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My Father Was Just Diagnosed With Celiac...


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#1 raininblack

 
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Posted 09 September 2012 - 08:19 AM

My father is 38 and was just diagnosed with celiac disease. He developed polyps and ulcers and the doctor says he'll get better if he abstains from gluten. He never had the really obvious signs of the disease, but in retrospect there are definitely a few things that can be attributed to it, like fatigue and random rashes and mouth ulcers. Apparently all of his villi(?)are destroyed, but he's overweight... My aunt, on the other hand, was diagnosed in her mid-twenties, and it was so bad she was hospitalized and was down to 90 pounds before they realized what it was (wasn't as well-know then).

I'm 20 and was diagnosed with IBS-C about a year ago, but I'm not content with that diagnosis, since it doesn't really help much. Lately I've had issues with heartburn, knee and joint pain and fatigue. My doctor did some bloodwork, but aside from my thyroid and iron levels I'm not sure what else he tested for but all of the numbers were normal. I hope it's not celiac disease because it'll definitely be hard to adjust to the diet, but at the same time, I want a valid diagnosis for my problems, if that makes any sense.

That being said, I've been reading on blogs/forums and apparently a lot of people get tests with inaccurate results and this makes me wonder if getting all of the testing done is worth the trouble, maybe I should just try cutting out gluten for a little while and see if it makes a difference. Any thoughts? I'd definitely appreciate any advice (SO glad I live in the age of the internet).
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#2 ravenwoodglass

 
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Posted 09 September 2012 - 09:38 AM

Since you have family members with celiac there is a good chance you have it too considering the symptoms you are having. Do get your doctor to run the blood work and if you choose to do the endo have it done before you go gluten free. After all your testing is finished then you can give the diet a good strict try no matter what the test results and see if it helps. The diet does take some getting used to but the alternative is having a signature like mine and others who went years before diagnosis.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 pricklypear1971

 
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Posted 09 September 2012 - 09:38 AM

I think you need to get your hands on your blood work and see if a full celiac panel was run.

For thyroid, they need to test tsh plus free t3/4 levels, plus thyroid antibodies. Also, most doctor's use the lab "normal" range as normal when most thyroid specialists who treat thyroid issues favor it 2 and below. Get your lab results.

You are young with a history of Celiac in your family. You are at extremely high risk, comparatively speaking, especially if you carry the genes. I'd request gene test, it isn't definitive but will give you a better idea if you carry the most common Celiac genes.

Is try for an official dx if I was you. You're in a good position to have doctors take you seriously given family history.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 sa1937

 
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Posted 09 September 2012 - 10:04 AM

You've already gotten some good advice from the previous posters. While the diet certainly has a learning curve, not all of us have found it to be that difficult. But by all means get tested before you go gluten-free.

You might also want to check out these fact sheets from the University of Chicago Celiac Disease Center. Lots of useful info. If a first-degree relative has celiac, you have a 1 in 22 chance of having it, too.
  • 0
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#5 raininblack

 
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Posted 10 September 2012 - 08:36 AM

Thanks everyone, I made an appointment to go get tested soon!

There's one other thing I'm not sure about though and it would be awesome if someone could clarify it for me.
From what I've read, even a minute amount can do damage, and I've been reading threads about people buying gluten-free shampoo just in case some got into their mouths while showering. Does this mean a bread crumb is JUST as damaging as an entire loaf? Giving up all of my favorite foods is overwhelming but the thought of having to buy gluten-free dog food just in case my dog kisses me (another thing I read) is incredibly depressing.
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#6 pricklypear1971

 
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Posted 10 September 2012 - 09:12 AM

The severity of the damage (for most) wouldn't be as severe (hopefully not the pain, either) but a crumb is enough to make the body start an autoimmune attack.

I've never intentionally glutened myself or seen what glutened me, so it's hard for me to give a personal example. One time exposure triggered an AI attack that i could tell lasted a few months. Other times it's been a few weeks.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 tarnalberry

 
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Posted 10 September 2012 - 09:15 AM

Yes, contamination can cause as much damage. Well, near as much as makes no difference. If you're house is flooded with two inches of water for a week or two feet of water for a week... either way, your floors are ruined.

