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Son Had Blood Test Today


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#1 Celiac Mindwarp

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Posted 05 December 2012 - 05:54 AM

My 5 year old was having follow up skin prick tests done this morning. I am pretty sure I have celiac, but couldn't last a gluten challenge and have been wheat free 9 years, so no surprise when blood and biopsy came back negative.

My GI was broadly helpful, and I am waiting for results of genetic testing. I am 'officially' Non Celiac Gluten Intolerant cannot rule out celiac.

My big concern was getting my kids tested but GI said they don't do testing for asymptomatic 1st degree relatives. Ahhhggg. I told him my sons symptoms and he said that my son is symptomatic but my GP wasn't convinced.

So - I asked his allergy consultant, and after a short discussion during which she spoke to me as if I was 5 she agreed to do it. Yeay!!!!

I am so glad to read about the other parents here and how to get round the joys of the medical professionals.

I am a bit shaky and shocked to have got it done, I was ready for a massive fight. That was well worth a couple of minutes being patronized. It is a mixture of relief at getting it done and concern about results.

Oh, and he is still allergic to almonds, but not other nudts now, so still epipens and inhalers at the ready.

Thanks for listening
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

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#2 GottaSki

GottaSki

    "The past is the past...I've got places to be."

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Posted 05 December 2012 - 07:21 AM

No one should have to be patronized in order to get proper medical testing -- so sad that many of us have experienced this -- it seems the pomposity rampant in the medical profession knows no boarders ;)

Happy to hear he was tested though. Great work Mom!
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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 Celiac Mindwarp

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Posted 05 December 2012 - 02:15 PM

Cheers :)
Just the nail biting wait then. And then working out how to get my daughter with no symptoms tested.

I mentioned that one of my concerns was that in children it is often behavioral changes rather than GI and she said (in that special tone we all know and love) 'well if we tested everyone with behavioral issues...'. I wanted to shout IF YOU DID YOU MIGHT CATCH MORE CELIAC BEFORE IT DOES SO MUCH DAMAGE!!!

Today I am really cross with doctors with little clue and no manners.
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image


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