Presumed celiac, due to multiple-fracture osteoporosis (despite doing EVERYTHING recommended to strengthen bones all my life), and Hashimotos thyroiditis. I have never had an intestinal villus biopsy, mainly because I had the wrong gastroenterologist for my needs. She was very much by the book (Unwilling to think outside the statistics of disease she learned in med school) and stuck 20+ years in the past, IMO. Going to a new GI doc, soon.
I've had celiac disease for 40 years, and I am a severe celiac. But the disease is a VERY easy illness to live with if you stick to the gluten-free diet. Wishing you all the best...
Most of my immediate family members have celiac disease, including myself. My son was diagnosed after seeing many drs. He was in danger of having major health issues. He was dying of malnutrition by the time he finally found a good dr. who took one look at him and said "you have celiac disease" without even testing. Its been a challenge for all of us most of our lives. We have health issues that go along with this disease. We do our best to try and stay positive.
Janie -
I have had Celiac Disease for 40+ years. First 10 years struggling and not understanding what was happening. About 30 yrs ago I started to become gluten-free with the more careful I was the better I felt. But about 20 yrs ago a cascade of ramifications from the damage that had happened on those first 10 yrs began to develop.
Anemia was the first symptom. Next was Asthma and then Histamine Intolerance, Adrenal Fatigue, Arthritis, Heptiformus dermatitis, and a few additional small problems.
Not trying to scare you, rather give you a frame of reference at the potential problems that gluten caused damage can do to your body’s proper functioning.
Chris47 -
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
Good morning. I was diagnosed with MALS about two weeks ago. In order to have a true diagnosis you need to have a special ultrasound done at a vascular surgeons office. As well as a cta a cat scan with contrast of your stomach. I have a consult with my surgeon in early March. The only cure is surgery. And there are 3 types. You can look up MALS foundation. It will give you so much information about this rare disease. This is the same as celiac artery compression syndrome. What symptoms do you have? There is help! Thank God. If you have any questions please feel free to ask. You’re not alone!
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
Hello Kathyhg, My understanding is that the gold standard of diagnosis of celiac disease, with having an endoscopy, is no longer absolutely necessary. The blood test can verify it.
I was diagnosed in 2005 and having an endoscopy dx was definitely the deal. Having the endoscopy did show that I also had microscopic colitis and that has been helpful for me to know that.
Since you already have started eating gluten free you would need to eat gluten again for quite a while (different times are stated, 1-3 months) to verify that dx in an endoscopy. Most people don't want to go through that. I would suggest you see a gastroenterologist who is well versed in celiac disease. There have been numerous times I have seen mine to answer questions about my health. It is reassuring to have someone you can rely on.
Organizations to reference, celiac.org, gluten.org, celiac.com, beyondceliac.org. Look up Alessio Fasano, Peter H. Green. Hope that is helpful.
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
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Presumed celiac, due to multiple-fracture osteoporosis (despite doing EVERYTHING recommended to strengthen bones all my life), and Hashimotos thyroiditis. I have never had an intestinal villus biopsy, mainly because I had the wrong gastroenterologist for my needs. She was very much by the book (Unwilling to think outside the statistics of disease she learned in med school) and stuck 20+ years in the past, IMO. Going to a new GI doc, soon.
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2 ReactionsI've had celiac disease for 40 years, and I am a severe celiac. But the disease is a VERY easy illness to live with if you stick to the gluten-free diet. Wishing you all the best...
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Helpful -
Hug
4 ReactionsMost of my immediate family members have celiac disease, including myself. My son was diagnosed after seeing many drs. He was in danger of having major health issues. He was dying of malnutrition by the time he finally found a good dr. who took one look at him and said "you have celiac disease" without even testing. Its been a challenge for all of us most of our lives. We have health issues that go along with this disease. We do our best to try and stay positive.
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Hug
4 Reactions@janiewhitemoon
https://connect.mayoclinic.org/discussion/celiac-and-malabsorption/
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3 ReactionsJanie -
I have had Celiac Disease for 40+ years. First 10 years struggling and not understanding what was happening. About 30 yrs ago I started to become gluten-free with the more careful I was the better I felt. But about 20 yrs ago a cascade of ramifications from the damage that had happened on those first 10 yrs began to develop.
Anemia was the first symptom. Next was Asthma and then Histamine Intolerance, Adrenal Fatigue, Arthritis, Heptiformus dermatitis, and a few additional small problems.
Not trying to scare you, rather give you a frame of reference at the potential problems that gluten caused damage can do to your body’s proper functioning.
Chris47 -
I was recently diagnosed with celiac disease after a blood test for Tissue Transglutaminase Ab Iba, on which my score was 75.0 or HI/positive (under 12 is normal?).
I’ve heard that a biopsy is the gold standard for diagnosing celiac disease but I’ve already started eliminating gluten from my diet and I’d have to eat gluten again before the test. I’ve also heard that the blood test is adequate to diagnose celiac, along with diet change and sort of the day to day evidence related to following a gluten free diet.
It’s been recommended to me that I get a referral to a gastroenterologist to do any other testing that I might need and to assist with management.
I’m hopeful that others who may have experience with this can offer some suggestions and/or reference a thread here that might give me more information. Is the biopsy necessary? Are there other tests that are needed, considering late onset of this disease?
Thanks in advance.
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1 ReactionGood morning. I was diagnosed with MALS about two weeks ago. In order to have a true diagnosis you need to have a special ultrasound done at a vascular surgeons office. As well as a cta a cat scan with contrast of your stomach. I have a consult with my surgeon in early March. The only cure is surgery. And there are 3 types. You can look up MALS foundation. It will give you so much information about this rare disease. This is the same as celiac artery compression syndrome. What symptoms do you have? There is help! Thank God. If you have any questions please feel free to ask. You’re not alone!
Hello Kathyhg, My understanding is that the gold standard of diagnosis of celiac disease, with having an endoscopy, is no longer absolutely necessary. The blood test can verify it.
I was diagnosed in 2005 and having an endoscopy dx was definitely the deal. Having the endoscopy did show that I also had microscopic colitis and that has been helpful for me to know that.
Since you already have started eating gluten free you would need to eat gluten again for quite a while (different times are stated, 1-3 months) to verify that dx in an endoscopy. Most people don't want to go through that. I would suggest you see a gastroenterologist who is well versed in celiac disease. There have been numerous times I have seen mine to answer questions about my health. It is reassuring to have someone you can rely on.
Organizations to reference, celiac.org, gluten.org, celiac.com, beyondceliac.org. Look up Alessio Fasano, Peter H. Green. Hope that is helpful.
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Helpful -
Hug
2 ReactionsI definitely sympathize with you. I was diagnosed with Crohn's disease at age 69! Not how I expected my retirement to go!
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1 ReactionI didn’t think my retirement would go this way either!