Self-diagnosis And Being Taken Seriously

[lotusgem]

Hello all!

I'm new to the board, and hope that this topic hasn't already been covered ad nauseum.

Seven months ago, I was fortunate enough to discover that I have Celiac disease. It has been a problem my whole life (age 47), and the signs were abundant, yet no doctor (or dentist, I might add) was able to figure it out. I don't mean to blame them, entirely, because only we know the extent of our own body's individual symptoms and quirks. Yet, since my big discovery, I find that there is an amazing degree of ignorance in the medical community...at least in the USA. Anyway, everything pointed toward Celiac for me...Scottish heritage, short and skinny as a kid, very late menstruation, tooth enamel defects, muscle and bone pain, depression, bloating and stomach aches for no apparent reason. In fact, the stomach aches were bad and frequent enough that I was x-rayed at age 11, and nothing was found; no help for me. I figured out while in my thirties that I was allergic to casein, but it was another 12 years (!) before the rest of the health puzzle came together. Thank goodness for all the excellent posts on the intenet! I did all my research there, and am so grateful for the help. Something that I saw many times over was the admonition not to switch to a gluten free diet until getting a diagnosis. Well, this is easier (and cheaper) said than done. Actually, before I noticed that bit of advice, I had already made the switch, with near miraculous results in only two weeks. Then the insecurity started to hit me. I felt that maybe I could only know "for sure" if a doctor told me so. It seemed logical that that there would still be plenty of gluten in my system early on, and that a test might show positive at that point. So, I called our local doctors' offices, all three of them, and in each case, nobody had ever heard of Celiac Disease. I figured, fine; let's cut to the chase and go right to the gastroenterologist.

But when I called them, they told me that they would not take a patient without a referral! So our medical community, at least in my case, has been of no help whatsoever. Better, I thought, to just stay with what works, the diet, and forget the so-called "official diagnosis." I would be hard pressed to afford one anyway. Well now I find that when calling companies about the gluten status of their products, one question often comes up, which is if I have been diagnosed by a doctor. Am I the only one who feels as if the self-diagnosed are not being taken seriously? It really worries me. Why must we be made to jump through the consecrated hoops of the medical establishment?

[Carriefaith]

So, I called our local doctors' offices, all three of them, and in each case, nobody had ever heard of Celiac Disease.

That is really sad.....

Well now I find that when calling companies about the gluten status of their products, one question often comes up, which is if I have been diagnosed by a doctor

I think that if you feel better without gluten you should stay gluten free. Just tell people that when you eat gluten you get very sick. That's your business not theirs.

[kvogt]

Tell the nosey companies that your money can be quite easily spent on products from other companies that don't ask such impertinent questions.

[KaitiUSA]

Wow that is very rude of companies to even ask that. I have never had someone ask that but if they did I would tell them exactly what kvogt said....you can easily buy products from other companies.

That is very sad that 3 offices have never heard of celiac. I wonder how many misdiagnosed celiacs have walked out of those buildings.

[angel-jd1]

Possibly the person on the other end of the phone just was wanting to know more about celiac disease and didn't mean it as an insult to you. I seriously doubt that the question is something they are required to ask!! ha They were probably just curious as to how you get a diagnosis for it. It could have been your opportunity to educate them about Celiac. Next time, take the challenge and educate!!

-Jessica

[lotusgem]

