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Needing Words Of Advice/encouragement


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16 replies to this topic

#1 CajunChic

 
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Posted 26 January 2014 - 07:51 AM

I've never been given a diagnosis of celiac. My Dxs are: Ibs-c, GERD, bile reflux, gallbladder disease (removed in 2009), endometriosis (lap in 2012), anxiety, IgA deficient, lactose sensitive. My hair is falling out, teeth are losing enamel in the front and are super sensitive. My blood work all came out negative, more were ordered after seeing IgA deficiency. My scope showed only increased intraepithelial lymphocytes. Dr says cant have celiac, just must be gluten sensitivity. Because of not having the dx, I tend to cheat on my gluten-free diet, especially since its king cake season in southern louisiana : ) After about a day or two, my muscles ache, headache starts, bloating, gas start for days. I know it's uncomfortable, but without knowing I'm damaging my gut, I don't have full willpower to not eat it! I do have a sister and aunt that are amazed at how awesome they feel after going gluten-free, but neither were tested for celiac. I just wonder if it will show up years later or am I struggling to accept I have only an intolerance. Thanks for reading my novel...
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"Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul."
3 John 1:2

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#2 GottaSki

 
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Posted 26 January 2014 - 08:19 AM

It is very frustrating to be told you don't have Celiac Disease -- this happened to one of my teenaged sons right after I was diagnosed -- yet nearly all of his health issues were resolved eating gluten-free.  It took about a year and about three intentional slips for him to decide he coe uld never eat gluten...regardless of the label.  Have you had gene testing?  While having genes does not by itself indicate Celiac, it can be an important part of the puzzle -- it was for my children.

 

What you do have is numerous symptoms of Celiac Disease, increased lymphocytes (first stage of Celiac - but not specific to Celiac) and improvement to symptoms gluten-free.

 

It is very possible that you were in the early stages of Celiac when attempting diagnosis, but even Non-Celiac Gluten Sensitivity requires complete dedication to removing ALL gluten from your life.

 

This falls under advice rather than encouragement ... if you want your health to improve - stop eating gluten.

 

Hang in there :)

 

PS....just thought I'd add...you were diagnosed with NCGS...If your doctor said "just gluten sensitive" - you may want to find a Celiac specialist in your area to have them review your file....perhaps a well qualified second opinion will help.


Edited by GottaSki, 26 January 2014 - 08:36 AM.

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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 nvsmom

 
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Posted 26 January 2014 - 01:56 PM

Ditto all that Lisa said. You haveNon-celiac gluten intolerance at the very least. That's basically the same as celiac disease but without the villi damage... but you have the beginning of villi damage so I would guess at celiac disease too.

 

You can be 100% gluten-free. You can do it. Yeah it sucks sometimes but you are really paying for those king cakes - a few minutes of pleasure and you are paying in obvious symptoms for days, and with less obvious internal damage or inflammation for weeks. I doubt they are worth it. What are king cakes, by the way? I'm in western Canada and haven't ever heard of that.  Could you make a gluten-free version of it?

 

I understand about missing foods. I was brought up with Ukrainian foods and thought I would never have another pierogy again. :( And I didn't for a good year and a half but then my mom, in a true labor of love, made some time consuming gluten-free pierogies for me. They were to die for. And no, they weren't quite the same as the wheat flour ones but they were a thousand times better than nothing.  Pirogies are like dumplings usually filled with potatoes and old cheddar and then slathered in butter and fried in onions. Mmmmmmmmm.

 

Skip eating out if it's too much for you. Meet up with everyone later for coffee or drinks. If you can't stand up to the temptation, then avoid situations where you will be tempted.

 

You need to keep yourself well. Food isn't worth poor health, bad quality of life or even dying young.

 

You can do it!


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#4 CajunChic

 
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Posted 26 January 2014 - 02:33 PM

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (
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"Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul."
3 John 1:2

#5 glutenfreeliac

 
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Posted 26 January 2014 - 03:07 PM

Every time you're tempted to eat gluten, think about what you've written here. Celiac is just one thing on the gluten-free scale. Non-celiac gluten sensitivity is just as real as any other illness, and should be treated as if it were celiac. No gluten. No king cakes -- I get temptation, but when it (now rarely) hits me, I remember how sick I was. There is no food in the world worth going back to that. None.

 

Now, it's possible you may have other issues in addition to gluten, and that you should see another doctor, one who is willing to focus on your problems. Not every doctor is a right fit for a patient, and not every doctor has a full understanding of auto-immune diseases like celiac. 


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#6 cyclinglady

 
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Posted 26 January 2014 - 03:19 PM

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!
Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (

Ah, King cake! I have not tried a GFversion yet, but it should not only be possible, but delicious. Start a separate thread and I bet someone has a good recipe or google it. There are several gluten-free recipes available. They all use for yeast and will take a little time, but perfect for a Sunday afternoon.
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Hashimoto's Thyroiditis -- Stable 2014
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#7 nvsmom

 
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Posted 26 January 2014 - 04:16 PM

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (

 

Oh... that does sound good! LOL  I had a hard time walking away from my Grandma's sweet dough cinnamon bun recipes. I can still imagine the flavour and texture. Mmmm. I made a point of not having any gluten-free cinnamon buns for a good 6 months after going gluten-free. It gave my taste buds some time to (sort of) forget how much I loved them. When I finally did make them in a gluten-free version, I was pretty pleased with the results.  You might have to give up King cakes from a while so when you finally try a gluten-free version, it's quite a treat even if it's not the same. KWIM?

