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Feeling Overwhelmed And Hopeless
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21 posts in this topic

i am going to sound shallow and horrible.. and i guess i will have to put my hands up to both those things, i am hoping that maybe some other "spouse of" can put this into perspective for me...

My husband is currently undergoing testing for specifically celiacs or crohn's disease.. in the past he has drunk A LOT (to the point where it could be classed as alcoholism).. since testing started, he has stopped drinking. He shows most of the symptoms.. i have been reading for the last week and it is all overwhelming me. I dont think he realises the extent this whole thing will take..

I am terrified of how to cope with "a celiac".. i cannot afford to put our entire family on gluten free foods, we have 2 autisitc teenage boys who eat like horses and a daughter.. we have very limited resources and i was sick to my stomach today when i bought some speciality foods for my husband. He has been doing better since cutting out gluten, so to me that is another indicator that he in fact does have celiac as supposed to crohn's. I cannot afford to buy all the special foods for him on a regular basis, my money just wont stretch that far.

i have deep cleaned and sterilized a cupboard for him and am trying to buy him cheap utensils etc... but even with a big sign on the cupboard, saying do not touch, the boys were attracted to that like bees to honey and i had to start all over.

i just dont know how to manage to keep our stuff separate.. at first i thought, well ill just cook separate meals for him, but it seems way more complicated than that... i LOVE baking, i guess that will have to stop.. i already miss being able to just be spontaneous and giving him a kiss on my way out the door and the thought of having to decontaminate myself before we could do the whole married couple thing turns me right off that thought...

i cant see us ever being able to lead a normal life and i cannot get my head around that .. i know a lot of people here will flame me and come up with the "you want to split up over FOOD" line, but really it is so much more than just food.. the food i could cope with, but having to worry about having sat on crumbs or touched something..

right now the only way i can see to keep him healthy is for him to move out.. money is scarce, so i cannot afford to keep him in all those special gluten free foods, i cannot afford to just go and buy him a new toaster and a separate fridge.. and how can you have a family life when one member is segregated totally and cant even eat with the rest of us??

it just all seems very hopeless at the moment...

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Why does everything you make have to have gluten in it? Before I had to be gluten-free, many things I made were gluten-free naturally. Chili, nachos, tacos ( check and get the seasoning packet with out the wheat), chicken and rice soup, salad, baked potatoes, green beans, carrot sticks, applesauce, steak, Chex cereal, eggs, cheese, etc.

Also, gluten free helps a lot of autistic kids, too. He shouldn't go gluten free until his testing is finished. If he tests positive for Celiac, you will need to get the kids tested.

I am the only Celiac in our house. We eat most things together & gluten-free without buying a lot of odd stuff.

Here are a couple of cookie recipes that are gluten-free and don't need anything odd or expensive.

Emeril’s Peanut Butter Cookies

Ingredients

· 1 cup creamy peanut butter

· 1/2 cup granulated sugar

· 1/2 cup packed light brown sugar

· 1/2 cup semisweet chocolate chips

· 1 large egg, beaten

· 1 teaspoon vanilla extract

· Cooking Directions

Prep time: 5 minutes

Cook time: 10 minutes

Total: 15 minutes

1. Position two oven racks in the center of the oven and preheat the oven to 350°F.

2. Combine all the ingredients in a bowl, and stir with a wooden spoon until smooth.

3. Divide the dough into 24 portions, about 1 heaping tablespoon each. Roll each portion between your hands to form a smooth ball. Place the balls of dough on ungreased cookie sheets, spacing them 1 inch apart. You should get about 12 cookies per sheet. Using

a fork, press on the dough in two directions to form a crosshatch pattern.

4. Bake the cookies, rotating the sheets between oven racks and turning them back to front midway, until the cookies are puffed and lightly golden, about 10 minutes. Remove the baking sheets from the oven and let the cookies cool on the sheets. Then remove them with a metal spatula.

Makes about 24 cookies

Or:

I found it takes 2 cups of powdered sugar for the above link. Also, you can use any its, chocolate chips, etc. I used broken candy canes at Xmas.