The good news - gluten free (celiac "gluten free", not pet food "gluten free", so, really grain free) food is FAR better for your dog anyway!
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#8 frieze

 
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Posted 10 September 2012 - 09:15 AM

Thanks everyone, I made an appointment to go get tested soon!

There's one other thing I'm not sure about though and it would be awesome if someone could clarify it for me.
From what I've read, even a minute amount can do damage, and I've been reading threads about people buying gluten-free shampoo just in case some got into their mouths while showering. Does this mean a bread crumb is JUST as damaging as an entire loaf? Giving up all of my favorite foods is overwhelming but the thought of having to buy gluten-free dog food just in case my dog kisses me (another thing I read) is incredibly depressing.

It is likely that your dog would be better off gluten free any way.
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#9 Cara in Boston

 
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Posted 10 September 2012 - 09:18 AM

It sounds overwhelming at first, but after a while, you get used to it. I have yet to find a favorite food that I can't recreate in a gluten free form. Yes, it takes more time and planning, but your continued good health is worth it.

IBS would be unacceptable to me too . . . keep looking for the cause, not just a label for your symptoms.

All first degree relatives of people with celiac disease should be tested - regardless of symptoms. Since you obviously have symptoms (and I bet there are more that you are just not aware of or haven't noticed) you should be tested right away. If the tests are negative, a final test is the diet . . .give it a try for a couple of months and see if you don't feel much, much better.

If you figure out you don't have it, you still need to be tested regularly (my doctor said every 2 years for my kids) . . . it can develop at any time.

Cara
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#10 GFinDC

 
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Posted 10 September 2012 - 09:27 AM

HI Rainb

gluten-free dog food is better for your dog, if you can find it. The thing is dogs lick their fur and then you pet them and get gluten on your hands. Plus they lick your skin etc. Yes, small amounts like this could make you sick if they get into your mouth somehow. Some people are more sensitive than others, and some have dermatitis herpetiformis which is the skin rash associated with celiac. For those people avoiding gluten in shampoos is more important. But it isn't a bad idea to get rid of it for anyone. If you wash your hands before eating, flossing etc then it should help. People sometimes get more sensitive over time also.

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

Get tested before starting the gluten-free diet.
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 digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Some threads with good info:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 raininblack

 
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Posted 10 September 2012 - 11:15 AM

My dogs would definitely be healthier on a primal-ish diet (well, we'd be too) but I still live with my family so I don't have a choice in whether or not we have gluten-free dog food. If it's more expensive I doubt they'll buy it. I'm barely going to be able to afford produce and meat...I'm not going to be able to afford to make anything close to what I love, too many special expensive ingredients to find/buy. It's just gonna have to be chicken (not deli meat though :( ) and lettuce and bananas and rice and repeat.

Apparently I'm not going to be able to go out to dinner with friends or if I go I'll just have to sip water unless I know for sure something is safe (heck, the server might touch some bread and then touch the glass or the straw and it's all over). I'll have to bring celery sticks or something if I want to go to an event because I won't know if I'll be able to eat there. I guess when I turn 21 I'll have to bring my own beer to the bar. -.-

Now I've been reading that after people remove gluten from their diets they can develop intolerances to other foods, not to mention some foods can cross-react. And once they go gluten free they start having severe attacks if they slip up/accidentally ingest some, and I know it's not an allergy but isn't that a little bit like a tolerance? And all it takes is a tiny amount to make someone feel terrible for days/weeks/months? And some people follow the diet perfectly and still have problems? Psssht. I know it's an all or nothing diet but I'm just gonna go somewhere in between and take my chances. Sorry for ranting. I appreciate all of your posts. Thank you.
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#12 pricklypear1971

 
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Posted 10 September 2012 - 11:32 AM

You can't go "somewhere in between" as a Celiac, and hope for recovery.

