How Many People Self-Diagnose?

[JenniBea]

I'm currently going through all the poking and prodding to get a diagnosis. I am certain that I have celiacs, because of the violent reactions to wheat along side the long list of other symptoms following that.

I talked with my GP and she did a blood test. And ordered an endoscopy. My blood test came back negative, but she said this is common, especially if someone has noticed that wheat is trouble-making and has layed off it for a break. Which I did here an there, due to being sick of being sick!!

Anyway, she wants me to carry on with a 'normal' diet for 6 weeks, then re-test.....Sigh.

Today, I went along for my endoscopy, or so I thought. It was just a case of talking to another arrogant Dr. Who wanted to diagnose me straight away as being hypercondriac. Finally convinced him to order the endo that had already been promised previously, for in 4 weeks. I've had months of feeling rubbish, and spend way too much time with my head down the toilet. Also i have 2 toddlers that like it when I'm not horizontal on the couch dying...!! It's quite full-on. Should I just go with my gut feeling (the one I get when I don't have gluten in it!!) and just stop with it all? I've had enough now. Is an official diagnosis really worth the hassle that goes with it? I was adamant that it would be before today, but 6 more weeks is a big ask!! Advice please?!

[kareng]

One reason for an " official" diagnosis would be for your kids. If you are diagnosed with Celiac, they should blood test your kids every two or three years. Also, if the kids have symptoms, they are more likely to think of Celiac. This might spare them several years of suffering and not growing, etc.

Otherwise, you don't really need a diagnosis to eat whatever you want to eat or not eat.

[JenniBea]

That is the one solitary reason I can think of to carry on with this, to try and save them from it all. But if I notice that they show signs, wouldn't I be in the same situation with them anyway?! I could just put them on the gluten-free diet I'm dying to start with already, or put them through the diagnosis process to get it in black and white for them anyway? Dr's seem pretty reluctant to help anyone out with this for most people I have read about anyway!! Confusing stuff, isn't it?!

[bartfull]

I am self-diagnosed. Sometimes I wish I had an official diagnosis simply so I could find out if I am truly healing. I noticed a big improvement after going gluten-free, but then developed other intolerances. For a while there it seemed EVERYTHING was giving me trouble. It would be nice to know whether these other symptom causing foods were damaging my gut too, or if it's just that I haven't healed yet.

It wouldn't change the way I live and eat. It would just take away some of that background worrying that niggles away at my peace of mind.

[Skylark]

I am self-diagnosed. Sometimes I wish I had an official diagnosis simply so I could find out if I am truly healing. I noticed a big improvement after going gluten-free, but then developed other intolerances. For a while there it seemed EVERYTHING was giving me trouble. It would be nice to know whether these other symptom causing foods were damaging my gut too, or if it's just that I haven't healed yet.

It wouldn't change the way I live and eat. It would just take away some of that background worrying that niggles away at my peace of mind.

You put that really well. I'm the same way. Gluten is poison for me, but now that I know I have Hashimoto's I really wish I knew whether I had celiac as well. It would help me evaluate the risk for more autoimmunity. That niggling doubt is sometimes hard to live with.

That said, I'm not going to gluten challenge to find out. Two doctors in a row told me it wasn't worth challenging because it's hard to get the positive blood tests. Poisoning myself for 6+ weeks and then taking months to recover for an iffy chance at a blood test is just not a tradeoff I'm willing to make.

[rosetapper23]

I'm self-diagnosed and began eating gluten free immediately upon figuring it out. I felt so much better, I then took my 15-year-old son to the doctor to get HIM tested for celiac, since he'd always had the same symptoms that I did. His blood test was positive, and that was good enough for me. When I presented my case to a gastro-enterologist, he agreed with me 100% because I had had such a classic case since I was a child. He apologized on behalf of all the doctors at the HMO who had missed the correct diagnosis during all those years. In my case, I'd already gone gluten free for several months, so the blood test was negative....but I'd been plagued with a rash that is obviously Dermatitis Herpetiformis since I was a teenager, and now I had the answer to that mystery, too. There does not seem to be any doubt among my doctors that I do, in fact, have celiac. Although my doctors failed me for 47 years, I must admit that I'm pleased that they could examine the symptoms, observe that the symptoms are relieved by a gluten-free diet, and then admit that they missed an obvious diagnosis. My mother had always suffered from the same symptoms, too, so she switched to a gluten-free diet and feels 20 years younger now. Her brother says that he can't tolerate gluten and gets an itchy, blistery rash on his lower legs when he accidentally ingests it. My son also gets DH when he slips up. Yes, the doctors missed a whole bunch of obvious diagnoses!

