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FrumpyWife

Feeling Overwhelmed And Hopeless

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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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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Hi,  The anemia was most likely caused by celiac disease damage to your gut lining (villi).  The damage caused by celiac disease affects absorption of nutrients including vitamins and minerals.  So your body will begin to decline as it won't be able to properly function without adequate amounts of many vitamins and minerals. Also your immune system will begin working overtime to produce antibodies to gluten on a continual basis.  That's a bad thing as a ramped up immune response may develop reactions to other foods you eat.  I can't eat dairy, nightshades, soy, carrots, celery, and other foods.  All these other food intolerances most likely developed because my gut was irritated and inflamed from eating gluten for years and not knowing I had celiac disease. The forum software used to have a signature footer that showed up under posts.  Many members listed their additional food intolerances in the signature footer.  There are a lot of celiacs who had additional food intolerances develop. Since your immune system is going to go crazy trying to "fix" the problem, you can expect your other AI condition symptoms to get worse.  That is not good. Just because it is hard to do doesn't mean you shouldn't do it.  Eating gluten-free does get easier over time if you stick with it.  You can get used to eating different foods and even like them.  There is plenty of naturally gluten-free food out there.  It does take some adjustment and maybe a little adventurous spirit to eat and live gluten-free.  But the payoff is great in health and wellness. If you ate gluten-free for 3 years you can eat gluten-free for 5 years.  And 10 years etc.  You know you can do it because you already did it.
    • The gluten challenge is 12 weeks of eating gluten for the blood antibodies tests and 2 weeks for the endosocpy.  There is also the test for DH (dermatitis herpetiformis) which is a skin biopsy.  DH causes a rash on the body, often in a symmetrical pattern.  The IgA antibodies are deposited in the skin and cause the rash.  They test for DH by taking a small skin sample from next to a lesion, not on a lesion.   Going to a dermatologist who is familiar with celiac disease/ DH could be an option. Check around your area to see if you can find a dermatologist that other people with celiac disease and DH have seen.  Sometimes hospitals have celiac support groups and you might find some doctor recommendations from them. Celiac disease is not easy to diagnose but if you aren't eating gluten it is pretty much impossible to diagnose.  That may change in a few years as there were new tests being talked about that may be able to do diagnosis without a gluten challenge.  But they aren't available yet.  
    • Might be your new regular, if you went to a whole foods diet with plenty of veggies, etc. And less processed crap your getting more fiber. I used to get constipation before going gluten free....yours could be a similar issue but just 2 months is a rather short time. Many times constipation is brought on by magnesium issues, healed gut, etc. can fix this,

      Other thoughts, are you consuming a lot of fruits, juices, taking vitamin C. Frequent bowl movements could also be your getting your upward threshold of vitamin C. You could be getting more fiber then your used to.

      Or you could be getting a light gluten exposure from a condiment jar/butter tub with crumbs, or a pan with scratches you did not throw out. Ate outside your own house? Do check the newbie 101 thread to see if you missed anything.

      Any other information you can tell us? Like what you eat, Do you see pieces of undigested food? This could be a enzyme issue or a gut biome issue.
       
    • Sure.  That could be normal for you.  2 months isn't that long to heal and get everything regulated.   It may be different 2 months from now.
    • I have been recently diagnosed with Celiac's Disease.  I have changed my diet for the last 2 months.  I am finding that I have to go to the bathroom about 3 or 4 times in the morning.  It is not diarrhea. I used to go once a day. Is this normal?
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