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Ok, Im Confused.
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8 posts in this topic

My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry

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I'm not an expert in the blood tests. The ones developed ten to 15 years ago were not as specific as some available today. There is one (somebody will know which it is) which is highly specific for celiac disease. A positive there is 99% accurate.

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My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry

If your anti-endomysial antibodes are positive, you can conclude that your diagnosis is Celiac Disease. No biopsy would be needed.

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My dietitian and all I have read says the endoscopy biopsies are required to confirm a celiac disease diagnosis. My GI doctor's office called and said I don't need the endoscopy after the blood test panel confirmed Celiac Disease. They said stay on gluten free (WBOR). I don't go back to see them till Nov. 5th to find out how I am doing.

Confused.

Terry

You have a good GI. Follow their advice. Plus if you are already gluten free the biopsy has a good chance of being a false negative.

I hope you heal quickly but for some of us things can be up and down for a bit. Hang in there and ask any questions needed.

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Go with what you GI is saying if you are comfortable with that. My youngest son is diagnosed without a scope/biopsy.

If you still want to do the scope/biopsy, be aware that you have to be eating gluten to get the most accurate biopsy for celiac. The scope does look at the esophagus and stomach also. Biopsies are taken from both places to rule out other things like barretts esophagus, ulcers, inflammation , cancer, parasites, H pylori, etc. I'm not mentioning this to scare you, its just part of the routine scope process.

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It's my understanding that a number of doctors now consider symptoms and a positive blood test all you need for a diagnosis. And improvement on the diet would confirm it.

richard

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Thanks for all your feedback. I know I will need assistance in the future coping with this. Feeling better, I have less blotting staying away from gluten and dairy. Coming to the realization that it may take a long time for my digestive track to heal.

Terry

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Good luck Terry. :) You'll probably notice some improvements within a week or two and then other improvements will slowly show up... It does take a while.

I wanted to add that I was diagnosed based on positive EMA and ttg IgA, and my symptoms. No endoscopy neede, which is great since I like to avoid procedures like that. :)

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
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