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My View On Diagnosis, My Personal Situation


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13 replies to this topic

#1 StephieRN

 
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Posted 06 November 2012 - 06:05 AM

I personally do not plan on receiving a formal physician's diagnosis for celiac disease.
I am 10000000% I have celiac disease, as well as my daughter. We also do not have insurance. When she goes to college in 18 months, we will both have insurance, but we will be healed enough by then that surely any tests will be negative, and I'm not going to live in misery again for however long just to produce a positive test result! For me, the diagnosis is just not important. Treatment is our lifestyle change at home, not really affected by a Dr agreeing.

Anyone else in this situation or feel the same?
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#2 GottaSki

 
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Posted 06 November 2012 - 06:44 AM

I'm not in your situation, but do agree that waiting 18 months to start healing is a very bad idea.

I do suggest you keep a detailed symptom list for each or you, along with improvement in symptoms - you may discover some symptoms improve that you never consiered to be more than just a bit of this or that.

With your daughter headed to college an official diagnosis may be needed for her meal plan - there are doctors that will diagnose on symptom resolution alone, but these are rare. Document as much as you can - take pics of any skin issues or mouth sores, etc.

In case you would like to consider getting blood work before you remove gluten - HealthCheckUSA offers a full celiac panel for $200.

Good luck to you both :)
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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 StephieRN

 
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Posted 06 November 2012 - 07:01 AM

If I had an extra $200 I would actually consider that.... But considering I just spent $300 turning my kitchen gluten free I'm a little budget right LOL. But thank you sooo much!

You make a really good point about my daughter and the college meal plan...
When we've discussed this issue she says she will eat whatever can't live without sliced bread (keep in mind 17=stubborn).. I've had to compromise with that, baby steps, she can have her loaf of bread in the kitchen and maybe after she's used to the rest of the diet changes, she'll try my bread and change. For her, the mild occasional skin rash is tolerable, the acne she's dealt with since 8 years old, and she's accepted not being able to breathe through her nose and using an inhaler every few days. So the trade-off is not important to her. When she gets older and is tired if the symptoms it may be a different story.
(I probably forgot to mention that when her doctor did an allergy panel on her when she was 7, wheat was her most severe one. So at the very least she is wheat allergic, I just believe with other symptoms she is celiac positive as well).
So my goal for her is to just provide the right food here at home, let her have her stupid bread, and hope that by the time she goes to college her habits and choices will have changed a bit. And also send her gluten-free goodie boxes every month :)

I'm sorry this post was so long! I'm not at all wanting to be a celiac disease whiny baby :) I just like to explain stuff

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#4 StephieRN

 
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Posted 06 November 2012 - 07:02 AM

Oh I forgot to add, I am definitely taking pictures along the way, but the journal is a great idea I had t thought of. Starting tonight :)
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#5 GottaSki

 
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Posted 06 November 2012 - 07:18 AM

Not whiny at all - let us know if you have any questions during your transition - getting all the gluten out is not easy and healing can take time and bring a whole new list of frustrations - but it does get easier with time!

Your daughter's symptoms are very similar to one of my sons - he decided to remove gluten over three years ago when I was diagnosed to see if his symptoms improved. They did and within a few months he was unable to tolerate CC so he hasn't intentionally ingested gluten since his first six months gluten-free. I certainly don't think you can make a 17 yr old go gluten-free, but she may come around as your health improves with strict compliance.
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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 :)


#6 guest134

 
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Posted 06 November 2012 - 07:48 AM

Try the gluten free and if it works it works, if it doesn't than no harm done. That being said though if you have a serious list of symptoms it is best not to self diagnose and get an actual diagnosis, many different diseases that cause similar symptoms to celiac, in fact celiac is considered the "great imitator". It would be best to find your ailment before beginning treatment.