In the case of your children, that's an individual situation for which you'll need to consider all of the ramifications. Personally, I would wait until they show symptoms and then have them tested at that time. If you find a good pediatrician, that person might be willing to test them every few years if you can convince him/her that you either have celiac or gluten sensitivity. Really, there are doctors who diagnose celiac simply on the symptoms and the alleviation of symptoms through diet. I know that I could NEVER stand a six-week gluten challenge--I'd need to be hospitalized. Also, when I've seen new doctors and tell them I have celiac, they never ask me for proof--they just write it in my chart. Take your kids to a new pediatrician and tell him/her you have celiac and you want your kids tested, too.

[JenniBea]

I'm not saying all doctors are useless, but you guys have helped me much more in many ways than all those I has visited in their surgeries and offices so far!!

It seems there are many reasons to suck it up and chase that diagnosis, but as you all know and have told me, the guarantees are few, and my drive for it is getting pretty low by now. Maybe I'll feel a bit more optimistic if I sleep on it. Thank-you for your replies and advice!

[squirmingitch]

I am self diagnosed but I have no children to consider in the mix. I have Dermatitis Herpetiformis. I had suffered so long with the insane itching that the very moment I figured out what it was & found this board & further confirmed in my own mind what it was I went gluten free. I knew the chances of getting a positive celiac panel for those of us with dh were slim to none that is IF I could convince a doc to run the panel. There are no dermatologists in my town & the nearest ones are 50 miles away 1 way & have no experience biopsying dh. I went gluten free & that sealed the deal for me. I do not regret it for one minute. And I will NOT gluten myself to prove to any doctor that I have celiac disease!

Then my husband presented with dh. We talked long & hard about getting a dx for him before he went gluten free. We decided it was not worth going through all the pain & waiting through all the Dr. visits until you can finally get tested, glutening yourself all the while & making thee road to dh healing that much longer. He went gluten free without an official dx.

I will mention that we both had signs & symptoms of celiac earlier in our lives but once the dh began to present then almost all of those symptoms seemed to fade away & the dh took over.

[Bwarning3]

As a nurse I hesitate to diagnose my self but I do know I have a Gluten Intolerance per a blood test. At that time I did not have the specific blood test for celiac disease. I wish I had know more because what I know now makes me think I have celiac disease. But the symptoms I have are the ones most doctors don't think as celiac disease. Over the past several years I have gone to the Dr for one complaint or another but because they were all happening at different times I didn't put it together. I have always had fatigue and hypoglycemia since a child. A few years ago I was tested for Meniers and I have had A1C done for blood sugar check and a couple years ago I started having chronic headaches. They would come and go all day. It was awful, I was taking motrin, naprosyn and even xanax to help. I did find out I have mild sleep apnea but that did not cure everything, at the same time I found out I had Gluten Intolerance. I went gluten free, sort of. I was much better for a while and then I slipped back into regular food and then my symptoms came back and worse along with constipation. I really believe I have celiac disease and I think my 10 dd has it too or least leading up to it. I did have her tested but she tested negative but did and wheat allergy per RAST Immunocap test. She does have stomach problems at times and her stools can be very large. She has ADHD symptoms and very high strung. She also has back molars with enamel erosion. My mother in law has IBS and fibro and my grandmother had Rheumetoid arthritis. So we have some auto immune on both sides of the family.

I guess what I am saying, more than likely I have celiacs but I hesitate to be confidant about it.

[roxieb73]

Even if you go through the testing nobody can promise you a diagnosis. I am through the testing finally and the best I can hope for is an Autoimmune Gluten Sensitivity. I say save yourself the hell. I did it and it isn't worth it! I am only day 2 gluten free and already feeling better. The tests that really helped me were genetic testing and vitamin levels. Genetic testing showed why the other tests were negative but confirmed a "gluten sensitivity" and the vitamins proved it wasn't in my head! All numbers were low my Vitamin D was scary low! Those tests don't require you be eating POISON! I honestly believe if I had gone six more months I would be in a wheelchair or dead. Very happy to be on the right path. IMHO

Roxie

[GlutenFreeAustinite]

I was self-diagnosed for a year and a half. Then I began eating gluten again so I could get an official diagnosis. It's been hell for the past two months, but it's worth it for me to know. We heavily suspect my grandmother had it, and I want my future kids to know there's a risk too. Also, the housing/food system at my school has to accomodate me if I have an official diagnosis, which I'm hoping to have in a few weeks, and I'd rather not pay $1500 a semester for a meal plan that I can't eat.

