Misdiagnosis...

[Christal]

8 years ago and very sick I was told I was lactose intolerant and that I had IBS after years of consultations with doctors. Finally I went on an elimination diet and found that I felt so much better when I cut out wheat. I went to a Dietician and she told me that I had Celiac Disease. She said that because I had stopped eating gluten for so long ( six months ) that a blood test would not give accurate results.I decided not to go ahead with an endoscopy as I had spent so many years sick and having to get so many different tests done with very little results. Just to feel well again was good enough for me.

I have been gluten free for 8 years now and the doctor I am seeing now convinced me to have a blood test to check for Celiac Disease... It came back negative (Which I thought it would since I haven't eaten gluten for so long) and my doctor really wants me to go to get an Endoscopy to get more detailed results. She says that I have IBS and probably a wheat allergy but really doesn't think that I have Celiac Disease at all.

Has anyone else had difficulty like this? I'm just so confused now and really wish that I had of had all the tests done earlier. Either way going Gluten Free for 8 years has been so much better for my health. Is there a big difference between Celiac Disease and Wheat Allergies?

[Lisa]

I can understand. Every doctor that I have been, wants to run his/her own tests. I don't know if the reason is to make money or just doubting others results.

Obviously, your blood work would be negative for Celiac and I expect so would the endoscopy.

But you seem to have some ongoing issues and maybe it's not a bad idea for have a endoscopy exam as well as a colonoscopy if you have not already done so. I always think it's a good idea for most of us who have had digestive issues for many, many years to have some base line tests, just to make sure that there is nothing more serious going on.

Many people here have been tested through Enterolabs, who can test for food sensitivities. They cannot diagnose, but they might be able to direct you to some other food issues you might be having.

Dietary response, in conjunction to other test can be a diagnoses for Celiac Disease. You may have a gluten intolerance or a gluten allergy.

[lizard00]

HI, and welcome to the forum

As you said, your results had no chance in being positive having been on the diet for 8 years. Doctors use blood tests as a way to monitor patients progress and to make sure they are sticking to the diet, so why they thought it would indicate whether you had celiac or not is beyond me.

There is a difference in celiac and wheat/gluten allergy. Celiac is an autoimmune response, which damages the villi of your small intestine. An allergy is an immune response, and can cause any number of symptoms, but doesn't involve the autoimmune reaction.

You can be tested for an allergy at any point, so if you want to rule that in/out, check into an allergist. But to be tested for celiac at this point, you'd have to go back on gluten for somewhere around 1-3 months and eat the equivalent of 2-4 slice of bread a day to even hope for an accurate result.

I went gluten-free before being tested, had negative results, and by the time I went to a doctor who was actually on board, 6 months had passed and I felt so much better I wasn't going back to gluten. So, he ordered the genetic testing to determine my risk factor in even developing celiac. Between the risk factor and my dietary response, he believes I have celiac. That's my experience, hope it helps. You are definitely not alone here, though. There are many of us who figured it out ourselves.

Edit: To echo Momma Goose, if you are having ongoing issues, then it is definitely a good idea to pursue further testing.

[Crystalkd]

I took all the tests and they came back inconclusive. None of the tests will show anything since you've been gluten-free for so long. I don't see the point in doing an endoscpy unless your having GI symptoms. I just had another one done because of issues. They found a few things tha they're now looking into. The GI is also looking at my villi agian since he was in there in case I'm getting glutened and it's affecting me. I've also been told I have IBS but I'm not sure I buy it.

[sneezydiva]

I actually have a confirmed wheat allergy found by a skin test. Though in my gut (no pun intended) I think it was more than that. Two of my celiac blood values were at the highest value to be considered normal, and I can not tolerate any gluten. Though there is a difference between allergy and celiac, functionally, the solution is the same--gluten free diet. Yes, techically you can have barley and rye if you only have a wheat allergy, but wheat is the most ubiquitous anyway.

I can tell you it IS nice to have some type of diagnosis. If the nutritionist's diagnosis is a part of your record, and you're not having any symptoms, I wouldn't worry about the endoscopy. If you are having symptoms, you may want the endoscopy to make sure nothing else is wrong. If you don't have any formal diagnosis, even an allergy diagnosis makes life a bit easier as far as dealing with other people, including doctors. I was at the point where I knew I was going to eat gluten-free regardless of the allergy and celiac tests. But my own mother takes things much more seriously now that I have the allergy diagnosis. And btw, the allergist told me point blank, "It would be wise for you to avoid ALL gluten, not jsut wheat."

[beanpot]

It seems that doctor doesn't really understand celiac disease if they think that negative test when you weren't eating gluten means you don't have it. I would think about getting a different doctor.

I'm not one to talk about diagnosis, because I've diagnosed myself with gluten intolerance or celiac based on the positive dietary response along with my family history and ethnicity.

However, many years ago I did test positive on a skin test to wheat. I didn't avoid wheat because of it though, until I learned about the concept of allergic load, and then I decided to go wheat free during hay fever season and it helped. This year, since I have had GI symptoms for 3 years, I decided to go all the way to gluten free, and it has helped more that my pollen allergies.

Anyway I think a big factor is how you feel on the gluten-free diet and off of it. Its almost easier to be gluten-free than just wheat free. There are so many gluten-free products available for baking, whereas when I was wheat free I had to seek out barley flour and mix it with oat flour. There was very little info then on how to manage just wheat free.