Celiac Artery Aneurysm: Anyone else with same illness?

Posted by Jen @jurney01, Jul 23, 2016

Hello! I was recently diagnosis with a celiac artery aneurysm in June 2016. I underwent a embolization w/ coils procedure since the aneurysm had grown while in the hospital. I was trying to reach out to someone who suffered the same illness but have not been lucky. I would like to locate someone with my same illness. I would appreciate any help. Thank you

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

I will be seeing a Vascular Surgon April 28th to see what he thinks. He has worked with the Mayo Clinic in the past. Just happens to only be 100 miles from me. I will update what he tells me I need to do. The VA has authorized this to be looked into. Mark

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Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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@pwgrimes

Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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Hello @pwgrimes,

I found your post to be very informative. Could you share with me the type of test that diagnosed Celiac Disease? Was it a blood test or an upper endoscopy?

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Hi. Since it's been about 6 years how are you doing?

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@challengergt

I will be seeing a Vascular Surgon April 28th to see what he thinks. He has worked with the Mayo Clinic in the past. Just happens to only be 100 miles from me. I will update what he tells me I need to do. The VA has authorized this to be looked into. Mark

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@challengergt

I am glad to hear that you have an upcoming appointment with a vascular surgeon. Seeing this type of specialist should help you in making a decision on how to treat this problem and provide you with the information needed to understand this disorder better. Education is key!

Will you post an update after your appointment on the 28th?

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@hopeful33250

@challengergt

I am glad to hear that you have an upcoming appointment with a vascular surgeon. Seeing this type of specialist should help you in making a decision on how to treat this problem and provide you with the information needed to understand this disorder better. Education is key!

Will you post an update after your appointment on the 28th?

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Yes, I will be hoping they can give me informative information??

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@challengergt

Yes, I will be hoping they can give me informative information??

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Well, it was an informative appointment! Learned that 7 years ago a CT showed it was still 14 mm the same size! Seems my doctors did not have the time to look at my other CT's to check or let me know I had one?? Nothing like worrying having an emergency repeat CT done waiting to be seen about it for over a month to be told Oh it is the same nothing to worry about probably never be a concern for you!! Then when I asked what about my possible Heart attack 2 weeks ago and all my chest pain I am having? I was then told I don't do this you need to see a Cardiologist for your heart. As I was sitting there in chest pain I looked at him and said I just drove 100 mils to hear this? I need to see one before I leave being I am in a Hospital full of them in this floor?? See I have been blown off so many times I am holding my ground it is not funny to me it is my life I am dealing with. So now I get to drive 100 miles one way Monday to see one. A nurse checked me out and told me how to use the Nitro Pills I have at home? I will update this siter how this goes on Monday I do so worry there taking so long to help me it may be too late. I have had 4 chest crushing pain events and 1 event that I could not get off the floor for about 1 hour a few weeks ago! I am scared and just want answers on what is going on and what I can do about it.

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@pwgrimes

Celiac is a sneaky autoimmune disease. When your small intestine has its digestive filament ruined you do not digest food and your entire body is in a state of malnutrition. Every part of your body can be effected with no growth potential. It is a very serious disease and they are just now teaching doctors about it. It took me 8 years of pain and body dysfunction to finally have a smart Dr give me the test. The 6 gastroenterologists I have seen only did colonoscopies and all said your ok. None every mentioned Celiac. It is genetic and effects the ability of the entire body to grow new cells and function. Go to the Celiac Foundation web or the Mayo Clinic Celiac Clinic to learn the facts.

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I had the double blood test. Also I have the gene. You have to have that for the autoimmune disease. The allergy just gives you a temporary bowel problem. When I look back over my 72 years before the test I see all the symptoms . I always wondered why I had sickly times. I started out with constitution as a very skinny slow growing child. I would be exhausted after any time of exertion. I even had the enamel wear off my teeth. Had to have all crowns at 40. The first major symptom I noticed was the huge bloating like I was pregnant. As a adult I now have osteoporosis, even though I lifted substantial weights for 40 years and no one in my family has it. I have arteriosclerosis and had a 4 inch shunt in my thigh. Then there is peripheral neuropathy as well. I have had pancreatitis, all the doctors said I must be a drinker. And my gallbladder was nothing but a stone when removed. I have extreme Gerd. My digestive system does not work well and my bowel and rectal area do not coordinate. All of these are the result of living with malnutrition and not digesting food for my body and parts to grow and function right. I am one of the 30% who do not get complete relief from Going GF. I do not think I need the small intestine endoscopy to prove I have it. The Celiac leaves patchy areas of the intestine injured and a doctor needs to know the specific spots to get the samples. Since no Dr. I have been to in 11 years knows about the disease I don’t trust their testing. I am now having a very bad and painful time with rectal pain, probably caused by straining to alleviate constipation. I am in bed in pain waiting for an appointment with Colorectal Doctor who knows about anal fissures. They have made me wait 10 weeks and I can’t take pain med. The ER doctor knew nothing about Celiac and could not understand the problems I have. I waited 10 hours for nothing.
If I did not mention the Celiac Foundation web site they know the latest research.

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@challengergt

Well, it was an informative appointment! Learned that 7 years ago a CT showed it was still 14 mm the same size! Seems my doctors did not have the time to look at my other CT's to check or let me know I had one?? Nothing like worrying having an emergency repeat CT done waiting to be seen about it for over a month to be told Oh it is the same nothing to worry about probably never be a concern for you!! Then when I asked what about my possible Heart attack 2 weeks ago and all my chest pain I am having? I was then told I don't do this you need to see a Cardiologist for your heart. As I was sitting there in chest pain I looked at him and said I just drove 100 mils to hear this? I need to see one before I leave being I am in a Hospital full of them in this floor?? See I have been blown off so many times I am holding my ground it is not funny to me it is my life I am dealing with. So now I get to drive 100 miles one way Monday to see one. A nurse checked me out and told me how to use the Nitro Pills I have at home? I will update this siter how this goes on Monday I do so worry there taking so long to help me it may be too late. I have had 4 chest crushing pain events and 1 event that I could not get off the floor for about 1 hour a few weeks ago! I am scared and just want answers on what is going on and what I can do about it.

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What is it you have that's 14mm? I so hope you get the help and treatment you need.

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@marigail13

What is it you have that's 14mm? I so hope you get the help and treatment you need.

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My Celiac Artery is 14mm should be 7mm but there saying not big enough to fix yet. Seeing a Cardiologist Doctor tomorrow about all this.

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