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Marc49

What Should I Do Now?

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Yes,......you are making perfect sense!

I am going to stick with this for a much longer period of time than I had planned due to your responses.

Hopefully someday I may be able to answer a question for you?

I doubt it! :rolleyes:

I am no "expert" I assure you!!--but anyone else on here will tell you the same thing, I think.

Okay, you hang in there!

I hope you solve your bread dilemma....we make our own, but keep Udi's bagels in the freezer.

um...the packaged bread does, indeed, suck...LOL


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Your thread is titled "What should I do now?" and I agree with the others, that now you need to try the diet very strictly. It should answer the question of whether or not you tolerate gluten. Keep in mind that you may also have a problem with lactose and should avoid that to start with too and buy one of those 'expensive' almond, hemp or rice milks (but not Rice Dream which is gluten contaminated). :)

Really? Rice Dream says that it is "gluten free" ARGH!!!!

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Really? Rice Dream says that it is "gluten free" ARGH!!!!

A lot of people have no problem with it. However, many people react to it because barley is used during the refining process. The company claims no detectable gluten residue but some react.


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

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A lot of people have no problem with it. However, many people react to it because barley is used during the refining process. The company claims no detectable gluten residue but some react.

And I unfortunately am one of those that react. :angry:


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

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For what it's worth, I forgot to mention the test that I think influenced my functional medicine doc to have me do the gene test.

It was a saliva based test that he was mainly using to check my cortisol levels throughout the day.

Anyway a thing called Gliadin Ab, SIgA came back as 'borderline' at 14. the scale was 13 to 15 U/ml, and over 15 is considered positive. Under 13 is considered negative I guess.

Of course I have no clue whether this test has any relevance.

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It is interesting that your doc was checking your cortisol levels. Were you fatigued? I had mine done the same way (saliva testing)because my doctor's thinking was check the hormones and see why I was losing my hair and feeling so tired... Many think those tests are "invalid" because it's not "mainstream"...

I had it done by an ND because no MD was taking me seriously. I was a "racing" insomniac for a while (very agitated, heart racing, anxious--for no good reason ) and little did I know that celiacs often have fluctuating blood sugars, thyroid hormones, and estrogen/testosterone,etc. levels as well because of the effect on the adrenal glands/immune system. Once the gut is compromised, the rest of the body is impacted as well, just in various ways.My sister has diabetes and thyroid issues, for example, but no GI problems....I have chronic musculoskeletal pain/GI issues/miscarriages and TON of other things...yet we share the same underlying disease. My blood work looks good, except for B-12 and D, which I supplemented and are now fine.

I see you are taking a D supplement. Good!

As we compare notes in our family, it becomes obvious...lifelong issues that may have been prevented if we had a GENE test back then. Bummer.

Ah well....as I have said, you have yours and that gives you the incentive to do what needs to be done to stay well and AVOID further autoimmune problems.

Boy, I learned a LOT about the human body the last few years doing my research...probably more than I ever wanted :huh: LOL

Take care!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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IrishHeart,.....once again we have many things in common.

This doctor is actually an OB/GYN as well as an Endocrinologist, but he got into 'functional medicine' years ago. I was referred to him by my regular doc due to some of my weird complaints.

My cortisol actually registered high in the AM and also in the PM.

AM is the highest level as you know, but I was above normal.

I also have tachycardia although it is benign and fairly mild. I also am hypertensive, but then again most of my family has been that way.

Like you I have trouble sleeping at night, although it seems to be getting a bit better in the last few months.

Again,......like you,.....I was deficient in Vitamin D and B12 as well. My B12 levels were in range, but low end and my regular doc said it's due to the Nexium that I take for GERD.

Yea, I know,.......another symptom! B)

I wanted to pass this info on to you since you are dealing with an open minded doctor it seems.

I had a test done that is called NutrEval by a company called Genova Diagnostics. This thing checks every nutrient level in your body all the way to the fatty acids like omega 3.