That being said, even if the celiac tests came back negative, I would have stayed gluten-free anyway. I know it makes me sick, regardless of the name of my condition.

However, my best friend is self-diagnosed and perfectly content to remain that way. She has a ton of other intolerances, but she feels so much better without gluten that it's not worth it for her to test.

[Skylark]

Even if you go through the testing nobody can promise you a diagnosis. I am through the testing finally and the best I can hope for is an Autoimmune Gluten Sensitivity.

Autoimmune gluten sensitivity is the definition of celiac disease. You are getting some really weird medical advice.

[beachbirdie]

I'm in the netherworld between self-diagnosed and doctor diagnosed.

My doctor was content to call it celiac based on one positive blood test but I know other docs would not diagnose me without a biopsy and would probably dismiss my doc's call, blaming my positive test on my Hashimoto's disease.

I have symptoms(though not the "classic" ones), one low-risk gene, and gluten-free seems to be resolving my symptoms.

It's enough for me.

[ayndim]

I was officially sent to a GI doctor because of elevated liver enzymes. I was very sick and could barely eat and had a rash on my neck that looked like pimples and more on my scalp. The only things I could keep in me were things that didn't have gluten in them. My celiac panel was high but not within range to diagnose with celiac but my doctor was concerned because by that time I had been gluten-free for over a month. So off I went to the GI. By the time, I got to the GI my liver enzymes were normal and I was feeling better. I had been gluten-free for almost two months. He put me back on the gluten and wanted to do a biopsy. I asked him what would happen if it was negative and he said he was going to diagnose me with celiac anyway because the digestive issues were resolved, the rash was gone and my liver enzymes were normal on the gluten-free diet. I made it all of half a day on gluten before getting sick. Day two was awful. I went back to the GI and he diagnosed me with celiac.

I wondered if I was truly celiac but then I got sick on two different ocassions. Both time, I went over the labels and sure enough it had gluten in it. The first time I was thinking maybe it could just be a wheat allergy but the second time it was barley. Who knew Mrs. Butterworth's had barley. What a stupid thing to put in syrup.

[roxieb73]

Autoimmune gluten sensitivity is the definition of celiac disease. You are getting some really weird medical advice.

They say that because my Gene testing was DQ1 and my rash was inconclusive for DH. It is either DH or Lichen Planus both of which are auto immune reactions to gluten but Lichen Planus isn't diagnosed as Celiac.

[benXX]

Should I just go with my gut feeling (the one I get when I don't have gluten in it!!) and just stop with it all? I've had enough now. Is an official diagnosis really worth the hassle that goes with it? I was adamant that it would be before today, but 6 more weeks is a big ask!! Advice please?!

Please don't listen to people encouraging you not to go for an official diagnosis.

For one, when officially diagnosed, it is so much easier to follow a lifetime diet and to convince the people around you about it.

Secondly, being diagnosed, you will get the necessary follow up tests for the possible effects of mal-absorption.

Thirdly, you might have some other auto-immune disease i.s.o. celiac, self diagnosing might put you on the wrong track.

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .

Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.

[Skylark]

Please don't listen to people encouraging you not to go for an official diagnosis.

For one, when officially diagnosed, it is so much easier to follow a lifetime diet and to convince the people around you about it.

Secondly, being diagnosed, you will get the necessary follow up tests for the possible effects of mal-absorption.

Thirdly, you might have some other auto-immune disease i.s.o. celiac, self diagnosing might put you on the wrong track.

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .

Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.

You mean, for YOU it's easier to stick to the diet. I'm self-diagnosed and I have no problems sticking to the diet. I also have no issues getting proper medial care or convincing my friends/family that I need really clean food. It's pretty obvious when a lifetime of GI symptoms, canker sores, psych symptoms, and anemia all go away after a year gluten-free.

Gluten challenges can be really dangerous. You got off easy. I was specifically instructed by my doctors not to challenge. In my case I risk serious psychiatric illness from the effects of gluten on my mind. You can also trigger autoimmune flare-ups and we had a board member who got so sick she needed hospitalization when she challenged. A gluten challenge isn't something to undergo lightly.

[Skylark]

They say that because my Gene testing was DQ1 and my rash was inconclusive for DH. It is either DH or Lichen Planus both of which are auto immune reactions to gluten but Lichen Planus isn't diagnosed as Celiac.

Your doctor is splitting hairs. You can be celiac with DQ1 and some experts argue that gluten-sensitive lichen planus is a skin manifestation of celiac. If rash goes away off gluten I'd consider myself celiac.

