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Surprised This Morning With Celiac Diagnosis, Not Sure What To Do
Started by rorenchan, Oct 04 2012 01:11 AM
45 replies to this topic
#31
GottaSki
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"Migratory flight complete."
Posted 04 November 2012 - 05:52 AM
I'm a bit confused. Are you waiting to go gluten-free until you see your GI for endoscopic results and schedule nutritionist? Given your blood test results, now that your endoscopy is complete, there is no reason to wait. Healing takes time - especially if you were undiagnosed for many years.
I encourage you to remove gluten now - if you haven't yet.
Let us know if we can help with your transition
I encourage you to remove gluten now - if you haven't yet.
Let us know if we can help with your transition
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
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#32
rorenchan
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Posted 04 November 2012 - 08:09 AM
I'm a bit confused. Are you waiting to go gluten-free until you see your GI for endoscopic results and schedule nutritionist? Given your blood test results, now that your endoscopy is complete, there is no reason to wait. Healing takes time - especially if you were undiagnosed for many years.
I encourage you to remove gluten now - if you haven't yet.
Let us know if we can help with your transition
I am fully embracing the gluten free diet as we speak! I asked my grocery store manager if they carry gluten free hamburger buns about a week before my endoscopy, and I explained to her that I have celiac disease and can't eat the regular buns, and the day before my endoscopy I went to stock up on food she told me they started carrying udi's! She ordered me the buns, the blueberry muffins, and the cinnamon rolls, and I got them all, they're so tasty!! Now I can eat turkey burgers, and for some reason that makes me really happy.
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
#33
GottaSki
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"Migratory flight complete."
Posted 04 November 2012 - 11:07 AM
I am fully embracing the gluten free diet as we speak! I asked my grocery store manager if they carry gluten free hamburger buns about a week before my endoscopy, and I explained to her that I have celiac disease and can't eat the regular buns, and the day before my endoscopy I went to stock up on food she told me they started carrying udi's! She ordered me the buns, the blueberry muffins, and the cinnamon rolls, and I got them all, they're so tasty!! Now I can eat turkey burgers, and for some reason that makes me really happy.
Oh that is great! Let us know how you fare
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#34
Celiac Mindwarp
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Posted 04 November 2012 - 11:31 AM
Brilliant
Mmm cinnamon rolls.
Good luck on the journey
Mmm cinnamon rolls.
Good luck on the journey
- 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 
Celiac.com - Celiac Disease Board Moderator
#35
rorenchan
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Posted 09 November 2012 - 06:31 PM
Endoscopy results are in and they are positive as expected. I got my official letter of diagnosis in the mail today. They didn't say what my marsh level is though. Is that something I have to ask for? My gastroenterologist didn't seem interested in seeing me in a followup, but instead has referred me to a nutritionist. I'm not sure who to ask to check my vitamin levels, or if I need to go back to my pcp from now on.
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
#36
MitziG
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Posted 10 November 2012 - 05:11 PM
What I meant was that POSITIVE blood tests don't lie! Positive is positive. But yes, false negatives are quite common. Sorry I didn't clarify!
#37
MitziG
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Posted 10 November 2012 - 05:13 PM
Oh, and to the OP, yes, follow up with your PCP, but be prepared to be proactive, cuz they are usually clueless. Ask for B12, Iron and Ferritin, Vit A, D, E and K to be tested, as all are commonly low in celiacs. Glad you got aN official diagnosis aT least!
#38
GottaSki
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"Migratory flight complete."
Posted 10 November 2012 - 05:21 PM
Welcome to the club - officiallyEndoscopy results are in and they are positive as expected. I got my official letter of diagnosis in the mail today. They didn't say what my marsh level is though. Is that something I have to ask for? My gastroenterologist didn't seem interested in seeing me in a followup, but instead has referred me to a nutritionist. I'm not sure who to ask to check my vitamin levels, or if I need to go back to my pcp from now on.
While it is best to be monitored annually by a GI that specializes in Celiac Disease - the follow up testing can be handled by your Primary. If you haven't had nutrient testing - give them a call or email to order:
CBC - Complete Blood Count
CMP - Complete Metabolic Panel
Bs, D, K
Iron, Ferritin, Copper and Zinc
My celiac doc ordered these along with full celiac panel at diagnosis, three and six months then annually after that. I've heard many others first check is at six months.
I've also seen others post that their docs add in A, C and Magnesium
But do ask your Primary for nutrient testing soon as it is necessary for many of us to supplement vitamins and minerals while healing.
How have your first weeks gluten-free been going? Any questions or frustrations we can help with?
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#39
rorenchan
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Posted 12 November 2012 - 11:25 AM
Thanks guys! I'll make sure to request those vitamin tests. Especially since today my gastroenterologist emailed me back to tell me that I have marsh stage 3. He didn't say a, b, or c though. He's mailing my pathology report today so I can take a better look at it in a few days 
.
.
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
#40
GottaSki
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"Migratory flight complete."
Posted 12 November 2012 - 03:51 PM
Thanks guys! I'll make sure to request those vitamin tests. Especially since today my gastroenterologist emailed me back to tell me that I have marsh stage 3. He didn't say a, b, or c though. He's mailing my pathology report today so I can take a better look at it in a few days
Not to worry -- the up side of Marsh Stage 3 is there is no doubt of the diagnosis - many struggle while healing as they question if removing gluten is really necessary.