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thank you for your reply.. i guess i should have mentioned that they are not his biological kids so no worries there.. and although i know that a lot of people swear by the diets for autistic children, it it not something i prescribe to. We saw a dietician with both the boys as they are naturally fussy eaters, unfortunately, the only foods ds2 will eat are a certain breakfast cereal, pizza and bread... thats a whole different struggle to be having though.

im already cooking three separate dinners at night, so adding yet another in a sterile kitchen is just getting too much..

my husband has had his bloodwork and endoscopy, they are now "only" following up with a colonoscopy to rule out crohn's...

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I had another thought.....how much did he used to spend on drinking? $15 a week? Thats loaf of pre- made gluten-free bread and a lot of gluten-free pasta, enough so you only have to make one kind of pasta. Let hub fix his own food for a while? Until you get it under better control?

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A celiac diagnosis in the family can be totally overwhelming at first, I give you that. But at some point you have to stop and take a big breath and say, not that this is not going to work, but "How am I going to make this work?" (I see that Karen has added a response so I will revise a little what I was going to say.

The first thing that jumped out of your post is that you have two teenage autistic boys. Gluten is believed to play a large role in autism by many. If your husband tests positive you should definitely test your boys (and your daughter, too), but even if they test negative a gluten free diet would probably be quite beneficial to them too. So instead of isolating your husband, join him. It need not be expensive although it will require a bit more cooking. But since you love to bake, learning gluten free baking should be a breeze and the home-made is better than the bought gluten free because it does not have all lthat junk added to it.

It is wrong to think that the gluten free diet involves running out and buying every box marked gluten free on the supermarket shelf. In fact, what you would probably do is avoid almost everything in boxes marked gluten free -- which means avoiding almost all food in boxes. It is much cheaper to buy the whole foods than to pay a processor to process the foods, put them in boxes and label them. To start with the only processed foods I would recommend you purchase is rice (which you undoubtedly already have), Tinkyada pasta, Udi's bread, and a bag of Pamela's baking mix. Armed with these items you can shop the perimeter of the store and buy the fresh foods that are on special, the chicken legs, ears of corn (okay, it's winter now so the produce will be a bit of a problem and I will make the exception of going to the freezer case and buying frozen vegetables -- but you will have to read the labels to make sure they haven't added a sauce with gluten or some such thing). At any rate, if money is tight I am sure you are a canny shopper ;)

If you don't have one already, get a big crockpot, ideal for winter meals for a busy mom. Toss everything in in the morning and presto, dinner is ready when you are. Thicken with cornstarch or rice flour for gravy.

If you approach it with a can-do attitude, rather than a can't-do, it does become a lot easier. You think about the foods you can have rather than the things you can't, and pretty soon you stop thinking about the things you can't. :)

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thank you for your reply.. i guess i should have mentioned that they are not his biological kids so no worries there.. and although i know that a lot of people swear by the diets for autistic children, it it not something i prescribe to. We saw a dietician with both the boys as they are naturally fussy eaters, unfortunately, the only foods ds2 will eat are a certain breakfast cereal, pizza and bread... thats a whole different struggle to be having though.

im already cooking three separate dinners at night, so adding yet another in a sterile kitchen is just getting too much..

my husband has had his bloodwork and endoscopy, they are now "only" following up with a colonoscopy to rule out crohn's...

Okay, I see that you will probably have to buy some Chebe pizza crust mix (the easiest to start with) to make pizzas for ds2 and you will have to wean him onto some other cereal and bread. Eating gluten free is not a punishment, is not at all unhealthy, and in fact can be healthier than the SAD (standard American diet) which IS often rather sad.) You definitely should not be cooking three separate dinners. But if you can manage to keep gluten out of your house and let those who are not intolerant of it eat it only outside the house, life suddenly becomes a whole heckuva lot easier and more enjoyable.

