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Opinions Requested..gastro Doc Sent Me A Letter...


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20 replies to this topic

#16 designerstubble

 
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Posted 08 January 2013 - 11:52 AM

Where abouts are you Mindwarp?
I found C UK a bit strange on advise, and they really push the gluten-free products too! Only my tcm practitioner (he's brilliant) gave decent advise about food and cutting the crap. He's the one that told I could eat whatever I wanted! As long as it wasn't processed, sugar, diary or contained caffeine. Oh and he said I shouldn't eat bananas or potatoes. I've ignored the last bit of advice as it was just too much being veggie too. And i love potatoes.Can't have nuts or lentils in the house because of my sons severe allergy. It's tough!

But any way (oops ramble on!), even my local doctor looked strangely at me when I said I had cut out dairy!

C UK is also full of people that have healed quickly! Or at least seem to have because they say how great they feel and how great the gluten free products are.

I guess there will always be a minority (like me for example) that just don't heal quickly in 2-3 months?


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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


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#17 LFitts

 
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Posted 11 January 2013 - 12:25 PM

Pediatric GI told us this week that our daughter will take 6-12 months to heal and that there's no reason to look before then because it's invasive and they don't expect it to be miraculously fast. Hang in there!
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9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.


#18 designerstubble

 
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Posted 27 January 2013 - 01:00 AM

Lfitts, 6-12 months! That's exactly what I thought! Thanks for that. I do believe we are very behind on celiac here in the UK. I have had to spoon feed my docs bits of information from here. Some look at me like I'm crazy! (Especially when I say that I have cut out dairy and caffeine etc.)

They all tell me how lucky I am to live in the UK and have so many foods to choose from in the supermarket! Ha!
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#19 Seeking2012

 
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Posted 27 January 2013 - 08:37 AM

I don't get it. It takes up to 2 YEARS to show recovery. Sure, the numbers are going to go down during that time, but anti gliadin antibodies have a half life of 120 days. This means that every 120 days, your numbers will go down by half. Look up the wikipedia page on "anti gliadin antibodies;" this info is all there.

You didn't provide much of a timeline as to when your biopsy occured, when your diagnosis occured, when you stopped eating all gluten, etc so I can't say much other than that I've already said.
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- Diagnosed Celiac in May 2014. Gluten-free diet immediately

- Tested VERY high for thyroid antibodies May 2014 but T4, T3 and TSH are in "normal" ranges

- Have experienced chronic fatigue and decreased cognitive and memory function for years

- Sister has been diagnosed with Celiac, autism, schizophrenia and depression

- Mom, dad and other sister are "weak positives" for Celiac
- Mom has been diagnosed with type 2 diabetes


#20 designerstubble

 
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Posted 27 January 2013 - 04:07 PM

Thanks Seeking, I've just had a quick read and it's very interesting... Will look into it properly as it seems that I'm gonna get pretty much zero support by my doc.
(I was diagnosed with celiac Oct 17 with blood work.. Went gluten-free as they messed me around terribly, and I was so ill. They biopsied me dec 15, at about 8-9 weeks gluten-free, it confirmed celiac marsh stage 3.)
So they basically insinuated that because of the severe damage found at biopsy stage that I could not have been gluten free as I should have healed mostly or completely.

It's pretty hilarious really as they have only just sent me for my FIRST appt with a dietician!! Tomorrow! After 4 months?! Apparently I am being non compliant with the gluten free diet.

I'm looking forward to this appointment.


  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#21 Celiac Mindwarp

 
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Posted 28 January 2013 - 02:08 AM

I had a dietican appointment recently, and found that she didn't know much about celiac(e,g, said that I souldn't need vitamins etc as long as I was eating a healthy diet - er, never heard of malabsorbtion???) but she was helpful on a general level to make sure that what I am eating gluten-free is nutritionally balanced. I basically told her what I was going to eat, and we tweaked it a bit. They seem to be very keen on their 'balanced plate' approach. Very hit and miss here.

I don't touch the prepared gluten-free foods now. I kind of wish I could, for convienince, but I feel much better without. Still can't make out c-uk. I have a shiny new unopened directory beside me :)

Good luck with the appointment
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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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