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SabineHP

So disgusted! (With myself and Celiac)

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While traveling out of state,  I managed (once again) to get glutenized (is this a word?)

Back home and in crippling migraine pain, I took migraine pills in hopes for relief. It turned out that Advil Migraine pills contain gluten and needless to say, I am now in worse shape. The joint and body pains, headache, neck, shoulders, back, it all hurts. Painful bloating (picture 9 months pregnant), brain fog to a point that my head feels like it's under water. I can't follow the simplest conversation A. due to hearing impairment from gluten (anyone else familiar with this?) and B. my level of comprehension has drastically declined (anyone else experience this?)

I was diagnosed almost three years ago and I am so disgusted with myself for continuing to get accidental gluten exposure!!! I need advice, a system, something... I don't know how to get this under control😫 

Also, I am seeing and reading more studies that are suspecting correlation between Celiac and dementia. This is scary to me, as it runs in family on maternal side and the fact that I went undiagnosed for nearly 30 years. 

What do YOU do to manage Celiac, control it and keep exposures at bay?

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Hi Sabine,

I live with gluten eaters and and do fine being gluten-free.   I mostly eat at home and prepare my own food.  I keep silverware and pots and pans of my own separate.  I also have a mini refrig that I keep my food in.  I rinse dishes before using them.

I seldom eat out but when I do I go to places like Texas Roadhouse or Ruby Tuesday.  But we are talking maybe a few times a year.

 I eat mostly meats, veggies, fruits, eggs and nuts.  I do eat some gluten-free bread but mostly eat Aldi gluten-free wraps.  If I eat cereal it is mostly chocolate Chex.  I eat it dry.

I also avoid the other foods that cause me problems like oats, nightshades, dairy, soy, grapes, carrots, celery, strawberries, caffeine, etc.

I use stevia in tea instead of sugar.

It seems to me that people often have GI symptoms for a year or two after going gluten-free.  I keep Pepto Bismol and peppermint Altoids around.  I have some DPV4 also.

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All your symptoms after a gluten exposure?  Very common.  

When traveling, I bring my own food or purchase food when I arrive.  I use a variety of coolers and stay in a hotel that can provide a frig.  We camp and use an RV too.  When out of the country, I bring international gluten-free language cards that can be found through a quick google search.  Even then, I hit the grocery store/market for most of my food.  

If we eat at a restaurant, I search ahead of time for a celiac safe restaurant.  I use the “Find Me Gluten Free” app and read the reviews from celiacs:  “Great food. I did not get sick!”  I always talk to the manager or head chef.  I never trust my food server (nothing against them as I was once one myself).  Sometimes, I just  order a drink and eat the shelf-safe food I keep always in my purse.  That way I can still enjoy the company and not get sick!  

Read the Newbie section pinned at the top of the “Coping section” of the forum.  Get a few celiac books and read and reference them a lot.  Keep a list of all the words that contain gluten (paper or phone) to help you check labels.  But for now, your best defense is Whole Foods and avoid most processed foods. If you can not understand the ingredient list then do not buy it until you master the gluten list.  For example, you can not go wrong with a banana.  I have only been glutened by others who have prepared food for me.  I will not even let my mother prepare food for me unless I am watching her.  Why?  Because she does not have to think about this diet and she could easily make mistakes.  

Prepare for when you do get sick.  I keep stews and soups frozen in my freezer which are handy to have those first horrid days.  I also research all OTC medications and mark them gluten-free before I get sick.  You can not think when you are ill.  

Dementia?  Research is indicating that it may be our sugar filled American diet.  Some call it Type 3 diabetes.  This video discusses this possible theory.  As you know, diabetes and obesity is a huge problem.  I happen to be a thin diabetic.  It runs in my family and yes, I ate the Standard American diet for 50 years!  

https://m.youtube.com/watch?v=f-A2rIA2OTE

First, master the gluten-free diet.  Then worry about the dementia that runs in your family.  Rest.  I hope your recovery is speedy!  

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17 hours ago, SabineHP said:

While traveling out of state,  I managed (once again) to get glutenized (is this a word?)

Back home and in crippling migraine pain, I took migraine pills in hopes for relief. It turned out that Advil Migraine pills contain gluten and needless to say, I am now in worse shape. The joint and body pains, headache, neck, shoulders, back, it all hurts. Painful bloating (picture 9 months pregnant), brain fog to a point that my head feels like it's under water. I can't follow the simplest conversation A. due to hearing impairment from gluten (anyone else familiar with this?) and B. my level of comprehension has drastically declined (anyone else experience this?)

I was diagnosed almost three years ago and I am so disgusted with myself for continuing to get accidental gluten exposure!!! I need advice, a system, something... I don't know how to get this under control😫 

Also, I am seeing and reading more studies that are suspecting correlation between Celiac and dementia. This is scary to me, as it runs in family on maternal side and the fact that I went undiagnosed for nearly 30 years. 

What do YOU do to manage Celiac, control it and keep exposures at bay?

Sabine, 

I have suffered from the brain fog and hearing loss when glutenized.  It is very scary to have one's cognitive powers decline into dementia.  I found mine was related to Vitamin B12 deficiency.  

Celiac Disease can impair absorption of vitamin B12.  If one is already low in B12 and gets glutenized, the problem can be exasperated.  You may want to check with your doctor to have your B12 levels checked.  

Here's an article that explains more about B12 deficiency and dementia.

https://www.verywellhealth.com/is-it-alzheimers-disease-or-vitamin-b12-deficiency-98738

Hope this helps!

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I enjoy listening to Ted Talks.  I found this one on dementia.  The take?  No success in developing drugs to stop dementia, so they are looking for ways to prevent it through diet!  Food can heal!  

https://m.youtube.com/watch?v=f0WCb23KPEw

Interesting!  

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25 minutes ago, cyclinglady said:

I enjoy listening to Ted Talks.  I found this one on dementia.  The take?  No success in developing drugs to stop dementia, so they are looking for ways to prevent it through diet!  Food can heal!  

https://m.youtube.com/watch?v=f0WCb23KPEw

Interesting!  

Rumor has it there are some very promising treatments coming up soon.  Unfortunately, it will take years to work it’s way thru the US drug testing/ verification process.  

 

And of of course it depends on why you have dementia.

Edited by kareng

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Hello SabineHP,

Sorry you are not feeling your best.  The advice you got so far in this thread is very good. Personally I do think that preparation is sometimes a challenge, but you can always watch a funny show or listen to good music while preparing your food. I have less food stress now because I always have 2 or 3 meals ready for spontaneous events. Eating whole foods as much as possible frees you from the burden of reading labels. I am finally getting around to getting meds together so I don’t have to worry I am not a pill person, but I think it is good to have them at the ready in case of emergency. I am someone who loves being spontaneous, Celiac tought me that the more prepared I am, the more spontaneous I can be. I’m not even that organised, but if I have 5 minutes here and there I do foof prep for later, I always have some cut up veggies to munch on or to throw in a recipe. Try finding ways of having fun with it and know that you are doing your best. 

 

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