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KathiSharpe

How Essential Is Diagnosis?

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So here's what I'm wondering about.

If a radical dietary change (gluten-free) results in the eradication of symptoms and alleviation of problems, how essential is it to actually pursue a diagnosis?

(In other words, if you eat wheat and get sick, but abstain and get better, it doesn't take an MD to say, "Don't eat the stuff ever again")

Would it be wrong to simply say that you're diagnosed as having gluten intolerance when you're the one doing the diagnosing based on experience? (You could always say you were diagnosed by one who is a knowledgeable expert in such matters!)

I can see where some people would need an official dx - for example, college students forced to eat on campus - but if, say, you were admitted to the hospital couldn't you simply tell them, "I require a gluten-free diet"

If you were allergic to nuts and told them so, they wouldn't bat an eyelash, would they?

Thoughts?

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Unfortunately, there isn't a concrete answer to that question.

Personally, I am self-diagnosed gluten intolerant and have significant physical health improvements to prove it. I haven't been able to find a consistent doctor who will take me seriously, so I pursued it myself and have never looked back. Any doctor I see has no problem making sure the medication they prescribe is gluten free, same thing at the pharmacy. Most restaurants will take you seriously, but you have to want them to be serious about your situation.

You can't expect someone to take precautions when your well-being is in their hands unless you absolutely insist on it. I would say it's the same in any given situation..even if you don't have diagnosed Celiac Disease, it's easy to convince someone that what you have is just as serious: "I have a severe allergy to gluten", "I will get very, very sick if I eat gluten", etc. And more often than not, (I have found in my own personal experience) people will listen to you and will help you when you help them understand. I don't think a clinical diagnosis is necessary to make people listen.

Some people will never ever get a diagnosis even if they do have it, because the testing at this point in time is so unreliable and just not where it should be at this point. Research and education is getting much better, but we have a long way to go. In my mind, if it makes you feel bad, don't eat it. If you want to be respected and listened to, then make people understand! :)

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I felt I needed an official diagnosis for several reasons.

First, I wanted a health professional to acknowledge that I had a problem with gluten. My husband thinks my problem with gluten began after my son's diagnosis and that I was feeling sympathy pains, not a true reaction to gluten. That is not true at all. I had many symptoms of Celiac after my daughter was born, before my son's diagnosis. I chalked them up to stress (new baby, 7 year old having hard time dealing with not being only child anymore, new job 3 months after baby was born). After my son was diagnosed and I did research on Celiac I knew that's what I had too. It was difficult to convince my husband (and doctor!). The gene test convinced both my husband and my doctor that I really have Celiac.

The second reason why I wanted an official diagnosis is because when I tell people I don't eat gluten they always ask if I have Celiac too. When I said no they usually became confused, like why would I want to adhere to such a strict diet if it wasn't medically necessary. It was like I wasn't taken seriously.

I also needed to validate my symptoms. I like black and white. I like to be certain of something. If I have terrible stomach pains and diarrhea after eating gluten I wanted a reason why. I didn't like the idea of "maybe" I have Celiac or "maybe" it's gluten intolerance or "maybe" it's IBS. I have to know!!!

But, that's just me. I am very type A.

Edit: I want to add that my very excellent insurance is ending in October and that is another reason I wanted to pursure a firm diagnosis. I felt like it was now or never. I don't know what my new insurance will be like yet and I don't want to risk it.

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I don't have an official dx and don't feel the need for one. These days one never knows what insurance companies will do with medical histories anyway. I'm convinced and am sure it's celiac disease based on dietary response and the clearing up of DH. Iknow a dr never "said" it was DH but I do. It looked like DH and responds to the diet, reoccurs with a glutening and I just don't have rashes. I've never even had poison ivy!

I think each person has to make a personal desicion about being tested and looking for a dx. I probably would have sought testing if my financial situation had been different at that time. So I think either choice is OK; you just have to have peace about your decision.

