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After a long, long ~40yr history of symptoms and not having a diagnosis, I am incredibly relieved to have a diagnosis that fits. I stumbled on a website about celiac disease that described some symptoms that sounded eerily familiar. I tried a gluten-free diet for a few weeks and didn't really "feel" anything, but then I ate a cookie--1 cookie--and I was so sick I thought my insides would certainly come out. Then, as if that were not enough, I ate a small amount of bread a few weeks later and I had different, but just as bad, gastrointestinal distress. So I immediately knew I was on to something. I requested the blood tests for celiac disease and a positive diagnosis was made. Here I am. I am now being referred to a specialists.

My question is about communication with the medical staffs. I received lab results that were not numerical, they only say "moderate to severe celiac disease." (TISSUE TRANSGLUTAMINASE IGA and GLIADIN IGA) Well, wouldn't it be important for me to know how bad is bad?

The information on celiac disease refers to an intestinal biopsy; should I expect this procedure? Obviously, I have to stick to a gluten free diet, but is a biopsy still typically done to confirm the degree of damage to my intestine? I am almost positive I've always had it, I grew up with joint aches that the Dr's just wrote off as arthritis and I was always that kid in class throwing up...slow in PE, always nauseated, then later problem pregnancies etc.

I'm trying not to think about the past right now, just to not get angry about how long it has taken and that I had to figure it out on my own. It really is sad. Like so many others in the Celiac community, I have started making announcements to family members in an effort to save someone else from the pain I've endured. That does make me feel MUCH better. Is it inappropriate to write to my former doctors and specialists to inform them of the diagnosis? I just want them to know so they'll be sensitive to the symptoms other patients could present. I don't want to get depressed, and I know talking through this early stage will help me.

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Hello and welcome.

The blood tests will not necessarily reveal how severe the disease is. BUT, you want to INSIST that you do get a written copy- you own the test results, make them give it to you, so YOU have a record of any changes if they re test you, and you also will have pain in the @$$ snotty medical professionals sometimes telling you you don't have "this," but you can then whip out your paperwork.

If you are being referred to a specialist, that person may be intending to then test you further by a biopsy to see what your insides actually look like - but here is the kicker - sometimes the biopsy comes back.... negative. Inspite of the positive bloodwork. This does not mean you are not at least gluten intolerant, but that they may not have taken enough tissue samples. You might also be tested for the genes that are more common to celiac. The "official" diagnosis of celiac is typically given if there is positive bloodwork and a positive biopsy. How you test out will not in reality affect how you actually react to eating gluten - most of the time there is an overlap, but not 100% of the time.

You need to call the doctor's office back and ask, are you being referred for a biopsy? Or do they already consider you "celiac, diagnosed?" Because if it's for a biopsy, you need to be still eating gluten when you do this. DO NOT let them make you wait for months piddling around, or tell you it is okay for you to start eating gluten free right now and then go to get tested months later. I have read on here and other places numerous incidents of one doctor saying go gluten free, and then the person doubts themselves, so they decide to restart the testing procedure for an "official" confirmation. The gastro doc is then telling people to just restart gluten consumption for a few weeks before the tests, and "SURPRISE!" the new bloodwork and the biopsy are now negative, and they now "officially" do not have celiac. But they are still sick, and now they don't feel like sticking to any diet seriously. Another wild goose chase ensues.

If your symptoms are both bad and matching that of celiac/gluten intolerance, and your bloodwork numbers are already high (and it sounds like it from getting that sort of test result) the doctor may be willing to diagnose you solely on that, especially if you then respond well to avoiding gluten. However, it's more likely they want a biopsy, the insurance companies may want these hoop jumps to be performed to consider testing you for yet other things in the future, or the doc is just being thorough.

Some people really need to be scared into diet compliance. Others (like me) get so ill on gluten, we are so motivated to avoid it we don't.

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After a long, long ~40yr history of symptoms and not having a diagnosis, I am incredibly relieved to have a diagnosis that fits. I stumbled on a website about celiac disease that described some symptoms that sounded eerily familiar. I tried a gluten-free diet for a few weeks and didn't really "feel" anything, but then I ate a cookie--1 cookie--and I was so sick I thought my insides would certainly come out. Then, as if that were not enough, I ate a small amount of bread a few weeks later and I had different, but just as bad, gastrointestinal distress. So I immediately knew I was on to something. I requested the blood tests for celiac disease and a positive diagnosis was made. Here I am. I am now being referred to a specialists.

My question is about communication with the medical staffs. I received lab results that were not numerical, they only say "moderate to severe celiac disease." (TISSUE TRANSGLUTAMINASE IGA and GLIADIN IGA) Well, wouldn't it be important for me to know how bad is bad?

The information on celiac disease refers to an intestinal biopsy; should I expect this procedure? Obviously, I have to stick to a gluten free diet, but is a biopsy still typically done to confirm the degree of damage to my intestine? I am almost positive I've always had it, I grew up with joint aches that the Dr's just wrote off as arthritis and I was always that kid in class throwing up...slow in PE, always nauseated, then later problem pregnancies etc.

I'm trying not to think about the past right now, just to not get angry about how long it has taken and that I had to figure it out on my own. It really is sad. Like so many others in the Celiac community, I have started making announcements to family members in an effort to save someone else from the pain I've endured. That does make me feel MUCH better. Is it inappropriate to write to my former doctors and specialists to inform them of the diagnosis? I just want them to know so they'll be sensitive to the symptoms other patients could present. I don't want to get depressed, and I know talking through this early stage will help me.

I would go for the biopsy if I were in your situation. I think it would be useful info to have if the damage to your intestines is severe (which it sounds like the blood test results might indicate). The endoscopy is pretty simple, and if you have insurance it will be covered. And yes, get a copy of your lab results.

I have often thought about contacting my former docs about my (probable) Celiac dx. I have been thru countless docs over the last 4 years at least (if not longer). I have atypical celiac symptoms, so if I can help somebody else by educating the doctors about what to look for, it's worth a shot, right? The worst thing that could happen is the doc throws the letter in the trash. :(

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