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16 replies to this topic

#1 DavinaRN

 
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Posted 03 October 2012 - 04:34 PM

Just wanted to introduce myself. I'm 43, married, mother to special needs son. I have not been diagnosed by a Dr, but the way I feel better when I eat a non gluten meal tells me this may be the answer. I pretty much ruled out wheat allergy, because reacted to a granola with barley malt. I realize that until tested I need the gluten, so one meal a day contains it (hoping Endo does blood work the 22nd). In the last 8 yrs, I have been dx with partial sensory seizures, PCOS, diabetes, gall bladder disease (removed), lung birth defect (1/2 of lung removed-we were really hoping this would fix bone weary exhaustion). I also have migraines, long bone and joint pain (but no arthritis seen even on MRI), vit D deficiency, still exhausted, frequently sick to tummy (motion sick feeling), feel like I need to have bowel movement frequently, but can't. My PCP said without diarrhea is couldn't be wheat related; so I'm sort of lying to Endo and telling her they suspect my mom has it so hopefully she will do blood work. I think my mom does have it based on tummy issues she has had since her 30's.

Have a great day everyone.
  • 0
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

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#2 mushroom

 
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Posted 03 October 2012 - 04:52 PM

Thanks for your story, Davina. May I say that your doctor doesn't know that the other 50% of celiacs have constipation, not diarrhea??? You do sound, at the very least, gluten intolerant. I hope you convince someone to test you (tell whatever lies are necessary for this :P :P :ph34r: because sometimes that's what it takes). And I am a Pinocchio :D

Let us know how things turn out.
  • 0
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

Celiac.com - Celiac Disease Board Moderator

#3 GottaSki

 
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Posted 03 October 2012 - 05:02 PM

Welcome!

Your PCP is wrong - glad you are pushing to be tested. Keep eating gluten until testing is complete and if the testing should all be negative - remove all gluten for at least three months. As you have already found - elimination is often the best test.

Good Luck to you :)
  • 0

-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 :)


#4 CeliacShack

 
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Posted 04 October 2012 - 07:17 AM

Best of luck to you. It's so frustrating when doctors won't listen.
  • 0
Colette

Diagnosed with PCOS - 2001

Biopsy- diagnosed Celiac / gastritis - June 2012

Trying to heal

#5 mamaw

 
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Posted 05 October 2012 - 03:05 PM

Please start nw & consume lots & lots of wheat! that way the test will be accurate....
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#6 DavinaRN

 
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Posted 05 October 2012 - 06:08 PM

Thanks for the replies. Had pasta for breakfast and by lunch was feeling a million times worse. Since I'm diabetic, still force feed myself a gluten free lunch and called my PCP associate for appointment. Told him about my fatigue and tummy issues and my little white lie. He seemed ready to do test until he asked about bowel movements (yes, I'm a nurse but no I didn't know it shouldn't float and be beige). At that point, he said GI doctor that I need lots of lab work, upper and lower scopes. I have a malabsorption issue (duh that's a symptom) and need someone who can tell me best way to replace stuff. So long story short is I can't afford all these tests, so going gluten free. I figure as I heal I will absorp and it will sink. If not I'll do the challenge after the first of the year and see the GI.

Now my question, how long before I start feeling better?
  • 0
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#7 GottaSki

 
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Posted 05 October 2012 - 07:23 PM

I understand your frustration, but strongly encourage you to get a full celiac blood panel now. Once gluten free you lose the possibility of accurate blood tests and people often regret not getting the blood tests before going gluten-free. As time passes you may doubt the need to be gluten free - improvement can be slow - often you have improvement at first followed by some setbacks - which leads to more questions, doubts and frustration.

Perhaps you can explain to your PCP that you can not afford to have scopes right now and will be removing gluten to monitor symptom improvement. Explain that you understand removing gluten will make celiac testing inaccurate so you would like to have it done now and will take the referral to GI if you do not improve???
  • 0

-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 :)


#8 DavinaRN

 
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Posted 07 October 2012 - 06:02 PM

GottaSki I already went gluten free. I tried everything I could to talk him into it, was about in tears. If need be I'll do a challenge latter.
  • 0
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#9 GottaSki

 
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Posted 07 October 2012 - 06:31 PM

So sorry - unfortunately I know the frustration of doctors dismissing symptoms - had my symptoms dismissed for years. Glad you are ready and willing to go gluten-free. The transition can be very tough, but elimination is often the best test.