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My belief is I had celiac disease from early childhood and having twins with multiple surgeries there after really set it off big time. It took 13 years from the start of serious/major symptoms before I recieved a diagnosis. During this time damage was being done to my body that was irreversable. So this does need to be taken into concideration. I'm looking at having to have open heart surgery even after 9 years of being gluten-free and having that confirmed biopsy. For what? The biopsy was done, not because of all the other auto-immune problems I had going on or the digestive problems. They had a pill for every symptom I had except the itchy blisters that even the injections of steriods was no longer fixing. My angry PCP sent me to a specialist because I wouldn't stay out of the poison ivy! The biopsy results can back very positive for DH associated with celiuac disease. If you have biopsy confirmed DH, not to mention the highest IGA counts John Hopkins had ever seen, then you have celiac and no endoscope is needed. All symptoms, except heart damage along with Osteoperosis has corrected on the gluten-free diet. No more itchy blisters or having to take Dapsone after 3 years of gluten-free diet. Yet I still have doctors who will tell me point blank that I do not have Celiac Disease, that DH is not connected with Celiac Disease and that I should go back to a gluten containing diet so they can do an endoscope if one is truly needed. I must add that if I even get a micro-organism of gluten at this point I'm on an ambulance ride to the ER to get IV due to dehydration that sets off my muscle cramps that leaves me laying on the floor unable to move. If you are responding to a gluten-free diet and are doing well what the heck does it matter? Why is it so darn important to others that you eat the gluten? To add to that the social pressure to try a little don't end with a biopsy confirmation either.

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BooParks, those are some crazy doctors that want you to eat gluten for a biopsy! My BIL had negative blood work, negative biopsy but positive DH rash and was diagnosed celiac. Like you, he gets very sick if he has trace amounts of gluten, he also suffers from gluten ataxia, anxiety, and panic attacks. I'm glad you don't listen to those fools!

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I have been debating this as well. I am also not officially diagnosed but am personally convinced through diet/solving of health problems to maintain a gluten-free diet for life. I had a college doctor who mentioned to me that gluten could be the source of my problems but said that she couldn't do any test from the university. This is after years of doctors through my insurance rule out infections and cancer (had an endoscopy) told me I had IBS and to stay away from dairy even though I had mysterious rashes and diarrhea among other symptoms. So, long story short, I'm now happy and working my way towars health.

But... My family, while mostly supportive of my diet and listening to me rant about gluten and the food industry, refuse to try the gluten-free diet themselves or get tested. My step-mom made an attempt for a week, kudos to her, for my 3yo half-brothers sake but decided it didn't make any difference for him. My mom commented to me that I should get tested and then she would think about it. My dad has many health problems (mostly related to his bowels and respiratory system) and goes to the doctor frequently. But, when we talk about it he just says he is already mostly Gluten free (only a couple of beers a day...). My siblings are all healthy but who really knows. I feel that if I got diagnosed that it would convince them to follow suit and to take it more seriously. And convince their doctors to take them more seriously when they ask about the tests. So now I'm waiting to graduate college so that I can finally have money and insurance... Also I really don't want to go back on gluten as a challenge diet and the resulting brain fog while dealing with senior year engineering classes...

So, in my mind there seem to be three reasons for getting diagnosed. Convince yourself, convince your doctors, and convince your family. It seems that if you can do these three than a diagnosis isn't necessary. Has anyone gone to the hospital without an official diagnosis and had issues with them not accepting your self-diagnosis?

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For me and my doctor it all came down to red tape with the insurance company. They wanted my doctor to follow a certain protocol for diagnosis or they would not cover anything related to Celiac's i.e. future complications, medications etc. I called the insurance company to confirm this, and then I went ahead and got the bloodwork (positive for the gene), and Endoscopy (finding out results on Thursday). :)

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When I went to my doctor my blood tests came back positive for celiac but my biopsy was inconclusive so I was not diagnosed with celiac. My doctor did suggest I go on a gluten free diet to see how I feel and I did feel much better. But, I also had other problems that were found out by testing that needed to be addressed. I was tested positive for h pylori for example that I needed to be on antibiotics for.

A lot of people have been self diagnosed and feel much better. It's all about what feels good to you and what your insurance company needs :-D.

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