some risks and get caught out ....

Now from my standpoint how you control those risks is what is most important... and this counts both health wise and your own physchological well being wise... it's all too easy to let the condition (celiac disease) run your life and not the other way around...

One thing I found really hard at first was knowing what the heck I'd done wrong.... I kept getting glutened and not knowing where from or I would just feel generaly crappy and washed out and couldn't identify why or where...

The two big risks I find are either hidden gluten (stuff inside something else not properly labelled) or cross contamination (CC).. the two overlap but thinking in these terms really helps...

From your post you have educated yourself already about major sources... or you are just like me and always had an interest in what went in your mouth... so obviously major sources like bread and pasta products are obvious... its the stuff which you least expect because of its name is the big gotcha for new GFers... Soy sauce in an example, the name indicates its made from Soy but nearly all commercial non-speciality soy sauce is made with 50% wheat (or barley)...

Then when you think ... what else might soy sauce be in ... it can get overwhelming at first... but don't worry you soon get the hang of it... well 99% of the time... I say that because inside each of us (especailly foodies) is a little devil that sits on our shoulders... you see that great rice noodle dish and think hey..rice noodles .. sounds good and then look for wheat etc. and forget completely about the soy sauce etc. We all do it.... I have a rule to check stuff 3x... once when I pick it up... once when I unpack and once before I cook.... a second opinion is also helpful... so I often ask my girlfriend to check and reasonably often she'll catch something...

Anyway .. now the important stuff.... and this is partly practical and partly physchological...

I find having a 100% gluten-free kitchen indispensible... I do try and eat out when I think its safe but there is an everpresent risk...

I have one resto that the owner is a very good friend, he throws the chef out of the kitchen when Im eating to prepare it himself... but last time I got caught out... or he did... its an accident and accidents happen... I know he would have taken as much care as possible... its just impossible to be 100% safe with breadcrumbs and stuff floating about or using a pan or utensils that have been used for gluten stuff....

However .. I have a safe haven... my kitchen where I can be certain everything (with the exception of some stuff of my gluten-free like cookies which are sealed in tupperware AND plastic bags and labelled with a skull and crossbones... (well my best attempt at one)

One thing I noticed is the symptoms come and go in intensity... they slowly dfade away but over several days/weeks... getting less and less and less frequent ... but WHAM I can suddenly get the full set say 2 weeks later from nowhere...

Before I had my kitchen 100% gluten-free these were constantly mixed up with not knowing.. Did I touch something or my gluten-free use something and not wipe it down.. was it something in the dishwasher or shampoo etc. etc. did she use a pan and then I used it ???

You can drive yourself nuts .... start blaming yourself for being careless etc. etc. and it might just be a freak late-symptom...

So I find I have to take control of the illness... not let it control me....

To this end I replaced all my teflon pans.. all my stainless ones are cleaned with oven cleaner and scrubbed with metal scourers and then recleaned etc. and thescourers thrown away after each cycle...

All my wooden utensils were just replaced and anything suspect given away...

This way I can be assured I can control the diet... if it goes wrong (and it can and will) I can retreat to my safe haven... I think this is doubly important because when your suffering the effects (especially after you have been gluten-free) you are at a low and one of two things happens inj my experience.. you eat what's available and can't be bothered preapring from scratch OR you develop paranoia and Ive given myself eating disorders where Ive been scared to eat anything... I associated all food with being ill for a while and its hell to climb out of...

My heartfelt advice, what I wish I did but didn't is to get a 100% gluten-free kitchen.. no compromises ... if you want to keep the pans you can't effectively clean put them in storage ... etc. as you get experienced you will start introducing new things... and each one you will be ready for.. if you do them all together you've no idea which or what caused the glutening... so your set back to scratch..

I hope this all helps, it is what I would do again with 20/20 hindsight.. not what I did and I'm trying to save you what I lost which was 6 months to a year of my life...

[dalma]

Thank you all so much. I'll do my best to stay 100% gluten-free but I will need some time to accomplish that. I am only on day three of diet so I am not ready, I need to go pan shopping.

I am concern about my medications though. I take iron daily, Feosol, which has traces of gluten so I have to change it. I also take quarter of klonopin a day which is also not under gluten-free medicine. I have been trying to stop taking it but I developed addiction, I am sure. It's such a small dose but I feel sick if I don't take it. I also have hypothyroidism but my Thyroid meds is compounded, that should be gluten-free.

I'll take all of your advice with appreciation, thanks.

[JennyC]

Day three is really tough. I'm just about to week three with my son. We are adjusting well. We bought a NEW TOASTER. You have to buy one because toaster crumbs are endless. We bought a small selection of pots, pans, cutting boards, baking sheets, and utensils.

