Are You "self Diagnosed"?

[BrittLoves2Run]

How many of you out there are

[pricklypear1971]

I'm not self dx'ed (it's complicated), but I haven't had testing.

Anyhow, the reason my ND suggested a gluten-free trial was because I have Hashimotos which is a THYROID disease.

Have any of those lovely ladies in your family had a TPO test to see of they have Hashimotos Thyroiditis?

[Celtic Queen]

I'm sort of self-diagnosed. I tested positive on the bloodwork but negative on the biopsy. But my biopsy was flawed because I hadn't been eating gluten 6 weeks prior (and because my doctor was an arrogant twit...but that's a whole other story). My GI said I wasn't a Celiac because of the biopsy & coloscopy, but I say I am because of my bloodwork and the positive reponse to the diet.

I think your idea about trying the diet sounds great. What do you have to lose? If it doesn't work, it's not like you've spent a lot of money on drugs or doctors. But you'll probably be surprised by how much better you feel without gluten. There were a ton of crazy little things wrong with me that I had no idea were related to the gluten until I started the diet.

[mushroom]

I am self-diagnosed, in fact, I am totally untested. Didn't know anything about celiac, no one suggested it (the usual IBS and fibromyalgia BS -- as well as the "it's all in your head" diagnoses). And I sure as heck wasn't going back there when the diet worked for my GI symptoms. However, I started the diet not for the GI (or IBS ) symptoms, but because I hoped it would help my rheumatoid arthritis symptoms which later became psoriatic arthritis, an autoimmune disease positively linked with celiac. I am also hypothyroid which accounts for why I was always cold.

[BrittLoves2Run]

I'm not self dx'ed (it's complicated), but I haven't had testing.

Anyhow, the reason my ND suggested a gluten-free trial was because I have Hashimotos which is a THYROID disease.

Have any of those lovely ladies in your family had a TPO test to see of they have Hashimotos Thyroiditis?

I'm not sure.. is there a separate test you have to do to see if it's Hashimoto's? I could ask her.

I'm sort of self-diagnosed. I tested positive on the bloodwork but negative on the biopsy. But my biopsy was flawed because I hadn't been eating gluten 6 weeks prior (and because my doctor was an arrogant twit...but that's a whole other story). My GI said I wasn't a Celiac because of the biopsy & coloscopy, but I say I am because of my bloodwork and the positive reponse to the diet.

I think your idea about trying the diet sounds great. What do you have to lose? If it doesn't work, it's not like you've spent a lot of money on drugs or doctors. But you'll probably be surprised by how much better you feel without gluten. There were a ton of crazy little things wrong with me that I had no idea were related to the gluten until I started the diet.

yeah.. I don't see how I could do any harm in trying (after I know all testing is done) I have so many issues. I really hope this could be what makes them go away.

I am self-diagnosed, in fact, I am totally untested. Didn't know anything about celiac, no one suggested it (the usual IBS and fibromyalgia BS -- as well as the "it's all in your head" diagnoses). And I sure as heck wasn't going back there when the diet worked for my GI symptoms. However, I started the diet not for the GI (or IBS ) symptoms, but because I hoped it would help my rheumatoid arthritis symptoms which later became psoriatic arthritis, an autoimmune disease positively linked with celiac. I am also hypothyroid which accounts for why I was always cold.

Did the diet help? I have SO many problems with my joints aching. I've been tested for RA, Lupus and Lyme's and they came back fine. I do have a Rheumy appointment at the end of the month.. i've also had an appointment with a Neurologist who wants to do a nerve study and an MRI. My doctor doesn't think Celiac "even possible" but I was diagnosed with IBS in 2010. Arg. Just so frustrating.

[pricklypear1971]

Yes, it's called a TPO antibody test for Hashimotos.

If its +, its a strong link to Celiac.

[mushroom]

Did the diet help? I have SO many problems with my joints aching. I've been tested for RA, Lupus and Lyme's and they came back fine. I do have a Rheumy appointment at the end of the month.. i've also had an appointment with a Neurologist who wants to do a nerve study and an MRI. My doctor doesn't think Celiac "even possible" but I was diagnosed with IBS in 2010. Arg. Just so frustrating.

Unfortunately, the diet has not relieved my psoriatic arthritis, for which I now take Humira injections. However, I have been able to avert any joint injuries and I think getting rid of the gluten has helped that. Incidentally, I tested negative for rheumatoid factor. After going gluten free I discovered all lthe other foods I did not tolerate in addition to gluten (although I already knew about the lactose and the corn), especially soy. I dropped nightshades to a low level because of the arthritis (they are pro-inflammmatory) and then discovered that I was intolerant of them too - gave me hives.

[Skylark]

Untested here. I found out I couldn't eat wheat or rye on an elimination diet and figured out the problem was gluten. It was well before the research showing celiac is common in the US and I didn't know a thing about the testing. I didn't happen to say anything to my Dr. until four months after I'd stopped eating gluten. My Dr. said I was likely celiac because of all the stuff that resolved gluten-free. He gave me the option to challenge and get an anti-EMA test but I only made it through one sandwich.

