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Blood work negative and just got word that the biopsy results do not indicate celiac.
I have anemia (require IV iron infusions at times), low B12 (injections monthly) and Vitamin D (take megadose weekly), lactose intolerance, hair loss, bloating, gas, diarrhea, abnormal periods, brittle nails, frequent canker sores, and I easily bruise.
I can't even take 2 sips of beer without becoming numb, bloated, and gassy (which is what triggered my PCP to get me tested for celiac).
I know there is no harm in going to a gluten free diet even if I am not positive for celiac - but the gastro states that she does not suggest this.
I'm actually really bummed that I'm negative. Any suggestions?
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Biopsy Negative :(
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#2
Brittany2 
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Posted 12 November 2009 - 10:53 AM
I entirely understand, that's the way I felt once my biopsy didn't show anything either. They just said it all looks completely normal. It's frustrating cause you feel like there should've been something at least! My blood work was negative also. Right after my biopsy that day I started gluten free, and it's only been a week and a half an its amazing that there such a difference in how I feel! Its best sometimes to listen to your gut feeling (ha opps to the pun!) There is so much to your intestines that they could've just overlooked all of the damaged spots. What I guessed for myself was that there are probably few, and with such a large area of small intestines that they easily overlooked it, and that with my age and how quickly I put the pieces of the puzzle together it was realized before extreme damage was done.
Do you know if they plan another biopsy, or other tests? Then I would understand why your gastro did not want you to go gluten free. If you can try it, your body will tell you maybe not quickly but it could heal overtime. Is your gastro familiar with celiac? If they're not maybe they just don't want to give that step until all other possibilities are explored. Yet gluten free is harmless especially if your eating as normal as you can in a still balanced diet getting your grains and fiber from rice, fruit and eventually gluten free pasta. In my opinion its probably the healthy way to go since your just cutting out all of the junk that everyone eats now-a-days (pastry, pre-processed foods, manufactured with artificial flavor items)
Other than beer, does anything else get you sick to? For me it was when I ate pizza, pasta, pancakes that got me the worst. Toast would sometimes.
Best to you! Hope this helps!
Do you know if they plan another biopsy, or other tests? Then I would understand why your gastro did not want you to go gluten free. If you can try it, your body will tell you maybe not quickly but it could heal overtime. Is your gastro familiar with celiac? If they're not maybe they just don't want to give that step until all other possibilities are explored. Yet gluten free is harmless especially if your eating as normal as you can in a still balanced diet getting your grains and fiber from rice, fruit and eventually gluten free pasta. In my opinion its probably the healthy way to go since your just cutting out all of the junk that everyone eats now-a-days (pastry, pre-processed foods, manufactured with artificial flavor items)
Other than beer, does anything else get you sick to? For me it was when I ate pizza, pasta, pancakes that got me the worst. Toast would sometimes.
Best to you! Hope this helps!
"There's nothing you can't achieve with a little hope, courage, determination and a destination to reach!"
#3
homemaker
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Posted 12 November 2009 - 11:10 AM
What is the harm in going Gluten Free? You have everything to gain...My bloodtests were negative and I did not even have the biopsy...My sister has Celiac and I was symptomatic...so I just took the leap...and I do feel better. My intestinal complaints are totally gone...
Constipation, Gas, Bloating, Abdominal Pain, Ataxia, Brain Fog, Joint Pain Headaches
Bloodwork Negative
Went gluten free 10/02/09
Immediate and Positive intestinal improvement with improvement in headache frequency
Enterolab results 11/23/09 (after one month gluten free)
Fecal Anti-tissue Transglutaminase IgA 10 units
Fecal Anti-gliadin IgA 9 units
Fecal Fat 1267 units
HLA-DQB1 Allele 1: 0201
HLA-DQB1 Allele 2: 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
Bloodwork Negative
Went gluten free 10/02/09
Immediate and Positive intestinal improvement with improvement in headache frequency
Enterolab results 11/23/09 (after one month gluten free)
Fecal Anti-tissue Transglutaminase IgA 10 units
Fecal Anti-gliadin IgA 9 units
Fecal Fat 1267 units
HLA-DQB1 Allele 1: 0201
HLA-DQB1 Allele 2: 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
#4
ravenwoodglass
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Posted 12 November 2009 - 11:49 AM
NurseJo98, on Nov 12 2009, 10:09 AM, said:
Blood work negative and just got word that the biopsy results do not indicate celiac.