Thanks, everyone, for your comments and good advice! True, it is perhaps not necessary to put a label on my illness. I like the idea of simply stating that gluten products make me very sick, so I can not eat them. I do have to wonder what would happen, if, for instance, a self-diagnosed Celiac had to go to the hospital and rely on the diet provided there. Would they honor a request for a gluten free menu if the doctor's "official" Celiac diagnosis were not part of the picture? See what I mean? It seems that problems could arise. As for medical ignorance, it amazes me that many doctors don't know of the condition, yet a surprising number of people on the street are aware of it. And how about food manufacturers? Our medical community really is not focused on helping people to help themselves. Maybe this sounds cynical, but I do feel that if there is no pill that can be prescribed for a malady, then many doctors can not be bothered to learn about it. I think, in their view, we are supposed to hand over the care of our own bodies to them, yet, coping with Celiac disease is entirely up to the individual. So it doesn't fit the culture. Actually, I do educate people whenever the opportunity presents itself. Folks are generally receptive, but as in the case of the food companies that wanted to know if I had a doctor's diagnosis, it felt more like they didn't want to be troubled to provide the information I requested if I couldn't validate my claim to being a Celiac. That's why it's a concern. With any luck, in the future, product labeling will eliminate the need to go through this drill. Thanks again, for your kind help. Talk to you again, sometime!

[darlindeb25]

well lotusgem---i dont have a doctor diagnosis and i dont need one--anyone that knows me knows i cannot have gluten---if i was in the hospital, there is no way they could make me eat gluten--besides my celiac sister would have their heads--i dont need a piece of paper saying anything--i went years without a diagnosis--i was told so many things and never any relief---gluten free is the way i will always be--plain and simple--------deb

[lotusgem]

Thanks, Deb, for the shot in the arm. As far as I'm concerned, I've got Celiac disease and wild horses couldn't get me to KNOWINGLY consume gluten-laden food. My concern is that people might not respect our needs without a bonafide Celiac pedigree. We are, in essence, asking others to go to special pains in order to fulfill a request for gluten free foods, if we are in a situation where we can't provide for ourselves. A person could say to themselves, "What they don't know can't hurt them," and take the easier course by serving gluten-tainted food. That's what I'm talking about. It's not that I don't basically trust people, because I do, but people can be lax if they do not sense genuine need. The greater issue overall, though, is that help seems less readily available to those of us that have not gone through the sanctioned channels.

[Guest gfinnebraska]

I am also an example of self-diagnosis. I WAS in the hospital over a year ago for surgery, and just told them I had celiac disease. No questions were asked... no explanation given. My OB/GYN didn't ask WHO diagnosed me... she just wrote in my chart that I was celiac disease and could not have gluten. She checked all my meds, etc. Was awesome about the whole thing. Of course, the staff at the hospital were clueless about serving me gluten free meals. I hardly ate due to not being hungry after a hysterectomy, but if I HAD been hungry, I would have starved! They asked me if I wanted soup, crackers, etc. HELLO??? Ha! Sigh... WE have a long way to go to make celiac disease known out there.

[jessicajane]

This is completely fascinating because I am in the process of trying to get a medical diagnosis...I know I feel better on a near-gluten-free diet, and I'll continue to eat this way regardless of whether I have an official diagnosis. However, if I have celiac disease, I know that 100% dietary compliance is critical because of all the damage to the small intestine and resulting malabsorption of nutrients and what that can lead to...not to mention the increased risk of cancer. So far, I have never had any vitamin or mineral deficiencies and have never been anemic.

So...if I have the diagnosis, I will get totally serious about following the gluten-free diet. If I don't have celiac disease, I will probably do less than my utmost because I won't be worried about damage...just some possible discomfort.

Here is my major question: are there gluten-related conditions other than celiac disease? or if you have 'problems with gluten' are you definitely suffering from celiac disease?

This forum is a real gift; there are so few sources of practical or reliable information to turn to.

Thanks to everyone for sharing their experience!!

[Carriefaith]

Here is my major question: are there gluten-related conditions other than celiac disease? or if you have 'problems with gluten' are you definitely suffering from celiac disease?

There is Dermatitis Herpetiformis which is a horrible rash that develops on the skin when gluten is injested. This is related to celiac disease and most people with DH have intestinal damage as well.

You can also have gluten intolerance or wheat allergy and not have celiac disease.