If you have 18 months before being insured than you should have enough time to cut gluten out for a while and then go on the gluten challenge to get your official diagnosis. I believe they say it is about 3 months of eating gluten to get accurate results.
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#7 nvsmom

 
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Posted 06 November 2012 - 07:50 AM

My boys all had negative tests but I suspect gluten is an issue for two of them. One son is significantly smaller than his brothers; in fact his 7 year old brother (he is 9) is now taller than him. He also has an occassional stomach ache and gets headaches. My youngest used to go to the bathroom about 8 times a day, and always during a meal; it's now just twice a day and he has no more D. I made our house gluten free because I felt it won't hurt anything and could help them... it appears to be a good decision so far.

Udi's makes the best store bought gluten-free bread. Your daughter might like it. There is a recipe for 90 second microwaveable buns on this forum here: http://www.celiac.co...ead-in-minutes/ My pickiest bread boy even likes these but we use coconut flour instead of almond meal.

I don't have a teen yet, just really picky young kids, and they fought me for weeks over bread but they slowly came around once they realized I wasn't buying wheat bread anymore. If you are pretty sure your daughter would do better without gluten, I would set a date a couple of weeks from now when you will stop buying it. Warn your daughter so she is prepared. A slice of bread a day will undo any good that eating gluten-free does for her. In fact, to test positive for celiac, it is recommended that one eats one to four slices of bread (or equivalent) per day. It might be a good idea to get her used to it before college so there's not so many changes at once.

Best wishes to you and your daughter.
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#8 GottaSki

 
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Posted 06 November 2012 - 08:01 AM

Yep, your daughter may like udi's - I can guarantee by the regular invasion of groups of teenaged gluteneaters to my home that teenaged boys love it and never complain about gluten-free cakes, cookies and cocoa peeble rice krispy treats while hanging out here. One kid was able to convince his parents that he thought his dad and sister may have celiac and that their kitchen could be gluten-free without losing their favorites - living completely gluten-free is not easy but not as awful as many envision either.
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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 :)


#9 StephieRN

 
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Posted 06 November 2012 - 08:32 AM

I have a loaf of Udi's in the fridge right now! :) good to know its not awful, I haven't tried it yet and I won't feel bad when I set a date to stop buying the Sarah Lee.
The support in this place is awesome, thanks :)
Nvsmom- kudos for the recipe! I'm kinda excited about figuring out new yummy stuff to make
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#10 frieze

 
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Posted 06 November 2012 - 09:01 AM

Yep, your daughter may like udi's - I can guarantee by the regular invasion of groups of teenaged gluteneaters to my home that teenaged boys love it and never complain about gluten-free cakes, cookies and cocoa peeble rice krispy treats while hanging out here. One kid was able to convince his parents that he thought his dad and sister may have celiac and that their kitchen could be gluten-free without losing their favorites - living completely gluten-free is not easy but not as awful as many envision either.

Lol, sounds like a politician in the making.....but really, good on him!
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#11 kareng

 
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Posted 06 November 2012 - 09:15 AM

We don't like white bread. The kids found no difference in the Udis whole grain hamburger buns and the Sara Lee WW ones. They aren't too picky about hamburger buns.

If you like a whole wheat bread (that isn;t wheat) try Canyon Bakehouse 7 grain San Juan bread. The main problem is that the slices are usually smaller than wheaty bread.
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#12 GottaSki

 
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Posted 06 November 2012 - 09:15 AM

Lol, sounds like a politician in the making.....but really, good on him!


The kid can definitely talk -- it's exhausting just listening to him at times -- luckily he always goes home ;)
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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 :)


#13 frieze

 
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Posted 06 November 2012 - 09:20 AM

The kid can definitely talk -- it's exhausting just listening to him at times -- luckily he always goes home ;)

LOL. Maybe you could "recruit" him as a celiac advocate?
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#14 mars817

 
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Posted 06 November 2012 - 10:00 AM

Personally I would like to have a diagnosis. I'm stubborn like that I guess but I'm a scientist and to me unless you can say that is what is wrong I'm having a hard time removing gluten.
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