Remember - you have already started healing by removing gluten, so whatever the report says - you can and will heal
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#41
rorenchan
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Posted 15 November 2012 - 05:24 AM
I got my lab results in the mail yesterday. It reads:
A. Duodenum, Biopsy, Second Portion:
- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Subtotal Villous Blunting.
B. Duodenum, Biopsy, Bulb:
- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Total Villous Blunting.
So I guess that means I'm marsh stage 3c in the bulb and 3b in further down.
A. Duodenum, Biopsy, Second Portion:
- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Subtotal Villous Blunting.
B. Duodenum, Biopsy, Bulb:
- Lymphocytic Enteritis with Intraepithelial Lymphocytes and Total Villous Blunting.
So I guess that means I'm marsh stage 3c in the bulb and 3b in further down.
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
#42
GFinDC
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A little farting never hurt anybody... :-).
Posted 15 November 2012 - 06:59 AM
Sounds like the gluten-free diet is the thing for you then. Time to get your gluten-free booties on and hit the gluten-free diet trail. Mostly whole foods will let you heal faster than lots of processed foods. I am sure you have heard the advice about taking pro-biotics and digestive enzymes already. Healing may take a while but it can start right away. We are here if you need advice or what not. We all hit the trail ourselves at one point, so we know it can be a rough one at times.
Mostly whole foods will let you heal faster than lots of processed foods. I am sure you have heard the advice about taking pro-biotics and digestive enzymes already. Healing may take a while but it can start right away. We are here if you need advice or what not. We all hit the trail ourselves at one point, so we know it can be a rough one at times.
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
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
#43
rorenchan
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Posted 27 December 2012 - 04:56 PM
It's been almost 3 months!
I'm starting to feel some small but marked improvements! I'm still very tired, bloated, and the pain of digestion usually knocks me out every meal, so I still can't eat with friends just yet, but my mood is better, and my appetite is strong. My hands feel warmer, and I don't clench my jaw when I sleep as much, which helps a lot with my headaches, ear, and neck pain.
As everyone said, going to the nutritionist was a joke. He didn't know what celiac disease was, and all he had were old pamphlets supplied by the celiac disease foundation from like 2004. Then he gave me a diabetes workbook, and told me to just eat as if I'm diabetic, but just substitute the wheat products for gluten free products. I was so mad that I wasted my copay money on that hack.
I've stuck to the gluten free diet without cheating, and I also take the celiact supplements, but I don't know how long I will stay on them because they are kind of expensive for just a 1 month supply. I'm not entirely sure if they're a pyramid scam yet or not, but I do like that it's an all-in-one kind of supplement, but I still need to take more potassium and calcium. I still need to get all my vitamin levels checked, and I hope my pcp can order the tests when I see her on the 10th for the first time since my diagnosis. Hopefully she isn't as clueless as the nutritionist. If she refuses the tests, I'm finding a new doctor.
I'm starting to feel some small but marked improvements! I'm still very tired, bloated, and the pain of digestion usually knocks me out every meal, so I still can't eat with friends just yet, but my mood is better, and my appetite is strong. My hands feel warmer, and I don't clench my jaw when I sleep as much, which helps a lot with my headaches, ear, and neck pain.
As everyone said, going to the nutritionist was a joke. He didn't know what celiac disease was, and all he had were old pamphlets supplied by the celiac disease foundation from like 2004. Then he gave me a diabetes workbook, and told me to just eat as if I'm diabetic, but just substitute the wheat products for gluten free products. I was so mad that I wasted my copay money on that hack.
I've stuck to the gluten free diet without cheating, and I also take the celiact supplements, but I don't know how long I will stay on them because they are kind of expensive for just a 1 month supply. I'm not entirely sure if they're a pyramid scam yet or not, but I do like that it's an all-in-one kind of supplement, but I still need to take more potassium and calcium. I still need to get all my vitamin levels checked, and I hope my pcp can order the tests when I see her on the 10th for the first time since my diagnosis. Hopefully she isn't as clueless as the nutritionist. If she refuses the tests, I'm finding a new doctor.
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3
Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.
#44
GottaSki
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"Migratory flight complete."
Posted 27 December 2012 - 05:43 PM
Wow time flies - glad you are seeing some improvements already
It is a good idea to check your nutrient levels - have we already suggested the list? Many docs just check iron and Vit D in women - celiac requires a few more.
Let us know if you have ?s and congrats on the improvements!
It is a good idea to check your nutrient levels - have we already suggested the list? Many docs just check iron and Vit D in women - celiac requires a few more.
Let us know if you have ?s and congrats on the improvements!
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#45
Celiac Mindwarp
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Posted 28 December 2012 - 08:16 AM
Great news on improvements, good isn't it? I'm about a month ahead of you now and really seeing benefits. I never Thought of the jaw thing, mine is better too. It is astonishing how many things you think of as normal, until they go.
I am off to a dietitian soon but not holding out much hope..
Have a fantastic new year
I am off to a dietitian soon but not holding out much hope..
Have a fantastic new year
- 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
Celiac.com - Celiac Disease Board Moderator
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