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Feeling Overwhelmed And Hopeless


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#1 FrumpyWife

 
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Posted 26 January 2013 - 01:11 PM

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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#2 kareng

 
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Posted 26 January 2013 - 01:58 PM

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:


http://www.celiac.co...es/#entry623885

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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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#3 kareng

 
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Posted 26 January 2013 - 02:07 PM

Also:

http://crockpot365.blogspot.com/?m=1


All gluten-free and most everything has normal ingredients.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#4 FrumpyWife

 
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Posted 26 January 2013 - 02:10 PM

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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#5 kareng

 
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Posted 26 January 2013 - 02:14 PM

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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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#6 mushroom

 
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Posted 26 January 2013 - 02:19 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#7 mushroom

 
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Posted 26 January 2013 - 02:28 PM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 FrumpyWife

 
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Posted 26 January 2013 - 02:33 PM

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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#9 shadowicewolf

 
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Posted 26 January 2013 - 02:42 PM

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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#10 mushroom

 
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Posted 26 January 2013 - 02:57 PM

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 :)
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 kareng

 
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Posted 26 January 2013 - 02:57 PM

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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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#12 FrumpyWife

 
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Posted 26 January 2013 - 03:08 PM

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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#13 bartfull

 
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Posted 26 January 2013 - 05:27 PM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 mushroom

 
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Posted 26 January 2013 - 05:58 PM

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.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#15 Celiac Mindwarp

 
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Posted 28 January 2013 - 12:32 AM

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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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image




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