I have Hashimoto's. One kind of autoimmunity makes it more likely I have celiac because of how autoimmune diseases cluster.

[Kansas]

I am untested as well. Numerous doctors and specialists tested me for so many things, started losing over a pound a day, neighbor kept telling me to try the diet because her husband is gluten intolerant, I didn't have any of his symptoms. Surgery doc (that was going to perform endoscope) told me to drink Ensure, of course she didn't do any testing for gluten intolerance while she was there(???), but that was the beginnning to my recovery. If you do the diet, you might also want to stop dairy and soy as well, it took me a long time to figure out that dairy was just about as bad as gluten.

[jmrogers31]

I don't consider myself a Celiac but gluten intolerant for this reason. I was having so many issues with headaches, anemia, stomach aches, gas, bloating, constipation, asthma, environmental allergies, sinus issues including surgeries for pollups, and anxiety. My doctor tried antibiotics, iron supplements, multivitamins, decongestants, etc with no improvements and one day she said to try a gluten free diet for a month. Within 2 weeks I knew this was the cause as my anxiety disappeared as well as all my digestive issues and headaches. Still healing and am hoping the anemia, allergies, and asthma resolves. I asked her a month later if I should be tested and she said why bother if you feel better? I thought about it and agreed.

[newlifeforme]

Self diagnosed. And very proud of it!

[beebs]

I suppose I am self diagnosed- in that I don't have a formal diagnosis -(I haven't had an endo) having said that all my drs and specialists agree that I am coelaic - there is just no way I'm not. Because I haven't had a biopsy - I always have this about 10% doubt, I'm 90% sure I'm coeliac - but what if I'm not? What if its something else and I'm gluten free for no reason - blah blah blah!

[beebs]

My joint issues (which are deffo autoimmune) have so far not resolved on a gluten-free diet - its been a year and they just get worse and worse So bad, cause I sort of assumed they would after reading so many success stories here! Doh!

[mushroom]

My joint issues (which are deffo autoimmune) have so far not resolved on a gluten-free diet - its been a year and they just get worse and worse So bad, cause I sort of assumed they would after reading so many success stories here! Doh!

Try not to feel too bad. It doesn't always work for all of us all the way Just be thankful for what it has done for you. Sometimes we do have to have treatment for the secondary autoimmune diseases that have hitched a ride on the gluten boat.

[researchmomma]

How many of you out there are “self diagnosed” Celiac’s or going gluten-free because you couldn’t get a positive results? I’m just curious as I’m waiting for the results of my blood work that was done this morning (and so far nothing has ever come back in MY favor). I’ve decided that even if the blood work comes back fine I will probably do a 3 month gluten-free test. This is the first thing in the years of sickness that actually makes sense.

Also, everyone woman on my mom’s side of the family has underactive thyroid, which I was also tested for today. I’ve been reading that sometimes there are correlations between thyroid problems, and Celiac. My mom has been on synthroid for years in the past few weeks of researching Celiac, I think she could have it too.

My daughter has a long list of symptoms including occipital seizures. She tested negative. However, I was encouraged by what I read about gluten symptoms and a few forum members here suggested that we try the gluten free diet. We have seen amazing changes. We are still in the early stages of eating gluten free but even my skeptic husband is in shock over the positive changes in my daughter. Her anxiety seems lessened as does her cranky attitude. In addition, she is eating again. Before she went gluten-free, she would eat two bites and say her stomach hurt. She is short in stature. We are hoping for some growth in the next few months.

My family also has some pretty amazing history like pernicious anemia, duodenal cancer, Grave's disease (thyroid disorder), osteoporosis and parathyroid tumors. Doctors and tests can be wrong. Or they can be right.... perhaps my daughter doesn't have Celiac but maybe gluten intolerance. We know it is real while they still debate its existence. When will they get it?

So, if your tests are negative, give gluten the boot for 3 months and try it out. It has been a pretty amazing road for us so far!

[UKGail]

Our family is riddled with biopsy confirmed celiacs, but I am negative to the blood tests. My doc was more concerned about ruling out lupus or similar conditions than pursuing a biopsy, so I am already happily gluten free without biopsy confirmation, but I wouldn't neccessarily recommend this route.

A leading coeliac specialist in the UK thinks that maybe about 10% of celiacs test negative to the blood tests. If your blood tests are negative, and you are still sure your symptoms fit, then I would insist on a biopsy, possibly preceded by genetic testing if that makes your doctor happier. In the UK, the official protocol is to biopsy even where the blood tests are negative, provided there are sufficient clinical reasons.

