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Questore

I Have Nearly Every Symptom Of Celiac

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The OP has not been on the Forum since October of 2013.  Always a good idea to check dates of threads.

 

Colleen

 

Perhaps, but old threads have comments that are still very valuable to a newbie like me.

 

I haven't yet been tested, but I have nearly every symptom of Celiac, just in a slightly milder overall way, and my niece was diagnosed as having Celiac Disease last year.

 

I stumbled over this site in my usual quest to find out what else I can be doing to live healthier.  I started drinking a gallon of green juice per day 3 1/2 years ago, and I have improved a lot, but it's all still there...just less so.

 

I have had the following problems:

 

Allergic to Everything & First Asthma Attack 1962

Lactose intolerance since 1964

Anxiety, Depression and Migraines since 1964

Thyroid deficiency since 1971

IBS since 1974 - Inability to keep food down, vomiting continuously until medicated.  Stopped eating anything but hot oatmeal with water only, and Potatoes with the odd slice of American Cheese for flavor.  Slowly added back very plain, low fat meat after 2 years, then after another 2 years, started adding in this and that.  It got to the point where I could take a few bites of something and it would taste fine, and the next bite would cause nausea.

Diarrhea/Constipation problems since 1974

Pre-Diabetic 1988  Began to put on weight that would not come off on a normal diet.  Preferred having weight to starvation and deprivation again, but limted weight to about 25lb's over ideal weight.

Auto Accident 1995 w/broken Neck, PTSD, and Trauma triggered Fibromyalgia - 60% physically disabled, causing increase of all symptoms, and a lot of pain.  Added another 50 lbs due to comfort foods and no activity over 19 years.

Diagnosed Diabetes type 2 in 2011

 

As best I can see is that I have a flaw in my ability to process stress, which then caused other things to go wrong as life simply occurred. Add a lot of bad habits, and I am a mess.

 

My niece had similar anxiety, depression, and fibromyalgia, and intense inability to keep food down before being diagnosed at 35.  Increasing pain got her to the Mayo Clinic.

 

I am waiting a reply from her as to DNA testing and biopsy information.

 

I started juicing heavily 3 1/2 years ago, and have gotten a lot better, but I seem to be stuck now, with my body making no progress.  Achieving the age of 59 doesn't help, but I believe that stress and inappropriate nutrition is the key to most of our diseases these days, and that I can improve if I change what I eat.

 

I don't know that I have sufficient cause to be diagnosed with Celiac, except that I have had an increasing number of symptoms added one by one.  The picture has been clouded for years by no one seeing the overall picture.

 

I am disgusted with the idea of yet another problem to visit doctors over...seeing a doctor 4 times a year is bad enough for the Pain Meds, IBS Meds and Diabetes Checks, which is controlled by diet, and not insulin.

 

Everyone will say, just get tested...but I really would like to avoid that if possible...it's a long way to the doctor (45 miles) and I avoid driving still except for a monthly food run, and then am exhausted, and I live alone...not really anyone to depend on to help me through this.  My friends will help in an emergency, but they have enough problems of their own without mine being added.

All my family live in another State.

 

I am already on Medicare due to being disabled the last 19 years...so, what do you all think?  I don't need the diagnosis to complete my medical coverage, just ideas on how to cope.

 

I have already started throwing out everything with wheat in it...fortunately I still like oatmeal and potatoes! :)

Edited by Questore

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Hi Questore,

 

Welcome to the forum! :)

 

It's ok to go gluten-free before testing, but it may make testing later difficult.  If you did decide to get tested for celiac disease later, you'd have to resume eating gluten and eat it for up to 3 months.  That can be very unpleasant if gluten is a problem for you.  But if you aren't interested in testing, then going gluten-free now is fine.

 

Going gluten-free isn't an instant fix to symptoms for many people though.  So you should plan to stick with it for 6 months to a year and half.  Really a year minimum is best.  It takes time for the immune system to settle down after removing gluten, and for the gut to heal.  That doesn't mean there isn't a possibility of symptoms relief early on, but it varies with  people.  You'll probably get more responses if you post a new thread.

 

Even if you aren't celiac, eating whole foods instead of processed foods may help your body.  You will be avoiding a lot of preservatives, color enhancers, emulsifiers, soy, etc by staying away from processed foods.  Some people have reactions to those things.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Questore, I only realised I had an issue with gluten after I'd removed it from my diet. I wish I'd been tested before then as I'm now facing a long and probably deeply unpleasant gluten challenge. If I were you I'd ask for the blood test before removing it from your diet, but wish you luck whatever you choose :)

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oatmeal and potatoes! :)

 

Welcome, Questore!  Check out our newbie thread and the others linked to you by GFinDC, and you will see that all fresh fruits and vegetables are gluten-free, so you can eat potatoes safely.  Regular oatmeal at the store is gluten contaminated, but certified gluten-free oats are readily available.  I get the big bag of oats from Bobs Red Mill, kept in the freezer, and I make batches of oatmeal to eat for breakfasts.  Remember to not only look out to avoid sources of wheat, but barley, rye, and non gluten-free oats as well.

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Welcome, Questore!  Check out our newbie thread and the others linked to you by GFinDC, and you will see that all fresh fruits and vegetables are gluten-free, so you can eat potatoes safely.  Regular oatmeal at the store is gluten contaminated, but certified gluten-free oats are readily available.  I get the big bag of oats from Bobs Red Mill, kept in the freezer, and I make batches of oatmeal to eat for breakfasts.  Remember to not only look out to avoid sources of wheat, but barley, rye, and non gluten-free oats as well.

