Could Diagnosis Be Wrong?

[ana]

I had a positive blood test and a slight flattening of my villi in the biopsy results. My Dr. felt it was definitive Celiac. I often wonder if he wuold have felt like that had i not told him my family history, my mom and nephew with it. I really don't want to have this diagnosis. I find it hard to adhere to the diet. I told my dad, maybe the dr. was wrong, i don't have a huge anti-body count or my villi wasn't totally damaged. my dad agreed, but he doesn't want to think i have it either.

but the Dr. felt i was healing because i'd been on Gluten free for 3 weeks before the biopsy, endoscopy. i have had something gluten, tortillas, and get the big D, but then i have tried it again and it was just an upset tummy, bloating and gas for a couple days. i didn't get violently ill like some people here say they do when they get glutened. I've been diagnosed since October and have been trying to be gluten-free since then.

So is it possible to have a false positive diagnosis?

[happygirl]

Ana,

You have classic, textbook-case Celiac Disease. Your doctor is correct. Any flattening of the villi is indicative of Celiac (that is what Celiac is). You have positive bloodwork and a positive biopsy...your doctor is right when he said that this is definitively Celiac. You have what Celiac experts call a 'gold standard' diagnosis.

It doesn't matter the level of your antibodies, or the level of damage. Its kind of like being pregnant. You either are or you aren't----you can't be a little bit pregnant. You had the two positive tests: you are just as much of a Celiac as someone who technically had "higher" counts or "worse" villi damage. Plus, if you had biopsies taken in another area, it could have shown even worse damage (the disease is not uniform...parts might be fine, parts may be damaged).

Symptoms vary: from person to person, and even within the same person. You might have one symptom one time, and another symptom another time. There are even (medically documented) Celiacs with absolutely no symptoms, but villi damage. So difference in symptoms, or comparing your symptoms to someone else does not diagnose/undiagnose you Sorry!

Let us know what we can do to help make the diet easier. It is a hard thing to get used to, but I am confident that you can do it.

Laura

[Lisa]

Ana:

Celiac is celiac. With a positive blood test and positive endoscopy that's a pretty clear definition.

I, myself, when feeling my lowest, thought that I had intestinal cancer. And to be finally diagnosed with Celiac was something to celebrate. I did not have cancer or other ailments that needed drugs to cure, or just maintain.

I can control this disease. I don't have to take drugs and if I control my diet, I can live a healthy life style.

Every gluten that you consume will continue to destroy your intestines. You need to know that gluten is considered "rat poison".

I want to welcome you to this board and would suggest that you read, read and read somemore. It is the best source of information that you can get.

I am sure that others will post and welcome you as well. Your health is in information. You are in good company here.

[Fiddle-Faddle]

Welcome, Ana!

If it makes you feel any better, some of us here have only mild bloating, mild constipation/looses stools when we have a whole spaghetti dinner! (That would describe me--I have NEVER gotten violently ill from gluten.)

What keeps me adhering to the gluten-free diet (besides for actually seeing my waist again after the bloating went away!) is the knowledge that I will develop other autoimmune disorders if I go back to gluten. I already have autoimmune thyroid disease, and that's more than enough for me. There are so many long-timers here who have or had fibromyalgia, lupus, rheumatoid arthritis, MS symptoms, etc. I don't want to go down that path, and there is only one way to avoid it.

The good news is that there are geniuses out there who have figured out how to make EVERYTHING we like gluten-free (and good-tasting!), from pizza crust to bread to cakes to cookies to pie crusts to biscuits to pancakes to pasta to.....

Whatever you might be craving, put up a post about it, and 10 people will respond with recipes or websites to order it!

The only difficulty is eating out--but many of us have found that we are getting far fewer viruses now that we eat out so much less! And many restaurants are starting to have gluten-free menus, and you nkow the # will only go up! And a nice side benefit is that most of us find that we are making much more healthy food choices now.

A little denial is probably a normal reaction--but you can only stick your head in the sand for so long. At least you found your way here--whatever you need--support, shoulders to cry on, a safe place to vent, recipes, ideas, where to buy things, etc--this is the best place to be!

Now--what part of this diet is the hardest for you? Maybe we can help you find ways around the difficulties.

[Aerin328]

It's really hard to face, and difficult to do. But as the previous poster commented, you don't want to wait until it is too late. I was healthy for years, and then *bam*- I was bed-ridden for months. Auto-immune illness is terrible to escape from once you're in its cycle, so try to avoid getting sucked into the cycle! Go gluten-free! All here will be available to support you. Good luck!

Christian

[Jestgar]

Hi Ana,

I know the diet is hard to adjust to when you're first getting started, but like anything, it gets easier with practice. Stick with it, and stick with the board, we'll get you through it!

[chrissy]

i know about those thought of denial----i had them when my 3 girls were diagnosed------and we only had one "iffy" biopsy between the 3 of them. they were diagnosed with positive bloodwork. since being gluten free, one daughter's nausea went away, one daughter's rashes cleared up and the other one did not have obvious symptoms, although since being gluten free we have seen some of her old problems reoccure when she gets gluten. all three of my girls have had their antibody levels drop since going gluten free, so there is no doubt that they havae celiac.

non-celiacs seem to think the diet is much harder than celiacs do. after i had several meltdowns before one of my girls made some good tasting bread-----then i quit crying. my twins have become quite good cooks since going gluten free, and my 11 yr old makes a fantastic caramel corn (gluten-free, of course).

it will eventually get easier, i promise.

[tarnalberry]

You have positive blood tests (even after being gluten free).

You have a positive biopsy (even after being gluten free).

You have symptoms after eating gluten.

You have celiac. There is *no* question about it, and thank goodness it's such a clear cut case!

You need to be gluten-free. For life.

I know it's hard now, but it will get easier with time if you make the effort to adapt to the change. Many of us find it only just a small inconvenience in our lives, even if we're dealing with other food intolerances as well, after a while. Keep reading and keep researching for lots of ways to make the transition easier - it's not easy; it's a tough psychological change, but you can do it!

[lovegrov]

I'd agree there's no question you have celiac.

richard