I know the idea of this is freaking you out, and you'd rather just not deal with it. I get it. But if this your issue you're going to have to. Untreated Celiac disease can lead to severe health issues like organ damage, cancer, infertility - not to mention loss of quality of life including hindering your career and relationships.

You can eat out at places that can prepare safe food. A food handler touching someone else's plate isn't necessarily going to get you. I eat out safely all the time.

Yes, you will change your lifestyle somewhat. You will learn self control and planning. You can do it. We all do it, every day.

You don't have to buy expensive gluten-free processed foods. Aside from gluten-free grain mixes for baking (and I don't do many grains), and pasta I buy my food at the regular grocery store.

You aren't in this alone. Your Dad is going through this too. I'd assume you could expect support at home since your Dad will be going gluten-free?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 ravenwoodglass

 
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Posted 10 September 2012 - 12:08 PM

You can't eat just chicken, rice, lettuce and bananas and be healthy. All vegs are gluten free as are fruit in their natural state. Frozen veggies are cheap if you are afraid of waste with fresh ones. Thai Kitchen rice noodles are safe, cheap and make a great inexpensive quick meal with some veggies and perhaps some beans thrown in. They are also good with pasta sauce. There are quite a few mainstream items that are gluten free so you don't always have to go with specialty gluten free items. Tell us what your favorite foods are and we can give you some suggestions for replacements.
I know the idea of having to deal with this is hard. Many of us also go through withdrawl which can make us depressed or irritable. It will pass. We are here to help in any way we can.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 raininblack

 
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Posted 10 September 2012 - 12:40 PM

I currently take digestive enzymes and I get probiotics through yogurt and cheese, but if I got rid of dairy that would stop. I tried taking a pill form of probiotics and it was awful, never again. I read that your gut bacteria adapts to what you eat and most of the bad ones eventually die off if you quit feeding them, so I figured if I eat well most of the time I'd be okay. Before all of this I was planning on going to the doctor for an SIBO test anyway, I guess I should ask about any other comorbid conditions too. I take a multivitamin and I plan to start taking Omega 3's.

My dad's only been on the diet for a few days and I'm not sure if he will continue it, to be honest. My mom's trying to find things he might like but he hasn't liked anything so far. My mom and my two little brothers plan on continuing the way they eat...

I guess I'm just having a hard time accepting "never" for an answer. I don't expect a full recovery now, especially since it seems like some people go all-out and still can't recover. I just don't understand why a little here and there would be SO bad if my diet was great most of the time. I don't really plan on trying any more gluten free packaged foods (ew) and besides I'm sure they cause inflammation and other issues too... Maybe I just need more time to come to terms with it.
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#15 pricklypear1971

 
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Posted 10 September 2012 - 01:35 PM

I know it's hard to accept. Really.

Celiac is an autoimmune reaction. While it may FEEL like a digestive issue for some (and it is in the way it obviously expressesitself) - like eating bad fish or a food that doesn't agree with you, it isn't.

Eating a little bit of gluten, once in a while, is Iike eating cyanide once in a while. Gluten is literally poison to a Celiac. Eat enough poison once in a while and well, ya know...

The autoimmune reaction is dangerous because of various things, but the biggest culprit, generally, is inflammation. And the attack on organs. A little bit keeps that low inflammation smoldering, eating away at body systems and organs.

You can eat the cleanest diet on the planet and it will still trigger an AI reaction in a Celiac if it is a gluten containing diet.

You can't use the extreme examples - super sensitives and refractory Celiac as an excuse not to adhere to a gluten-free diet, if it's your issue. You're talking about a small percentage of Celiacs. There's no reason to believe you'd be one of them until you tried the diet.

The first year of gluten-free is tough. Especially if you see others not adhering to the diet. Ultimately, your health and your life is your responsibility. You would be fortunate to be dx'ed so young and to have a chance to heal your body with a chance of not developing long-term complications that others deal with when dx'ed later.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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