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David

Possible Or Practical To Get Doctor

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I don't think you are hearing us David. Any lab tests now would probably be negative--blood for antibodies or endoscopy for intestinal damage. You have been off gluten too long. What do you want this doctor to do for you?? Cost you a lot of money to tell you you are not a celiac?? I am very confused here as to what you hope to achieve.

Yes, it is frustrating to have to pick your way through the minefield of food intolerances; and more can pop up along the way, especially while you are still healing, but we really have to do it ourselves. As I said, there is no magic pill to get you through this, and at this point your only possible choice of testing, IMHO, is through Enterolab.

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I don't think you are hearing us David. Any lab tests now would probably be negative--blood for antibodies or endoscopy for intestinal damage. You have been off gluten too long. What do you want this doctor to do for you?? Cost you a lot of money to tell you you are not a celiac?? I am very confused here as to what you hope to achieve.

Yes, it is frustrating to have to pick your way through the minefield of food intolerances; and more can pop up along the way, especially while you are still healing, but we really have to do it ourselves. As I said, there is no magic pill to get you through this, and at this point your only possible choice of testing, IMHO, is through Enterolab.

Hi:

Yes, I understand that it is too late for a celiac disease diagnosis, but can

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Hi:

Yes, I understand that it is too late for a celiac disease diagnosis, but can’t a doctor help out on determining other food allergies or intolerances?

And let me pose this question. Can you, or anyone else on this board tell me this isn’t a sign of something more serious? Could it be cancer, liver issues or I don’t know what else?

I mean I’m “pretty sure” I have celiac and part of that “pretty sure” is based on my sister’s experiences, but she doesn’t have an official diagnosis either.

When I go to the doctor, I’m going to say what I think it might be, but I’m also going to ask if it could be something else.

And as far as Entrolab goes, I part of me really wants to do it, but frankly I spent an hour researching them tonight, and I can’t find a single bit of independent back-up that it is legit…. Most of the positive information I saw was clearly written by the company. I did see some positive user-submitted comments, but for all I know, people who work for Entrolab could have written some of those. (I worked in the internet marketing industry briefly, and I know that’s a common practice…)

Just from an cost point of view, Entrolab is $250 for a celiac test, minimum out of my pocket (And I’d want to be tested for soy and casein and that’s another $100 for each test)… Compare that to going to this doctor, $40 for the visit… From I can get a list of the tests a doctor recommends… Not sure how much those tests will be, but will be discounted… At the very least, I can get a list of the suggested tests, see how much they cost, and decide what to do from there…

I just think I need options…. I know if I had insurance, the first thing I would have done when I thought I had celiac disease (and later with these allergies) would have been to call a doctor. I am just looking for an affordable way to do that now.

Rather than going for testing at this point, I would continue to work with dietary changes to improve your health. An elimination diet, though difficult and time consuming, would really be a good way to go...and would probably give you some clearer answers. You mentioned the possibility of lactose intolerance. Try eliminating dairy for a minimum of 10 days (I think a few weeks is better though), and then reintroducing. We did this with my entire family and came away with the clear answer that there is no dairy allergy, but my son does have lactose intolerance. Now we "treat" it with avoidance and lactaid, and his daily tummy aches have disappeared. :) This webpage is a good resource for going Dairy Free: http://www.godairyfree.org/

When it comes to allergy and intolerance testing, it's really hit and miss. The tests just aren't that accurate (for example, my daughter's pecan test came back negative, but it is the nut she most strongly reacts to!), and, quite frankly, the medical community still doesn't know that much about how allergies work anyhow. I don't think that allergy testing would be worth the cost without insurance. An elimination diet would be more effective.

Aside from the allergies I've known about and dealt with all my life, I've been through the whole testing gamut, and my tests still say everything is "normal." I've simply come away with diagnoses of IBS, CFS and EDS. And the EDS diagnosis may just haunt me down the road if Canadian healthcare becomes privatized, as it could be considered a preexisting condition, limiting the kind of coverage I get, and raising the premiums. That said, there is still something really amiss with my health and I continue to do testing to find out why I am experiencing the symptoms I have.

Do consider that getting any kind of diagnosis may make getting your own insurance difficult down the road. If elimination diet doesn't help, then maybe consider further investigation with a doctor's help. Or reconsider Enterolab, as it may just give you a better picture of what's going on than what the standard lab test will.

Michelle

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I just concur with all the others David. You will not get a proper diagnosis at this point and even if you did where would it get you? You would have to ensure that you ate a gluten-free diet for life.

As you already know that gluten affects you, then the situation is no different.

I think many of us worry about things like Cancer, and of course, there is always that risk, and by all means get yourself checked out for that if for no other reason, but by far the majority are just suffering because of the damage that has been inflicted by the gluten.

The damage prevents the gut from being able to digest properly and sometimes that also means that some innocuous foods get dragged into the intolerances. Other things like soya and corn can also be damage-trigger foods, especially in their processed forms, so if you are in any doubt as to your tolerance of them, then it would be best to avoid them too.

The important thing is to give your body the tools to heal. Gluten and the huge amount of processed food and carbs and high sugars are damaging everyone to a greater or lesser degree. Every day, every hour, even every second, more and more people are joining the band of those who are finally realising that it is the food they are consuming that is making them sick.

