What To Do When The Doctors Dont Know What They Are Doing

[Jnell12]

Let me start off by saying Im not a fan of the medical profession in anyway shape or form.

I've had so many issues for so long. My doctor finally tells me about Celiac Disease. He take blood and says he's going to test me for that and other things. Me being me, I run out and get a book, Im reading it and its me... finally, Im thinking this is it. I call my brother tell him I think he has it too. We both have a lot of the same issue, however we do not know anyone else in the family that does.

I decide on my own to go gluten free as of last Sunday. Im already starting to feel better. My doctors office calls me today and says the lab didn't test for Celiac so I now have to come back in and have more blood work done. I tell them I've been gluten free so the test will not be a true reflection of my issue. I asked them how long do I have to go back to eating gluten before having another round of blood taken.... of course they have yet to call me back.

Anyone know how long I should eat gluten and feel like crap again before getting blood work dont again?

[Jungle]

Yikes, I hate it when they don't do what they say they are going to do. I think because you've only been gluten-free for such a short time I'd eat gluten and lots of it for a week or so before testing. There is a good flow chart by the mayo clinic to diagnose celiacs on this forum. Print it and take it with you so you don't have any more problems at the Drs.

[eatmeat4good]

I'd tell them no thanks...I got my answer and I'm feeling better.

But if you want the testing...you have to continually put gluten in your body at a pretty heavy rate..like 3 to 4 slices of bread a day until the testing is over...and you still may not test positive...but if you felt better off of it...stay gluten free.

[Yup]

If you're a Canadian I would get tested because we get a tax break on gluten-free food.

[Brooksbelle]

If you're a Canadian I would get tested because we get a tax break on gluten-free food.

Exactly. And since here in the States we don't have anything like that, I decided to forgo testing because once I got off gluten, I couldn't see any reason to do testing that would require me to eat food that's basically toxic to me just to come up with a life-long prescription to do what I've already decided to do! If there were tax breaks or insurance would partially cover my food expense increases, I might consider it. But since not--not way!

Oh and if you decide to change primary care providers, you might want to consider a DO (same level of education as an MD, but with a wholistic-health approach instead of just diagnostics) or a Nurse Practitioner also trained in whole-person wellness.

Good luck figuring everything out.

[shadowicewolf]

Thats when you find a doctor that knows what he/she is doing.

[Skylark]

Four days off gluten won't change the blood tests. Go back onto your normal diet until they call you back and you can get the labs. Then do what your body tells you, even if the labs don't come back celiac.

[lovesaceliac]

I heard there were tax breaks here in the U.S. as well? My husband still doesn't want to get tested, no amount of money could persuade him to go back on gluten - I'd be wary of living with him while he did it!

[Bubba's Mom]

If you've only been off gluten a very short time, I'd say eat some and schedule the blood test. BUT keep in mind, that the blood test isn't always accurate. Mine was normal, but my scope and biopsy told a different story. It doesn't pick up gluten sensitivity either.

A genetic marker test will tell you if you have the genetic markers for Celiac, but not if you have it, and the markers for gluten sensitivity are still in question.

I know this is all confusing stuff..and most Dr.s aren't trained it. In med school Celiac disease is just a short blurb. A lot of Dr.s aren't trained in nutrition either.

Your best bet..read all you can on Celiac/gluten sensitivity and go completely gluten free for at least 2 months and see how you feel. Your body will tell you what's right.

[Bubba's Mom]

As I understand it..in the US you can claim the difference between the cost of regular food vs gluten free versions on your taxes. It would take a lot of book keeping and doesn't amount to enough of a savings to be worth it. BUT with a Dx of celiac or gluten sensitivity you can purchase gluten free foods with a Flexable Spending account. That is, money is set aside into an account without any income taxes taken out. These accounts are used for medical expenses, prescriptions, Dr. co-pays etc. You decide on the amount you want set aside and draw from it with a credit card linked to the account. Of course, you'll still want to keep receipts for proof of what you've bought/spent money on. The only caveat is..if there's any money left in the account at the end of the year, you forfeit it.

We've used a Flexable Spending account also known as FSA or Flex account for several years for co-pays etc., and only set aside what we are sure will get used. The money saved makes it well worth it!

Most employers have the option available. If you need more info you can ask the HR department or do a search online.