It is both blood and urine based, and is a bit of a pain to be honest but I think it shows a VERY broad picture of how your body is handling/processing nutrients. You may want to check it out with your doc.

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Thanks, but my days of spending more money on tests are over. My progress will have to be my diagnostic tool from now on. And lab work covered by insurance through my PC doc. I am broke!

A functional MD and an ND for 2.5 years...no help.

No help from any MDs for that matter.

$10K on tests, (pee,poop,blood) and $12K on herbals and supplements (and now, I have an intolerance for salicylic acid, thanks a lot) and $18K on various treatments (acup/MFR/PT/MT/chiro) for muscle pain..NOTHING to show for it. I am in the same agonizing pain I was when I started.

I listened to doctors who told me it was NOT something I KNEW it was...who symptom-treated me instead of uncovering the CAUSE.

Why didn't any of those treatments help?

The underlying cause for all of it is a leaky gut due to gluten. If THAT isn't addressed, nothing will help.

What I know now......sigh....

Ya know, Marc....Every time you post, you tell me another symptom :blink: ...my friend, you have celiac, whether your GI doc thinks so or not...between the positive Gene test and the many symptoms (that is why I posted you that list) ....geesh, what more do you need to know?? :)

again, just my opinion.... I hate to see anyone floundering around as I have when the answer is right in front of them....take care.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Your sleep has improved in the last few months, you say? hmmm......why, what has changed?...oh, that's right,...no gluten!!

Ta-Da!!!

hang in there!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Thanks, but my days of spending more money on tests are over. My progress will have to be my diagnostic tool from now on. And lab work covered by insurance through my PC doc. I am broke!

A functional MD and an ND for 2.5 years...no help.

No help from any MDs for that matter.

$10K on tests, (pee,poop,blood) and $12K on herbals and supplements (and now, I have an intolerance for salicylic acid, thanks a lot) and $18K on various treatments (acup/MFR/PT/MT/chiro) for muscle pain..NOTHING to show for it. I am in the same agonizing pain I was when I started.

I listened to doctors who told me it was NOT something I KNEW it was...who symptom-treated me instead of uncovering the CAUSE.

Why didn't any of those treatments help?

The underlying cause for all of it is a leaky gut due to gluten. If THAT isn't addressed, nothing will help.

What I know now......sigh....

Ya know, Marc....Every time you post, you tell me another symptom :blink: ...my friend, you have celiac, whether your GI doc thinks so or not...between the positive Gene test and the many symptoms (that is why I posted you that list) ....geesh, what more do you need to know?? :)

again, just my opinion.... I hate to see anyone floundering around as I have when the answer is right in front of them....take care.

:D

I understand what you are saying 100%.

Actually it is my functional medicine doc that goes against all the others.

He has told me I need to stay gluten-free, and that I have leaky gut. I do believe he is a diamond in the rough to be honest.

I guess I am looking for an easy way out,.....sure you know what I mean. I am trying to not face changing my life 100% in terms of food forever. I think it's called denial,.....ya know, that river in Egypt.

BTW,.....if you have insurance, that test I talked about will only cost you about 150 bucks through a program they call 'pay-assured.'

Without insurance I have heard it's 1200 to 1500. :o

Sounds like you don't need it anyway at this point.

I truly wish you the best, and I thank you once more for some very good advice that I DO believe I will heed!

You take care as well! :)

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This will sound funny, but I am GLAD it's celiac. At least NOW I know why I have been so sick and in pain and what can be done to save my life. It has been HELL.

Yeah, denial ....my whole family is in it!!--they refuse to think they have this, too---it's only me....they are ALL sick and have mega-autoimmune diseases...ah well, I have told them what they need to do....

You know that expression, you can lead a horse to water.....but you can't hold his head under... :lol:

Hey, let me know how you are in a few weeks!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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..

You know that expression, you can lead a horse to water.....but you can't hold his head under... :lol:

..especially when it's firmly buried in the sand...:lol:


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

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'shroom...you HAVE met my family,then :lol: :lol:


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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