We also bought tons of new food. Reading these message boards was extremely helpful in helping me figure out the foods that he could eat. We live by Bob's Red Mill so we went there and bought lots of gluten-free baking ingredients and mixes. Xanthan gum is a big one. Different recipes call for different flours and starches. I'm sure that many must be interchangeable, but for now I want to experiment to find the best ones. There are many cook books and Internet recipe sites that can help with recipe ideas.

Meat can be gluten-free by avoiding gluten spices and marinades. (Some soy sauces do not contain wheat, such as Kroger brand.)

Potato side dishes are fine. Glutino makes good gluten-free gravy or you can make your own using gluten-free flour/corn starch.

gluten-free pasta with marina source (Newman's own has many gluten-free options under their FAQ section on their website.) I also learned it's easy to make your own pasta sauces...really!

There's lots of gluten-free dinner bread recipes, and Kinnikinnick makes good gluten-free products, including dinner rolls.

Corn tortillas

Many potato chips, original Frito's, corn tortilla chips, Cheetos, and Doritos (white cheddar?) chips.

There are lots of gluten-free cereal, including some "normal" cereals such as fruity & cocoa pebbles, Trix?, some brands of corn flakes, and Dora stars cereal, and some Disney cereals, such as Mikey Mouse and Little Einsteins. (Watch for malt-flavoring!)

There are also lots of gluten-free cookies and crackers, some good brands seem to be Glutino, Pamula's, and Kinnikinnick.

I've read that Dove chocolate, many candy bars, and many say that Hershey's in also gluten-free. (Marshmallows are ok too.)

Pamula's baking mixes are pretty good. Dunken Hiens (sp?) frosting is gluten-free.

Kinnikinick white sandwich bread or Ener-G light Tapioca bread.

Some salad dressings are ok. Hidden Valley Ranch MIX is gluten-free.

Overall, Kraft is a trust worthy brand, it'll clearly list gluten indredients.

Above all read the ingredients on every label every time.

I wish you the best. It's hard to get used to, it does get much easier.

[CarlaB]

Dalma, everyone has given you good advice.

If your medicine is not on the gluten-free list, ask your pharmacist to check it out for you. I take a couple medicines not on the list, but they checked out as gluten-free. There are so many medicines that it may not be on the gluten-free list because it just hasn't been checked out.

As far as the casein, I scored 32. I went casein-free for six months, and gluten-free six months before that. I challenged casein at that point. I have no problems with it at all. Enterolab says it's permanent, and it probably is for some, but it wasn't for me.

100% gluten-free is the only way!

[gfp]

Thank you all so much. I'll do my best to stay 100% gluten-free but I will need some time to accomplish that. I am only on day three of diet so I am not ready, I need to go pan shopping.

I am concern about my medications though. I take iron daily, Feosol, which has traces of gluten so I have to change it. I also take quarter of klonopin a day which is also not under gluten-free medicine. I have been trying to stop taking it but I developed addiction, I am sure. It's such a small dose but I feel sick if I don't take it. I also have hypothyroidism but my Thyroid meds is compounded, that should be gluten-free.

I'll take all of your advice with appreciation, thanks.

Dalma, your pharmacist should change the meds for equivalents if they exist... often one brand is gluten-free and another not

Gluten addiction is also real ... and the hard part is if you keep getting glutened... because at first it offsets your hard work and also restarts the addiction....

I can just say it gets easier and easier... knowing this (and I promise it does) you can give it a positive spin and knmow whatever you are going through if you stick to it it gets better.....

There is considerable discussion and disagreement on what is enough gluten, I simply personally take the one that works for me...

and that is to make life as simple as possible in the long term over short term....

If you decide to make judgment calls each time you are just IMHO putting yourself through the same stuff hence I make it a rule that I rarely break not to eat "possibly glutened" stuff... which can mean McDo's fries or for me wheat derived spirits etc.

Depending where you live standards change as to what is considered gluten-free.... My personal opinion is take the simplest which is consider gluten-free means zero... then its pretty clear what your dealing with... it can make it a little harder at first but I honestly beleive long term it works out simpler... I could be proven wrong at some time in the future... I just prefer to stick to the safest possible and be ready to be corrected later

Im the same with oats... I just got no wish to try them... what if they affect my antibodies but don't express themselves in my gut?

I might continue posioning myself for 10 yrs after which a 10 yr study says "Oats can cause neuro or thyroid problems incelaics that don't have any GI symptoms from them... or equally the study might prove the opposite... I just find for my own peace of mind and simplicities sake its easier to divide all food into safe and unsafe.