I've had many of the symptoms of Celiac disease over my lifetime.
Even though I've tested negative on the blood test and the EGD
(lower intestine test). Is it possible that I may still have the
disease or be gluten intolerant?
I'm new to the site so I was hoping to see if anyone has a similar
experience to mine.
Easy bruising (always been this way)
excess gas
abdominal pain
use to have canker sores in mouth constantly but not now
weakness, lack of energy
diareah sometimes emergency
I've been diagnosed with mild gastritis and esophagitis (non baterial).
I'd rather not take medicine on a regular basis.
Thank you to anyone with advice
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Upper Egd Negative But Have Many C. Symptoms Can someone have negative EGD and still be gluten intolerant
#2
Posted 22 November 2009 - 02:12 AM
Now is the time to try the diet. Testing for celiac misses far too many of us for many different reasons. You have nothing to lose by trying the diet. We are here to help and support you in that process. Ask any questions you need to and start your gluten free trial today. You need to be strict and give it at least a couple of months.
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)
#3
Posted 22 November 2009 - 06:31 AM
Sounds like me! I also had all of the above plus extreme body aches, HORRIBLE foot and lower back pain, vitamin D deficiency . . . the list goes on and on (see my signature).
Initially, my Rheumatologist gave me a "Celiac blood test," which came back negative. However, when I went to University of Chicago for a second opinion, they explained to me that he did not check my IgA, which is important.
Did the doctor check your IgA? Mine came back extremely high, indicating a strong gluten-intolerance but not necessarily Celiac -- some folks who are highly gluten-intolerant get as sick, if not sicker than some with Celiac.
I found it all very confusing at first. I found a book at the library that describes the testing process particularly well: Healthier without Wheat, by Dr. Stephen Wangen.
One mistake I made: I gave up gluten, felt better (despite making some mistakes), then when I went for my second opinion, I was told I needed to eat gluten for many weeks in order to be tested.
Going back on gluten was hell. It would have been much easier if I hadn't given it up first, and I probably would have had an even more accurate reading. During the challenge, I ate only one slice of bread per day. It was all I could handle. Augh!
If you want to go through the tests, you might not want to give up gluten just yet.
However, many people opt to just do the diet and not go through all the tests, particularly if they don't want weeks of sickness or if they are concerned about insurance coverage. For me, I wanted to know.
That said, I'm not convinced that the tests always show the results they should. Ravenwoodglass makes an excellent point.
For example, I spoke with a man who owns a gluten-free store. His daughter has the gene, but he and his wife tested negative. His wife can't eat gluten. Weird . . . and I hear stories like that all the time. Very confusing.
Whichever way you go, we are here to support and help you, just as Raven says. Glad you're here.
Initially, my Rheumatologist gave me a "Celiac blood test," which came back negative. However, when I went to University of Chicago for a second opinion, they explained to me that he did not check my IgA, which is important.
Did the doctor check your IgA? Mine came back extremely high, indicating a strong gluten-intolerance but not necessarily Celiac -- some folks who are highly gluten-intolerant get as sick, if not sicker than some with Celiac.
I found it all very confusing at first. I found a book at the library that describes the testing process particularly well: Healthier without Wheat, by Dr. Stephen Wangen.
One mistake I made: I gave up gluten, felt better (despite making some mistakes), then when I went for my second opinion, I was told I needed to eat gluten for many weeks in order to be tested.
Going back on gluten was hell. It would have been much easier if I hadn't given it up first, and I probably would have had an even more accurate reading. During the challenge, I ate only one slice of bread per day. It was all I could handle. Augh!
If you want to go through the tests, you might not want to give up gluten just yet.
However, many people opt to just do the diet and not go through all the tests, particularly if they don't want weeks of sickness or if they are concerned about insurance coverage. For me, I wanted to know.
That said, I'm not convinced that the tests always show the results they should. Ravenwoodglass makes an excellent point.
For example, I spoke with a man who owns a gluten-free store. His daughter has the gene, but he and his wife tested negative. His wife can't eat gluten. Weird . . . and I hear stories like that all the time. Very confusing.
Whichever way you go, we are here to support and help you, just as Raven says. Glad you're here.
Very High Gliadin - Biopsy, Gene Test Neg. Diagnosis: Non-Celiac Highly Gluten Intolerant.
Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).
There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!
Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt
Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).
There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!
Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt
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