[navigator]

I'm diagnosed by blood, endescopy and biopsy. However, if you respond positively to going gluten free I would say that your body has done your diagnosis for you! I think that regardless if the diagnosis is 'official' or self-diagnosed it makes sense to adopt a strictly gluten-free lifestyle. Our bodies so often know better than the doctors!! I've noticed recently a tiny bit of division appearing in some posts regarding official and self diagnosis. This isn't helpful. Personally, although I was originally resistant to endescopy as it meant going back on gluten for 6 weeks, I'm now glad that I went down that route but this is a very personal decision. I've gleaned a great deal of knowledge from self-diagnosed members of this community - and we should remember that we are a community!

[Metoo]

I'm self diagnosed.

I had negative blood work, and I was so tired of the stomach pain and ezcema that instead of working with my allergist, I went gluten free. He agreed after 3 months of a food journal that he would refer me to a GI, for a scope if I could prove if through a food journal. Seemed like way too much work, and more time I would have to deal with the random stomach pain.

I am over 2 months gluten free, within 3 weeks I felt like a new person! I have not had any stomach pain, my ezcema cleared....however now if I do accidently eat gluten I break out in a horrible painful, blistering, peeling down to raw skin rash. Each time I have been glutened it gets worse too. I seem to be much more sensative...that in itself is enough of a diagnosis for me!

I have considered getting my skin biopsied for celiac when I have the rash. I just don't really want to eat gluten to even do that. There is no way I could do the scope.

[BrittLoves2Run]

Thanks for all the answers! I just have this awful feeling the blood work will come back okay. But like I

[UKGail]

I have stood exactly in your shoes.

I had known for about 10 years there was a risk of Celiac because of a family history of it, but had always tested negative, so I kept eating gluten.

My health continued to go downhill pretty rapidly and my doc scared me by by saying he thought I might have a connective tissue disease and sent me to a lupus specialist.

The specialist thought it might perhaps be lupus, but wasn't sure, so asked me to go on a strict gluten free diet to see if that helped, given my family history.

The diet quickly got rid of so many symptoms that the answer was blindingly obvious. However this doesn't seem to happen to everyone who has other related autoimmune problems. I suspect I was lucky in nipping the progression in the bud, before it became entrenched.

I would definitely trial a gluten free diet if your doctor refuses to comply with good medical practice, but I would try to stand my ground with him/her first.

[BrittLoves2Run]

I have stood exactly in your shoes.

I had known for about 10 years there was a risk of Celiac because of a family history of it, but had always tested negative, so I kept eating gluten.

My health continued to go downhill pretty rapidly and my doc scared me by by saying he thought I might have a connective tissue disease and sent me to a lupus specialist.

The specialist thought it might perhaps be lupus, but wasn't sure, so asked me to go on a strict gluten free diet to see if that helped, given my family history.

The diet quickly got rid of so many symptoms that the answer was blindingly obvious. However this doesn't seem to happen to everyone who has other related autoimmune problems. I suspect I was lucky in nipping the progression in the bud, before it became entrenched.

I would definitely trial a gluten free diet if your doctor refuses to comply with good medical practice, but I would try to stand my ground with him/her first.

When should I start the gluten-free? I've already had the blood work. Do you still have to be eating gluten IF they do suggest a scope? I'd really like to start ASAP as i'm feeling terrible, but I don't want to do anything to mess the tests up. Is it possible they may do more blood work if it DOES come back positive for something?

[navigator]

Standard medical advice is that you should stay on gluten until you have scope to prevent false negatives. Do you know how long the waiting list is where you live? I originally went off gluten when I got positive blood test as I decided not to have scope. However due to employment difficulties and to rule out other issues, I changed my mind. I'd been strictly gluten free for 4 months and went back on gluten for 7 weeks before scope.

[UKGail]

Unfortunately you need to be eating plenty of gluten for the biopsy. I had a biopsy 2 years ago, and was gluten-lite at the time because I instinctively felt better that way, after having been in hospital with nil by mouth for a while. The biopsy was negative and I'll never know if it was due to my gluten-lite diet or if my villi were resolutely intact despite my gluten-responsive symptoms.

They won't do any more blood tests for celiac, but I am not sure that they wouldn't do more tests for other things if your tests picked up another abnormality eg thyroid problems. It depends what tests your doctor ordered. I had some secondary blood abnormalities which all went away within 2 months of being gluten free. But that is not everyone's experience.

As you are so close, I would stick it out if you can bear it. Once you are gluten free, if it helps, you won't ever want to go back, so a formal diagnosis becomes very difficult at that point.

If it all comes back negative, or you decide you don't wish to worry about a formal diagnosis, try the diet anyway.

[UKGail]

Navigator has a good point about the scope being useful to rule out other things.

I too have other symptoms which are still bothering me (which weren't a problem when I had my first scope 2 years ago), so I am now considering asking to see a gastro-enterologist again to have them checked out. This will inevitably mean a decision on whether to eat gluten again for a while, which I hate the thought of.

[deltron80]

Do I count as self-diagnosed if I figured out that I have Celiac before my doctor and I had to request the blood test?