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the thing that is freaking me out totally is the fact that it doesnt stop at the food... it goes on into everyday life, such as a harmless kiss goodbye, the kids leaving crumbs somewhere.. it is apparently not just a case of keeping a section of the kitchen for him, with his own, personal utensils/pans/pots/toaster/mwave and small fridge etc. (yes, i read the list ;) )

what happens when the dog bounces and licks his face? what happens if the kids accidentally touch his cupboard and then dont tell anyone.. it is going to be hard going to drive these changes into autistic teens brains. DS1 will be easier as he is a stickler for rules, but ds2 is just a bundle of energy who genuinely forgets. my anxiety levels with this whole cross contamination level is going through the roof.

we are also in the uk, so gluten-free stuff isnt as widely available.. i bought a 400g loaf of bread for my husband which cost £2.95 i then had to go and buy the cheapest 50p loaf for the kids and myself...

thank you for the recipes and the links, i guess im just tired and overwhelmed... and yes, there are other issues in this marriage and i guess if all were well, i would have a different outlook or try harder :(

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There are a lot of things that can be made that are already gluten free (just thought i'd echo it). Being gluten-free isn't that bad at all, it just takes some time to learn how to do so.

I spend less on my gluten-free stuff then i ever did when i was on a gluten diet. You do not need specialty items. For example, i use white corn tortillas for samwiches. Thats what.... $3 if that for 30 tortillas? And they freeze well too.

I make a good coffee cake like goodie out of betty crockers gluten free yellow mix, some rice flour, an apple, and some brownsugar. I spend... maaaybe $6 on the whole thing and it makes more then the prepackaged goodies.

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i guess im just tired and overwhelmed... and yes, there are other issues in this marriage and i guess if all were well, i would have a different outlook or try harder :(

Okay, so I guess the question we should be asking here is, are you committed enough to this marriage to want to make it work? Because if the answer to that is no, you are going to be dragging your feet every step of the way. :(

Once you have that question answered we can talk more about how you can do it :)

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He doesn't need his own fridge or his own pans. Just stuff that can't be cleaned well like a colander or a toaster. He shouldn't put out food on a counter. He should always use a plate or bowl so no crumbs that might be on the table or counter get on his cookies. He needs to take some responsibility for his own safety, too.

. Maybe you could get some red tape or some color and put that on things no one is allowed to touch without help from a parent. Red on his tub of butter. Red on the package of cheese. Red on the milk jug. You can help them get milk or a slice of cheese?

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Okay, so I guess the question we should be asking here is, are you committed enough to this marriage to want to make it work? Because if the answer to that is no, you are going to be dragging your feet every step of the way.

i guess you are right... at the moment i just dont think i can do it... or change the kids and my lives to that extent it just sounds way too scary and complicated... and i seem to have reached my post limits :) so if i dont answer you, im not being rude i just have to do it tomorrow..

thank you to all of you who replied. .. if any of you know of a forum where it is actually the "carers" who hang out, rather than the "sufferers" i would be interested in that too..

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Frumpy, if you could stick with him while he was drinking you must have thought your marriage was worth it. And now that he has stopped drinking and has shown a committment to stopping, things will get better. AND, celiac disease probably has contributed to any "personality traits" that may have been making things hard. If you've read much here you probably already know that mood swings, foggy thinking, anxiety, and yes, anger issues are all a part of the symptoms.

Honey, I know what I am talking about. I used to be quite a heavy drinker. It was taking over my life at one time. I was angry at the world and VERY hard to get along with. I went from being depressed to being angry to being silly happy in rotation, several times every day.

I stopped drinking with the help of God, then I found out I have celiac. Since I have been gluten-free my whole personality has changed. I no longer get depressed, and my temper is under control now. Of course I still have times when I get angry, but it is always for good reasons, and I don't "act out" my anger. In other words, I'm no different from anyone else. I can honestly say that people LIKE being around me now.

Your husband will go through a period of gluten withdrawal. He will get headaches and become even more foggy headed for a couple of weeks. But if he could get through the alcohol withdrawal he can get through this. When he starts feeling better his energy level will increase, his anger will diminish, he will feel younger and stronger and more alive than he has in years.