[IrishHeart]

I went on a 30g gluten/day challenge for 2 months (=40g gluten powder or 12 slices of bread) and yes, it was hell, but it was worth it .

Doctors do take me serious and I'm getting all the follow-up tests needed and help I want. Plus I'm super motivated to stay on the diet.

Hang in there, the gluten challenge will soon pass. Trust me, it's worth it.

If I tried a gluten challenge right now, within a few days, I'd be in the hospital, or a mental heath ward or dead from driving my car off the road. These are the ramifications of gluten ingestion for me.

My GI doctor would NEVER suggest such a thing to his patients who exhibit serious neurological symptoms.

Not everyone can handle it.

In fact, some docs WILL DIAGNOSE if the gluten challenge becomes life-threatening.

You said you cannot tell when you have been glutened by accident, right? (I read this on the other thread "How bad is cheating")

So, maybe YOU needed a DX via gluten challenge to keep yourself on the straight and narrow, but many do not.

Should they get a "proper DX"? Yes, if it's possible!!

But, for some, it is contraindicated.

[benXX]

You mean, for YOU it's easier to stick to the diet....

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.

Gluten challenges can be really dangerous. You got off easy. I was specifically instructed by my doctors not to challenge. In my case I risk serious psychiatric illness from the effects of gluten on my mind. You can also trigger autoimmune flare-ups and we had a board member who got so sick she needed hospitalization when she challenged. A gluten challenge isn't something to undergo lightly.

If a gluten challenge becomes life threatening or really unbearable, of course a person needs to contact his/her doctor and discuss how to go further. That is just common sense. There are many diagnosed celiacs out there who did the gluten challenge like me. For me it was not a nice thing to go through, but didn't kill me either. I'm happy now I did not quit. I feel lucky I had people supporting me and helped me through it.

You said you cannot tell when you have been glutened by accident, right? (I read this on the other thread "How bad is cheating")

You read wrong.

I said my body (nor anyone else's body for that matter) can tell the difference between an accidental glutening and a glutening on purpose (as for the body it's just a glutening). Hope with the additions you are better able to understand it.

I'm sorry to hear how some of you were not able to do the gluten challenge and therefore missed to be diagnosed and to find out the benefits of being properly diagnosed.

[IrishHeart]

You read wrong.

I said my body (nor anyone else's body for that matter) can tell the difference between an accidental glutening and a glutening on purpose (as for the body it's just a glutening). Hope with the additions you are better able to understand it.

"As my body doesn't know if I'm glutened on purpose or by accident"

is what you said.

Since there was no clarification on that thread (that you mean anyone's body), to me, that meant YOU cannot tell when it happens because you have no physical signs you've been glutened , whether accidentally or intentionally. I thought that was why you were so curious about how much gluten can cause damage if someone cheats. I thought you meant you do not get sick or have symptoms.

That is why I was confused by what you said here.

No need to write "DUH!" to me, BTW (yes, I saw that you had written that at first and then removed it.)

Your sentence is open to several interpretations. But, thank you for clarifying.

[squirmingitch]

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.

Can you provide a medical study which supports your statement?

[Chad Sines]

My issues started near kidhood, flare at 31ish that was bad. They studied me for a year and then took my gallbladder which wrecked me. Full blown from jan 2010 to march 2011 in a serious, think you are doing to die way, before I figured it out. Multiple GI and all their tests could not figure it out over 20ish years because I passed one blood test. I trialed gluten-free and stopped hurling for the first time in months after only 2 days. I had no choice but to self diagnose.

Why would I care to have a doctor diagnose me with their tests. All that money just to say to go back to eating gluten-free. Seems a waste, but if you need it get it. I do not.

Plus imagine how discouraging it would be to get a negative blood test and a negative biopsy. By the logic of needing that diagnosis to adhere, this would destroy the motivation completely even though you already know.

[Ninja]

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.

Doubt that cannot be satiated by an innate sense of well-being (aka: improvement off of gluten) usually punctures through things that are "accredited" (a formal diagnosis) as well. (Lots of IMO'ing here...)

The tests are not 100% specific or sensitive *yet*. Even if they are 99.9% accurate (not saying they are!), doubt still is able to seep through the cracks – also, a diagnosis does not guarantee understanding from doctors, friends and family members.

Edited to add: I am also self-diagnosed, though I do hope to be 'officially' diagnosed because there definitely are benefits for college, etc. I was blood tested once – negative... and have been gluten free for 5 months! Not sure I want to gluten challenge...

[Lisa]

The topic is "How Many People Self-Diagnose".