 

Thank you, Laura...that helps.  I cleaned out my entire kitchen, and moved everything tainted to a back room for storage for a later giveaway...I have a ton of dried foods in my pantry that I may not ever eat now. :angry:  

 

Do you keep oats in the freezer to avoid mold?  Or the batches of oatmeal in the freezer?

 

 

 

Are you eating gluten free oatmeal? Oats are often contaminated with wheat.

 

Well, Laura just told me only Red Mill, so I am ordering it.   Hopefully, the oats that I have for long term storage are not contaminated, but there is no way tell without trying them after I've been gluten free a while to get an idea.  I may just give them away too, until I have a guaranteed bulk supplier for dry long term storage.

 

Questore, I only realised I had an issue with gluten after I'd removed it from my diet. I wish I'd been tested before then as I'm now facing a long and probably deeply unpleasant gluten challenge. If I were you I'd ask for the blood test before removing it from your diet, but wish you luck whatever you choose :)

 

Thank you, JMG!  My doctor is not one to give out blood tests for the asking, but when he does, he then reacts as if I have yet another disease that needs to be checked monthly! And if I have another disease, he gets worse.  He's a good guy, but bugged a lot by what the authorities over him require.  To him, gluten will just be another allergy that I have, to be marked down on my records, but unimportant otherwise.  With PTSD, I avoid driving and towns, which is why I am avoiding the medical route.  It's not a whim...instead more of a preferred strategy.

 

As for a gluten challenge...if I need it that badly, I'll go for the embaressing rectal one.

 

I have found over the many years of fruitless medical tests that if you already cannot be diagnosed, you have to do the diagnosing yourself, and then negotiate with your doctor if you require proof. 

 

I just don't really see what good proof of yet another disease will get me at this point.  But I thank you for the concern, and the kind words. 

 

I understand that most people needing diagnosing are at the beginning of their journey of coping with a health problem, not two thirds of the way through a life filled with them. 

 

Having had bad IBS for 40 years, and lot's of other stuff added on, I am yet healthier that I was 3 1/2 year ago when I began juicing heavily to get the nutrition...it's just that I am not making any more progress, so I know it has to be something else in my diet, and gluten fits better than anything else.

 

I split this out to its own topic.  I thought the OP might get more help in his/her own topic rather than tagging onto a dormant one.

 

Thank you, Karen.  I don't even think I remember where I posted this originally...I get lost easily!

 

Hi Questore,

 

Welcome to the forum! :)

 

It's ok to go gluten-free before testing, but it may make testing later difficult.  If you did decide to get tested for celiac disease later, you'd have to resume eating gluten and eat it for up to 3 months.  That can be very unpleasant if gluten is a problem for you.  But if you aren't interested in testing, then going gluten-free now is fine.

 

Going gluten-free isn't an instant fix to symptoms for many people though.  So you should plan to stick with it for 6 months to a year and half.  Really a year minimum is best.  It takes time for the immune system to settle down after removing gluten, and for the gut to heal.  That doesn't mean there isn't a possibility of symptoms relief early on, but it varies with  people.  You'll probably get more responses if you post a new thread.

 

Even if you aren't celiac, eating whole foods instead of processed foods may help your body.  You will be avoiding a lot of preservatives, color enhancers, emulsifiers, soy, etc by staying away from processed foods.  Some people have reactions to those things.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy if it causes symptoms.

Avoid sugars and starchy foods. They can cause bloating.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Wow...a lot of great ideas!

 

Get tested before starting the gluten-free diet.  I'll wait, but I know what I face if I don't.  Embaressment!

Get your vitamin/mineral levels tested also.  That I will ask for!

Don't eat in restaurants  I never do anyway, but if I have to I'll get a steak and a baked potato...and pray!

Eat only whole foods not processed foods.  Easy...hardly ever do anyway, and what I had all had Wheat in it, and is long gone.

Eat only food you cook yourself, think simple foods, not gourmet meals.  I'm not much of a cook anyway...I've been eating very plainly since I got diagnosed with IBS 40 years ago.

Take probiotics.  Will Do!

Take gluten-free vitamins. Will Do!

Take digestive enzymes. Will Do!

Avoid dairy if it causes symptoms.  I rarely ever use it...I even avoid the cheese sauces except as a major treat...and usually regret it..

Avoid sugars and starchy foods. They can cause bloating.  What is bloating?

Avoid alcohol.  Okay

Watch out for cross contamination.  Definately

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Do you keep oats in the freezer to avoid mold?  Or the batches of oatmeal in the freezer?

........

Well, Laura just told me only Red Mill, so I am ordering it.   Hopefully, the oats that I have for long term storage are not contaminated, but there is no way tell without trying them after I've been gluten free a while to get an idea.  I may just give them away too, until I have a guaranteed bulk supplier for dry long term storage.

 

 

I keep my oats in the freezer to avoid them getting stale since it takes me a while to go through the big bag.  I will also put individual servings of oatmeal in the freezer to easily heat up if I know I am not going to want to cook in upcoming days.  There are other places to get certified gluten-free oats, but the key is they will say certified gluten free on them.  If you bought regular oats for long term food survival storage, unless they say they are gluten free oats they are not going to be safe.  Generally, gluten free oats are going to have a higher price tag as well, but compared to other gluten-free foods they are still pretty reasonable in cost.

 

Here is an article that talks about oats and gluten:  http://www.thekitchn.com/the-oat-conundrum-are-oats-glu-137074

 

Keep reading around this site and others, and over time the whole "What can I eat?" question will be a little easier.  When I was diagnosed, I gave all my gluten-filled pantry items to a family I know with a bunch of kids to feed.  Took the sting off losing the money I spent on the items to know their family was benefiting from it.

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