As for the kids, you can keep his condiments and gluten-free bread and the like in a locked box in the fridge. Cereals should be easy. Chex are gluten-free. And meats, potatoes,vegetables, rice, even most ice creams are all gluten-free. So you have to brush your teeth after eating and before you kiss him. You should be doing that anyway, right?

Of course I don't know either of you and no one knows what goes on inside a marriage except the two people involved, but I would ask you to take a deep breath, and give it some time before you make any decisions. You might just find that this seemingly terrible thing is the best thing that ever happened.

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thank you to all of you who replied. .. if any of you know of a forum where it is actually the "carers" who hang out, rather than the "sufferers" i would be interested in that too..

The section in which you posted is where the carers hang out.

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Hi

I am in the UK, so maybe I can give you a few starters here.

First of all though, it looks like this has brought up all sorts of marraige issues. I guess you have to do something there too. If he has only recently stopped drinking, there are probably a whole host of things going on for you and him. Maybe you can get some support for this side of things. We have alchoholics anonymous for the alchoholic, and Al Anon for family members. My understanding is that just because someone is not drinking doesn't mean they are not an alcoholic. Only you know whether the marriage is worth fighting for. It is worth knowing that if he is diagnosed with celiac disease, it may have been affecting his behaviour. That said, there is a lot to say that nothing excuses alcoholic behaviour.

Right, got that bit out of the way.

There is a huge range of gluten-free food available in the UK, once you work out where to find it, and even more 'naturally' gluten free food. The big supermarkets all carry a good range, and it is starting to be more widely available (for example my local co-op now has a good range). From what I saw he does not have a full celiac diagnosis yet. If he does end up with a biopsy diagnosis, in most places he will be entitiled to gluten-free foods on prescription. It varies how much that is, but is often about 14 'units' a month - a small loaf is about 1 unit. It is usually basics like bread, pizza bases, pasta and you would probably want to get a prepayment certificate.

I have had a lot of success with the Doves Farm range of foods. Watch out, they do gluten stuff too, don't get mixed up! You said you like baking - my husband is our baker, and we no longer have gluten flour in the house. He uses their self raising and plain flours in direct substitution in recipies. There is sometimes a tiny adjustment to the moisture that needs to be added, and xanthan gum is useful for pastry to help it stick (if your husband can tollerate it). No one realises the cakes etc, he bakes are gluten-free, and he is very popular at work! He even made gluten-free eclairs using their flour.

I like their brown rice pasta too, and they do one with a corn mixture.

There are some reasonably decent breads available. Warburtons seems popular.

I don't eat any of the breads, and have got in the habit of making up picnic boxes instead of sandwiches, either salads with cooked meats etc (not all blikes will go for that!!) or leftovers from tea the day before, stews, soups for lunches.

Celiac Uk do a directory of gluten-free foods, which covers the main supermarkets and lots of the caterering suppliers used here. Most of the things in there are from their 'normal' ranges, so not more expensive. For example, you can find out where you can get standard rice cripies or corn flakes which are gluten-free.

We do as much 'naturally' gluten-free cooking as we can, for example with rice (different kinds), potatoes, sweet potatoes, butternut squash etc. This keeps the cost and cooking down (I have various food intolerances and my son has allergies and intolerances, so I get the frustration of cooking 3 different meals, grrrr). We eat a lot more fresh veg than we did.

On whether to do gluten-free for your sons - maybe in future, but it sounds like unless you find lots of cross contamination happening, that might be something to consider for later (I know others might not agree with me on this, but that is where I am on it. I might try in another few months with my kids.)

I do about two thirds of my shopping in Lidl, and top up on stuff I can't get there elsewhere. Their fruit and veg is good, and regular bread, wraps etc are cheaper and fine.