 

And just to confuse you further,  ;)  there is a small minority of celiacs who tested negative for the "celiac genes" (DQ2 and DQ8) so getting a negative test isn't 100% that it isn't celiac - it's somewhere around 95%.

 

Which blood tests did you have? As one who is IgA deficient, you would want the tTG IgG, EMA IgG, DGP IgG, and maybe the old (and less reliable) AGA IgG. By the way, being IgA deficient also points to celiac disease, although it's not diagnostic. About 5%, or 1/20, celiacs are IgA deficient which is higher than the regular population.


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Nicole Posted Image

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#8 CajunChic

 
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Posted 26 January 2014 - 06:00 PM

Cyclinglady-I'm definitely going find the gluten-free version and test out my baking skills! Are you from Louisiana, since you know the heavenly treat? Or do we not have the monopoly on King cakes here, lol

Nvsmom-I've had all of the tests you've mentioned except for the AGA IgG. Thanks for all of the information! I'll peruse the genetic tests, then give up and *try* to be content with my dx as is. I will take your advice and distance myself from my sweet demons for a while.

Glutenfreeliac- boy did I learn that not every dr is made for every patient! He was my 3rd gastro! I appreciate your advice and will work on my stubbornness towards NCGS. Though being called a celiac would help me stop glutening myself : /
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"Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul."
3 John 1:2

#9 cyclinglady

 
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Posted 26 January 2014 - 10:15 PM

Like Nicole suggested, wait for six months before attempting to make or eat a King's Cake.  That way you'll "forget" what the wheat version tastes like.  It's bound to be good.  I just served homemade gluten-free chocolate mayonnaise cupcakes to three gluten eaters and they couldn't even tell the difference.  I was in a totally gluten-free restaurant this past fall and we ordered cupcakes for dessert.  Although it was fantastic to be eating in a totally gluten-free restaurant there is nothing like a cake or bread that has just come out of your own oven.  It is so very fresh especially if you use great ingredients!  

 

Alas, I am not from LA.  However, my dearest neighbors were from the New Orleans area -- Mandeville and Houma.  We got to visit their extended families, etc. often.   Now, they have left our state and are living near Lake Toledo Bend.   Anyway, each year, their family shipped them a King's cake via Fed Ex.  It's very similar (except for the colored frosting) to some Polish cakes made from yeast.  It's very good and it's fun to see who gets the "baby".  

 

I do want you to know that although I was formally diagnosed 3/2013, my husband has been gluten-free for 13 years.  He went gluten free at the advice of my allergist and his GP.  The first year was a huge learning curve, but at the end of the year, he knew for sure that gluten was making him sick.  He has never cheated since but has been accidentally glutened outside our house.  He refuses to get tested because he doesn't want to do the challenge.  So, it is possible to adhere to the diet without a formal diagnosis.

 

Take care.  You do not have to give up delicious goodies.  I always bake and freeze small portions to have on hand.  I am never without my gluten-free desserts!


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Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
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Allergies and Food Intolerances
Diabetes -- January 2014




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#10 CajunChic

 
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Posted 25 February 2014 - 01:41 PM

Just wanting to celebrate!! My dr finally gave me a celiac diagnosis!! Not that I'm happy about it, I'm happy about being validated. 10 years and thousands of dollars later...I have celiac. My friends don't get the impact of that statement, but I knew y'all would : )
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"Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul."
3 John 1:2

#11 kareng

 
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Posted 25 February 2014 - 01:47 PM

Just wanting to celebrate!! My dr finally gave me a celiac diagnosis!! Not that I'm happy about it, I'm happy about being validated. 10 years and thousands of dollars later...I have celiac. My friends don't get the impact of that statement, but I knew y'all would : )

 

Congrats and welcome to the club!  Unfortunately, our secret de-coder rings and matching club ties are on back-order!  The good news is we don't  charge any dues.   :lol:


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#12 notme!

 
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Posted 25 February 2014 - 03:44 PM

welcome to the best club you never wanted to join!!  LOLZ  :P   glad you got a firm diagnosis  :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#13 livinthelife

 
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Posted 25 February 2014 - 04:10 PM

welcome to the best club you never wanted to join!!  LOLZ  :P   glad you got a firm diagnosis  :)

FUNNY!!!! Throwing up the celiac gang sign!! Maybe also tossing up some toilet paper!!

 

Even though you didn't *want* to hear your DX, at least you know what to do now!! That's a great thing!!


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#14 cyclinglady

 
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Posted 25 February 2014 - 04:54 PM

What a relief for you. Now you can move forward!
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#15 CajunChic

 
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Posted 26 February 2014 - 04:10 AM

Thanks for the humor and support!! My husband especially enjoyed the celiac gang signs, lol. So now he's calling me a gluten gangster....now on to the rest of life!!
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"Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul."
3 John 1:2




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