I have anemia (require IV iron infusions at times), low B12 (injections monthly) and Vitamin D (take megadose weekly), lactose intolerance, hair loss, bloating, gas, diarrhea, abnormal periods, brittle nails, frequent canker sores, and I easily bruise.
I can't even take 2 sips of beer without becoming numb, bloated, and gassy (which is what triggered my PCP to get me tested for celiac).
I know there is no harm in going to a gluten free diet even if I am not positive for celiac - but the gastro states that she does not suggest this.
I'm actually really bummed that I'm negative. Any suggestions?
I have anemia (require IV iron infusions at times), low B12 (injections monthly) and Vitamin D (take megadose weekly), lactose intolerance, hair loss, bloating, gas, diarrhea, abnormal periods, brittle nails, frequent canker sores, and I easily bruise.
I can't even take 2 sips of beer without becoming numb, bloated, and gassy (which is what triggered my PCP to get me tested for celiac).
I know there is no harm in going to a gluten free diet even if I am not positive for celiac - but the gastro states that she does not suggest this.
I'm actually really bummed that I'm negative. Any suggestions?
I would suggest trying the diet anyway. You have nothing to lose.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#5
NurseJo98
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Posted 13 November 2009 - 03:48 AM
There are no plans for anymore tests that I am aware of. I have to go see the gastro on 12.3.09, not really sure why if my tests were negative.
I usually feel ill when I eat cakes, pies, oatmeal, breads, peanut butter, sips of beer, cereals, chicken wings (?), pancakes, waffles, pastas. This does not happen all of the time, but a majority of time I am rushing home after outings.
I plan on doing some gluten free shopping this weekend - this is all new, so will be reading a lot about what to buy! Thank you!!
I usually feel ill when I eat cakes, pies, oatmeal, breads, peanut butter, sips of beer, cereals, chicken wings (?), pancakes, waffles, pastas. This does not happen all of the time, but a majority of time I am rushing home after outings.
I plan on doing some gluten free shopping this weekend - this is all new, so will be reading a lot about what to buy! Thank you!!
#6
ravenwoodglass
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Posted 13 November 2009 - 05:49 AM
NurseJo98, on Nov 13 2009, 04:48 AM, said:
There are no plans for anymore tests that I am aware of. I have to go see the gastro on 12.3.09, not really sure why if my tests were negative.
I usually feel ill when I eat cakes, pies, oatmeal, breads, peanut butter, sips of beer, cereals, chicken wings (?), pancakes, waffles, pastas. This does not happen all of the time, but a majority of time I am rushing home after outings.
I plan on doing some gluten free shopping this weekend - this is all new, so will be reading a lot about what to buy! Thank you!!
I usually feel ill when I eat cakes, pies, oatmeal, breads, peanut butter, sips of beer, cereals, chicken wings (?), pancakes, waffles, pastas. This does not happen all of the time, but a majority of time I am rushing home after outings.
I plan on doing some gluten free shopping this weekend - this is all new, so will be reading a lot about what to buy! Thank you!!
Glad to hear you decided to give the diet a shot. I noticed your in PA. There are some Wegmans markets there if there is one near you shopping is easier with them because they label all gluten-free stuff with the Circle G. The exception to this is stuff like coffee which is only a single ingredient. The best way to start is with whole unprocessed foods. It may take some time to get used to the diet and some time to heal. Some of us notice a difference right away, I know I did, but some take a bit longer. Keep at it for at least 2 to 3 months with no cheating.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#7
Fiddle-Faddle
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Posted 13 November 2009 - 12:26 PM
There are no Wegman's in Pittsburgh , but the Giant Eagle supermarkets are quite good for Gluten-free.
In addition, there is an entire HUGE store devoted to food allergies at Soergel's Farm Market in Wexford, as well as a Whole Foods competitor called "Right By Nature" in the Strip district (at 24th and Smallman).
Good Luck!
, but the Giant Eagle supermarkets are quite good for Gluten-free.In addition, there is an entire HUGE store devoted to food allergies at Soergel's Farm Market in Wexford, as well as a Whole Foods competitor called "Right By Nature" in the Strip district (at 24th and Smallman).
Good Luck!
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