I don't think there are any others though

[lotusgem]

Hi again. Nebraska dweller, I feel reassured by your comments about whether or not you get respect as a self-diagnosed Celiac. Then again, I feel disappointed but not surprised about the,as yet, unenlightened staff at the hospital trying to make you well with gluten-filled foods! Tell me; Nebraska is wheat country, isn't it? I live in rural Idaho and a fair amount of wheat is grown here. Even as I write, there are wheat-berries all over our street from the farm trucks taking them to the flour mill. It makes me uncomfortable just knowing it's there. Do you have any problems associated with wheat farming in your area? Or maybe you live in the big city....

[ianm]

I am another self diagnosed sufferer. None of the many doctors I went to were of any help so I had no other option. All I know is that if I eat gluten I feel like crap. Don't eat gluten and I feel fine. That is really all I need to know.

Ianm

[lotusgem]

Dear Ianm,

you sound just like me in that doctors let you down and you made your own health decision based on your personal observations (and you are comfortable with that.) I can identify completely with your choice of words,"no other option" in describing your situation! None of the doctors in my town had ever even heard of Celiac disease. When I was talking over the phone with a nurse at one of the offices, she actually chided me for having not been in to see the doctor in over 2 years, like I'd been a bad girl, and they therefore perhaps wouldn't feel entirely inlined to help me. I said, "Gee, lucky me...I had no reason to have to go to a doctor!" She didn't seem to think it was very funny. No, I've never been much of a worshiper of doctors, so it is somehow fitting that I should have a disease that I diagnosed myself and can only be treated by myself. Thanks for writing, and stay well.

[gf4life]

I do have to wonder what would happen, if, for instance, a self-diagnosed Celiac had to go to the hospital and rely on the diet provided there. Would they honor a request for a gluten free menu if the doctor's "official" Celiac diagnosis were not part of the picture?

lotusgem,

I am technically a self-diagnosed celiac. I do have a diagnosis from Enterolab, but since that is not yet accepted throughout the medical field, I consider my self to be self-diagnosed. Anyhow, I wanted to share my experience. I recently had surgery that required a hospital stay. Needless to say, I was worried about the food situation. The surgery was not something that would require me to be on a restricted diet, so once I was awake and feeling up to it then I could eat. I tried to make arrangements with the hospital before hand, but they assured me that notifying my pre-surgery nurse when I got to the hospital would be sufficient. This made me nervous. Anyhow, long story short. I was able to get the gluten-free diet, and they did not contaminate me at all. They didn't ask for proof of a diagnosis. They took down all my "allergies" when I got there, which included all the medications, foods, and even the adhesive tape that bothers my skin! And they never messed up, except I did have to remind them about the tape every time they came in to draw blood. The only problem I had was late at night when I couldn't sleep because I was so hungry and had a spliting headache (probably from no food!), and all they could bring me that was gluten-free was these funky little Kosy Shack gelatin bowls that actually say gluten free on the label, but taste weird and have a texture like slime. I was thankful then that I had brought a bag of gluten-free snacks from home. But rice protein bars and fruit leather can only fill you up temporarily! So at least from my experience the hospital stay was not bad, and the lack of an official diagnosis wasn't an issue. I can also tell you that the only doctors we have found who would not accept the Enterolab diagnosis were the GI specialists (both regular and pediatric). All the other doctors have been very accepting of it, and it probably helps that they can see how much our health has improved on the diet.

On another note, I wanted to share this little tidbit. Today at church a friend say my daughter (she is almost 6) and commented on how tall she was getting. She looked at me (I'm 5 ft 2in) and asked where in the world did the tall gene come from! I said, probably from my dad who is 6 ft. Then I proceded to tell her a little about celiac disease and how the intestinal damage and corresponding malnutrition can stunt your growth, and since I wasn't diagnosed until I was 30 it was too late for me, but all my children have just been growing like weeds since they went on the diet a year ago! She was so happy that we knew what was wrong with us and that it wouldn't affect the kids growing bodies. She doesn't EVEN know how happy I am! I wish someone had figured it out when I kept going to the doctor for health problems when I was a kid. I am just really glad that my kids won't have to suffer for 30 years!!

God bless,

Mariann