We are a mixed household here, partly because of the money, partly 2 picky eaters, partly habit and I suspect my 2 small children present a similar problem to your lads. I did get glutened a lot at first, but 5 months in, we seem to be doing much better. The 2 things that made a difference were threatening to make everyone go gluten-free if it didn't stop, and buying cheap kitchen roll (God bless Lidl again) to wet and wipe down the small area where gluten is used in the kitchen and the table we eat at immediately after use, and do lots of handwashing. I haven't been glutened in a month now, and before that it was 5 times in 6 weeks. I got a cheap toaster in Argos. Ikea do cheap utensils if you have one handy (and can resisit coming home with loads of other stuff you didn't go in for...)

This is the place for partners etc to come. From what I have seen, partners tend to come here for a few weeks while they make the transition, then just pop in occassionally for the odd question. I think this means that they get more comfortable with the whole thing. There is a parents thread too, you might find some company of others making the transition there. And of course all the other threads for those of us blessed with celiac or other gluten related condition.

It is totally overwhelming to start, but hang in there.

Come and ask questions, rant etc. Most of us have stood screaming in the supermarket isles at some point :)

Good luck with it all. Remember to look after yourself, families need Mums

Mw

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Oh, and James Welbeloved do gluten-free pet foods. We found it as cheap as what we were using before! From pet shops, and their customer care line is very helpful! Our cat has a new lease of life since we switched her on to it.

If he hasn't finished testing, he should stillbe eating gluten, for both blood tests and biopsy. Your doctor should know this, but mine didn't.

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As a "spouse of," I just wanted to second the person who pointed out that your life may be about to get A LOT happier...if your husband is a celiac and he stops eating gluten, his personality could change dramatically for the better! So much of the mood swings, anxiety, irritability, etc are caused by the gluten.

I hope you'll also reconsider your position on diet and autism --the jury is really split, but there _is_ significant research showing a high correlation between gluten intolerance and autism, and it's fully possible that your sons could benefit from a gluten-free diet. Having an all gluten-free household is much, much less stressful than trying to keep one person's food safe, too.

Feeling for you and wishing you the best of luck...

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thank you again for all the replies, especially from winwarp and csw :)

putting the boys on a gluten free diet is out of the question, their diet is so very limited as it is, so messing around with those foods they DO eat, would not be a good idea :) we have discussed the varies diet "fads" that surface at length with their paed. psychiatrist in the past and we concluded with him and our dietician, that the benefits are far too anecdotal to put any serious weight on them.

i am still undecided as to how we are going to move forward... personally i feel that it is too much for me to handle, i could not forgive myself if my husband got sick because of my inability to keep his food/environment clean. we will have a few weeks before he gets the results, one of the few drawbacks of the NHS.. everything takes a long time, from initial appointments to getting results.

if we do decide to try carrying on living together, i am sure i will have to be back and figure out what he can and cant come in contact with...

thank you all once again for the replies, encouragement and experiences you have shared with me.

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Glad it was helpful. There are some good folks here, be sure to come by for any advice.

Lots of people use the time testing to get their heads around the new diet. It does all start to sink in after a few weeks.

BTW, I picked up a copy of Living Gluten Free for Dummies in the Works this week for £5.99 instead of £15.99. It is pretty good mostly. Not sure if there is one near you, and their stock is a bit random, but you might be lucky :)

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Just going to throw in my 2 cents here.......

check out grain free dog food. We use Natural Balance for our puppies and don't have to worry about doggy kisses.

Everyone has to work it out for themself but to me separate kitchens just don't work well. Gluen Free cereal is cheap, eggs, potatoes, rice, quinoa, veggies, fruit, cheese all cheap. It's the speciality food that get you and they really aren't that good for you anyway. Throw chicken in the crock pot and it's a cheap meal. So many main stream foods are now gluten free. Sauces and that sort of thing. Learning to read ingredients is exhausting but in time becomes easier. My rule any more is more than four or five ingredients and I don't want it.