What Man has done to it all is turn it into food that well, looks like food, and tastes like food - but is not of any real benefit to the body at all.

You need to empower your body with good, healthy, live foods rather than 'dead' ones. I am sure I may be slapped for saying it but to be quite honest (and in my experience) some of the gluten-free stuff is rubbish too - often very high in sugars and/or salt to make it more appealing, and palatable! They not only have to make it relatively edible, but give it as long a shelf-life as possible and that impacts on the quality - you can't beat home-made.

You will only get good nutrition from good food. Whilst the Medical Profession may have some knowledge of some things, they have little or no knowledge of how food affects our bodies. They are not interested in knowing how food affects our bodies and unless you are extremely fortunate to find a very good and very knowledgeable alternative health professional then as so many of us have discovered, unfortunately you are very much on your own.

That is why it is so important to get to know and understand your body. Listen to the signs it is giving you, and give it what it needs.

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David

You have more faith in doctors than I do. No doctor ever suggested to me I might have celiac disease despite numerous tip-offs over a period of five decades. I figured it out for myself after reading a newspaper article and eliminating wheat from my diet. I knew within 48 hours.

I have since seen a so-called self described "celiac expert" GI doc who was totally useless. All he wanted to do was a colonoscopy, funny, how expensive those are. He had absolutely no interest in helping me with celiac related health issues and made several inaccurate statements about celiac.

I understand that you are concerned about the possiblity of cancer or some other issue and it's a good idea to get checked out for your own peace of mind.

You might want to search the site for "insurance" and read about other members experiences. Having celiac on your medical chart may cause you problems in the future buying life or health insurance.

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Oh Pells, I agree. What Doctors have done for me and mine over the years I could write on a postage stamp - in fact they have done far more damage than good.

Not to say there aren't some good ones out there, but it's like trying to find a needle in a haystack and unlike over there in the States where you have some kind of say in who you see, we don't have that. You are booked in to a Surgery/clinic and that is that.

You have to wait to be referred to any Specialist and then it will only be the one who you are assigned to. When I was bad 6 weeks ago my Doctor sent a letter for an appointment for an Ultrasound. I'm still waiting.

By the way, I'm better now and don't need it any more..............

That's the problem over here. By the time anything gets done, you're either better - or dead.

The only way I got any help when I was really bad was to just turn up at the Hospital. They then did perfunctory tests, found nothing wrong, virtually accused me of wasting their time and sent me on my way.

It was only through my own efforts, research and investigation, that I came across the floating stools/raging diarrhea link to Celiac, dropped gluten, and the rest is history.

Doctors can't pick up anything in its early stages - you have to have a full-blown disease before they will find anything. So Adrenal exhaustion is pretty much ignored until it is so bad you find that you have Addison's Disease! Liver disease is dismissed until you have turned yellow. They don't understand the concept of 'catch it in its early stages'!

Sorry to vent on this David, but you have to understand the frustration of many of us who have given up on ever getting any help or support from the Medical Profession!

As the only two options they have to give is surgery or drugs, to be quite honest I don't believe for one second that I am actually missing anything.......

I have learned to become an 'expert' on my own body. At the end of the day they are only 'expert' in their own eyes. Everything is based upon opinion. Who is to say that theirs is any better than mine?

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Hello Everyone:

Just wanted to give a quick update.

I had my doctor's appointment on Monday, and was very pleased with the service and level of care.

Basically, I met with a doctor, he listened to my concerns, then had a consult with another doctor. She too was very nice, and was actually very familiar with celiac disease, food allergies and the elimination diet. (I was really impressed with that, when I had insurance several years ago, my doctor had never even heard of celiac disease.)

At any rate, they scheduled about six different tests, and I will go back for them in about two weeks. The fees were very reasonable, all of the tests amounted to little more than, $200 total. They said if they decided I need more complex or involved testing later, that could get pricey very quickly, and suggested go through the county's "Ability to pay" program for those tests. But I truly don't think it will come to that.

I am going to opt out of one test. They suggested I eat gluten for three weeks and get tested for it then. The doctor who seemed to know a lot about Celiac Disease said three weeks would be enough time to show up on the blood test, though I've heard here it could take a lot longer...

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Hi David,

Glad you feel you're on the right track. Just wanted to let you know that I've basically followed the same two-pronged path. When I first fell ill six years ago, I went through a lot of testing that brought me nowhere. Finally after three years, I figured out that food triggered my condition, and I found an immunologist who dx me with candida & leaky gut and identified several intolerances, incl. wheat. The diet and herb regimen he put me on helped a lot, but never cured me. And since then I've been struggling, from time to time going back to the doctors for more tests, but not really getting anything useful. Only as you say, it does confirm that I don't have any other major illnesses. In November last year, a Health Practitioner dx me with celiac, and as the gluten free diet didn't help me sufficiently in February I put myself on the SCD. Now five months into the SCD I'm a lot better, but I still get setbacks all too often. Don't know if it's something else being wrong or just the time it takes to heal. But I did go to the hospital for further tests recently, still waiting for the results. I don't have much hope they'll find anything, but at least it makes me feel I did something .... and for the rest I'll just carry on with the diet - getting much support and knowledge from people in this forum :)

Good luck with the elimination diet !

Jan

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