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No Fair!


luvs2eat

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luvs2eat Collaborator

No more wheat, rye, barley, and sometimes oats was rough, but I've done it for 10 years. It's a no brainer. If I can't cook it myself, I don't eat it. It really wasn't that hard.

Years later, it became pretty obvious that dairy doesn't like me much anymore. That's been MUCH harder. You can't recreate cheese and butter. I avoid it as much as possible, but do eat it sometimes.

Now, I can no longer deny that alcohol doesn't like me anymore either. Now I'm starting to feel sorry myself. This is not fair!!

Yea, I know... but I can't even have cheese with my whine!!


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sahm-i-am Apprentice

Oh My Word! I am so sorry!! I've been gluten-free for 1 1/2 years now and finally adjusted.

Yeah - it isn't fair. I mean, why after 10 years is this just now showing up???? God, that is scary and frustrating. For 10 years you have been

faithful and diligent and NOW you get other issues? What the heck??? I am soooooo sorry! I can't offer advice but I can give a cyber hug.

On a brighter note - Enjoy Life makes dairy free chocolate! :)

Feel for you,

Wendi

bigbird16 Apprentice

Ugh. I know the feeling of finding one more thing. Last week I realized sorghum is off my safe list. That means no more Bard's Tale beer (or any other gluten-free beer). May I suggest as a decadent treat, a wheel of Dr. Cow aged cashew nut cheese? On your favorite rice crackers (or as plain wedges) it tastes like the honest to goodness memory of cheese. It has tang and bite like cheddar. It spreads. It contains only nuts, salt, and acidopholus. It's expensive, but sometimes one just plain deserves it. Go get you some cheese for your whine! :)

Poppi Enthusiast

That sucks. I would have myself a serious cry if my body started rejecting dairy.

I can't drink coffee. I feel glutened for 3-4 hours if I do. I have honestly found going without coffee almost as hard as being gluten free. Obviously it's easy to avoid but I don't drink alcohol so coffee was my social drink (not to mention my delicious way to wake up in the morning).

AVR1962 Collaborator

Have you tried aged cheese? Or lactose enzymes? Dairy was my hard one too, subs just do not work as they have too much other stuff in them that I react to. I hear you with the alcohol. I have had to stay away from it myself and I used to dearly love cooking dinner, munching on some wonderful cheese while sipping on wine. I have had to limit myself one glass twice a week! You'd think I'd lose weight with all I have cut out of my diet, hum??

Leper Messiah Apprentice

I agree this completely limits your options - I have to avoid dairy, soy, gluten obviously and bloody corn too which is even worse than dairy at limiting your food options as almost all gluten free foods contain at least some 'maize' or other corn derivative and that includes multivitamins. So in essence, I empathise entirely!!

Just out of interest how did you determine dairy was problematic? What are your symptoms?

Alcohol will generally be bad to all persons due to the fact it is a mild diuretic, gets into every cell of your body and let's not beat about the bush here...a poison, however mild or tolerated. I would expect you to cope with this relatively mild stress unless you are in the middle of a gluten reaction, where your body - specifically your adrenal glands - are having to deal with all the inflammation caused by your reaction. On top of other things, such as stress generally in your life, your adrenals may be struggling to keep up.

I can't drink any alcohol in the 2 weeks of my reaction, after-which my resistance goes back to a level I would consider normal. I know you say you've been gluten-free for 10 years, and have a lot more experience than me, but I thought it might be helpful to add.

Another thought could be leaky gut, but after 10 years of being gluten-free I think this is doubtful. I would hypothesise that most leaky gut is caused by the reaction to gluten and for any other chronic inflammatory stomach/gut/bowel diseases.

mommida Enthusiast

It is hard with more restrictions, but you can do this.

First try probiotics to make sure you gut is as healthy as possible. (I think alcohol and cheese are harder on your gut when there is a yeast overgrowth.)

If these foods are really out it is time to concentrate on what you can have. Hummus can have "creamy" cheese texture, and a good source of protein. I really love The Allergen-Free Baker's Handbook, by Cybele Pascal.


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Skylark Collaborator

There was a poster here a while back who figured out a gluten-free diet can be low in molybdenum (grains are a major source), which is needed to metabolize alcohol properly. He started on a trace mineral supplement and recovered better alcohol tolerance. Maybe it will help you. B)

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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