No judgements on you, none! I remeber standing in the kitchen sobbing and saying that I was going to pitch a tent in the back yeard and go live out there so I wouldn't be a burden. Dramatic wasn't it?! But that's how I felt. Try, if you can, to get some sleep, take all of this a little at a time. You can't learn and do it all overnight. Someone once told me that one day I would wake up and find that all of this was second nature. I rolled my eyes and thought "Never"! But ....... she was right. Being the resistent and subborn person that I am it took me awhile. :)

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My husband and I can't afford to make separate meals so I understand. In the beginning I was overwhelmed but there are LOTS of things you can buy that are gluten free that aren't special. Use your computer and look at items to make a shopping list. We know Most of the brands of items that are safe to buy. There are lots of cereals that say Gluten Free. Most meats are safe, just make sure you buy meats that don't have sauces etc on them. For instance, canned beef in gravy isn't safe.

If you want to know what kind of hot dog is gluten free, just goggle it, We buy Nathan's brand. Read labels, ask here or google brands that contain no gluten. Fresh Fruits and Veggies are safe, most frozen and canned, just look at the labels. After a few weeks it'll come easy. A lot of gluten free foods are regular foods, I would say bread is the big exception. My husband eats what i eat except for bread, he eats the real thing, I eat Gluten free when I eat bread.

I certainly don't suffer from being denied anything and you can do it on a budget.

We have found that that a lot of prepared packaged foods do contain gluten but it's easy to do things on your own without all the preservatives. If you need a recipe for something just google, gluten free whatever it is and read the reviews on it.

I know what snacks I can eat and what I can't eat. Lays plain Frito's and plain Chips are safe. There are lots of others.

There are some great regular cookies you can make that don't contain flour that we ate before I had to go gluten free.

You can also buy Brown Rice- Rice Krispies now to make Rice Krispy treats and they are gluten free, states it on front of Box. They taste Exactly like the regular Rice Krispys.

Since I live in bed and have a lot of time on my hands, I would be glad to help you with a shopping list of gluten free brands of food if you'll send me a list of items you would need to buy.

Terms That Mean Gluten On Food Labels

The following terms represent the most commonly used Latin terms for wheat, barley and rye. If you see any of these, the product contains gluten:

  • Triticum vulgare (wheat)
  • Triticale (cross between wheat and rye)
  • Hordeum vulgare (barley)
  • Secale cereale (rye)
  • Triticum spelta (spelt, a form of wheat)

Ingredients That Always Contain Gluten

The following terms represent ingredients that always contain gluten:

  • Wheat protein/hydrolyzed wheat protein
  • Wheat starch/hydrolyzed wheat starch
  • Wheat flour/bread flour/bleached flour
  • Bulgur (a form of wheat)
  • Malt (made from barley)
  • Couscous (made from wheat)
  • Farina (made from wheat)
  • Pasta (made from wheat unless otherwise indicated)
  • Seitan (made from wheat gluten and commonly used in vegetarian meals)
  • Wheat or barley grass (will be cross contaminated)
  • Wheat germ oil or extract (will be cross contaminated)

Ingredients That May Contain Gluten

Depending on the source, all of these ingredients potentially can contain gluten. The FDA does require food manufacturers to declare wheat-containing ingredients on their labels. However, other gluten-containing grains potentially could be used to make some of these ingredients.

You'll need to check with the manufacturer to find out for certain whether or not a food that includes one or more of these ingredients is safe on a gluten-free diet.

  • Vegetable protein/hydrolyzed vegetable protein (can come from wheat, corn or soy)
  • Modified starch/modified food starch (can come from several sources, including wheat)
  • Natural flavor/natural flavoring (can come from barley)
  • Artificial flavor/artificial flavoring (can come from barley)
  • Caramel color (now considered a safe ingredient, but if you're in doubt, check with the manufacturer)
  • Modified food starch
  • Hydrolyzed plant protein/HPP
  • Hydrolyzed vegetable protein/HVP
  • Seasonings
  • Flavorings
  • Vegetable starch
  • Dextrin and Maltodextrin (both sometimes made from wheat)

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      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • New to this--first gluttened exp. How to feel better?
      Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.
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