Wishing you speedy healing :)
  • 0

-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 :)


#10 GFinDC

 
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Posted 08 October 2012 - 08:36 AM

Healing time varies a lot. There is no one answer that fits everyone. Ii helps to start off with a whole foods diet and keep your meals simple. Grain free may help also.
  • 0
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 DavinaRN

 
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Posted 09 October 2012 - 08:40 AM

My endo is going to do blood test, so going back to gluten after being off 4 days. Test on the 19th.
  • 0
Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#12 GFinDC

 
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Posted 09 October 2012 - 03:53 PM

Sounds good Davina. Be sure and get a copy of your test results in writing. The test results should include the actual tested numbers and the range of acceptable numbers.

Some people have C and some people have D with celiac. Then some others have both C+D at different times. Your doc doesn't know what he is talking about.
  • 0
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

#13 NightOwl

 
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Posted 11 October 2012 - 10:11 PM

Thanks for your story, Davina. May I say that your doctor doesn't know that the other 50% of celiacs have constipation, not diarrhea??? You do sound, at the very least, gluten intolerant. I hope you convince someone to test you (tell whatever lies are necessary for this :P :P :ph34r: because sometimes that's what it takes). And I am a Pinocchio :D

Let us know how things turn out.

I didn't know celiacs could suffer from constipation! That was the story of my life, in fact, I had intestinal/digestive problems on/off since childhood but the bane of my life was constipation, then in the last couple of years began having both intermittently and finally very directly after eating wheat sometimes, so it's very possible I already had problems with gluten or at least wheat way back then.

Oh, sorry! Hi Davina! I hope you will soon be able to go on your gluten-free diet so you can start feeling better soon!

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#14 WOEProGirl

 
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Posted 08 November 2012 - 01:40 PM

Sad story, same here! My PCP brushed me off, wouldnt run tests, prescribed steroid cream for my (totally non-gluten like, I admit) rash. She said, well, if you honestly believe that's your problem no one is stopping you from eliminating it on your own. It would have been easier to committ with some certainty, though. In my family, dad is the only one actually diagnosed with "intollerence" but his niece (my 1st cousin), my brother and I all eat gluten-free of our own choice. It just feels too good to ever even consider consuming one more morsel of gluten voluntarily. It was a bumpy road at first and I doubted my choice but I acheived certainty 7 months in when I decided to try casein (dairy) free as well. In 48 hours I felt SO GOOD, I had no idea how good good felt!! Even though my gluten-free family and I all talk frequently, my dad, brother and I all came to the decision to try casein free separately. It was all in the same 1 week period. Both my bro and I ate Lactaid ice cream (separately) and it made us sicker than anything since we had gone gluten-free. Dad went to a cooking class where the instructor highly encouraged all gluten-free to try Gluten-free Casein-free. Gluten-free Casein-free was the answer for us! Now we are all working to help our cousin learn what works and hopefully she will get better.

I'm 27 years old, my bro is 31. We suspect we've been having absorption problems all our lives based on non-genetic related spine and tooth development. But we both got really sick and immune system related px in our mid 20s. For me it was bad sleep, of all things, that finally got me to start complaining. Now I have no more arthritis-like pain, lichen plants erupting on all new and some old scars, brain fog (I hear others complain of that), normal stool, no more tummy aches, and sleep great (down to 7 hr night from 10)!

My first post on here! The posts others took the time to write have helped me so tremendously! I feel like I am not alone and there is hope!
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#15 mushroom

 
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Posted 08 November 2012 - 02:39 PM

Welcome to the board, WOEProGirl. I am glad to hear that some of our ramblings have been useful to you. Wishing you continued good health. And by the way, somewhere down the line you may once again be able to eat dairy :)
  • 0
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

Celiac.com - Celiac Disease Board Moderator




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