Is Celiac Ever Misdiagnosed?

[Lsquared]

Hello there,

This is my first posting. I am wondering how often is Celiac Disease misdiagnosed. I am overall confident that the diagnosis is correct - when I was diagnosed a year ago the three antibody indicators were very high, and later my GI doc checked out my small intestine and saw the corresponding damage. Also, those three indicators are now low.

But, my health has not improved much in the past year. In fact, now I have irritable bowel syndrome. My GI doc said I seem to have it independent of the Celiac Disease.

I just want to make sure my diagnosis is correct. I suppose I could try eating some wheat and see if I instantly get sick, but I'd rather not flirt with illness as my health is rocky anyway.

Any thoughts, or referrals to a celiac doctor I could consult on the internet?

Thanks,

Laura

[jerseyangel]

Hi Laura--welcome! My first thought when I read your post is that from the looks of your tests, you have it. Celiac is often misdiagnosed, but that's because it is usually mistaken for something else, like IBS. One possibility as to why you still don't feel well is that you may have other food intolerances. Many times, when gluten is removed from the diet, other things like soy, corn, dairy, to name the more common ones, become a problem. Also, all of your personal care products need to be gluten-free, also. Double check for possible CC risk in the kitchen, too. Any wooden utensils, boards, toaster, collander, scratched non stick pan that was used for gluten should be replaced. Please don't test your self by eating wheat! Explore the other possibilities, and feel free to ask any questions you may have regarding safe products, CC, etc.

[Rusla]

Hi Laura,

Welcome to the board and the best place for support. Celiac Disease is always misdiagnosed but against, not for Celiac. Meaning most don't have a clue about it and tell you that you DON'T have it or it is menopause, flu, IBS, Colitis, all in your head, you are and idiot, Crohns, etc., etc.

You have damage that they saw, so you would have it for sure. The gluten-free diet is not the worst thing I have had to deal with in my life. It is not that bad.How long have you been gluten free? Did you get sick before when you ate gluten? Not always do Celiacs show symptoms. However, you will do yourself more damage if you eat gluten.

I don't like being sick, I don't want stomach or colon cancer so, I make a concious effort to keep away from the stuff, even though sometimes I get a craving.

[plantime]

You have been, without shadow of a doubt, positively diagnosed. To eat wheat now, for any reason, would be insanity. Your IBS could very well be that you are still healing. I was on a gluten-free diet for 6 months before a positive biopsy, it sometimes just takes a long time to heal.

[mart]

Hi Laura. Just wanted to welcome you. All of the above advice is excellent, and I agree that for a lot of people it just takes a lot of time to heal. So hang in there and visit this board often. You'd be surprised at some of the places gluten may be hiding and contaminating you, like shampoo, make up, etc. If anything, you'll come out an expert from reading the posts of the many knowledgable people on this board.

[Rikki Tikki]

Hi Laura:

Let me say that I have been where you are. It took me about 3 years to heal. Gluten is in so many things, make-up, medications, lotions etc. Be really careful with what is going in and on your body. Just hang in there and we are here for you..

[Canadian Karen]

Yep, that's for sure........ lipstick, lip moisturizer, glue on envelopes, stamps.... the list goes on and on....

I swore up and down I was 100% gluten free without a doubt, and the whole time I was taking Gax-X Chewable Tablets for my severe gas. Well, guess what, the chewables contain gluten! I was poisoning myself the whole time! BTW, the softgels are okay for us......

There are so many ways it could still be getting into you and that is stopping you from healing.....

Oh, and BTW, Welcome to the Board!

Karen

[Lsquared]

Hi there,

Thanks for everyone's thoughtful posts. I am not tempted to eat gluten - as soon as I was told that I likely had this disease 14 months ago I went gluten free and never went back. The diet is a small task compared to all of the ill health I have suffered. It's really not that hard to do, as many of you know, overall. But now, perhaps, I really need to be even more vigilant about my cosmetics, hair products, and medicines. Actually, I'll get back to that in a minute.

First: I just got my medical records and I reviewed the results of the endoscopy from last year - the damage wasn't severe, there was some atrophy or something, but I guess that combined with the skyhigh antibody readings convinced the GI doc that I have it - he has a lot of experience with the disease, so I trust him. I just got a colonoscopy and during the procedure my doc was able to travel a bit into the bottom of the small intestine - he took a biopsy there and in the colon - and I just found out that both areas tested normal. At first he thought he saw atrophy in the small intestine but the biopsy of that area was fine.

So, given that my intestinal tests look good, I'm pretty sure my doctor would tell me that I don't have to toss shampoo if it has a little wheat in it. But it sounds like you all think I should. For example: I have been using Aveda hair and some makeup products (but not lipstick) - most of them contain wheat. I am overall very good about checking my prescribed and over the counter medications, but I guess I need to be even more vigilant. Is there an up-to-date, reliable list of gluten-free drugs available? I seem to remember hearing about this at some point? It would also be great to get a comprehensive list of gluten-free beauty products.

And I suppose that I might be exposing myself to gluten eating out, even though I always ask questions. Maybe I should just eat in for a year - I'm in grad school and am not a big cook, and I like to eat out here and there, but I've been pretty miserable healthwise, so I really should cut back. For example, I ate a Thai curry out the other night - I felt like I had a terrible hangover the next day - even though I didn't drink. It was likely an IBS reaction to the heavy food, but for all I know there was wheat in the curry powder. I ask the people at the restaurant, but they likely can't truly verify the purity of their curry.

Okay, thanks again for your thoughts.

best,

Laura

Hi again,

Also another inquiry for you all: Subsequent to my diagnosis last year my younger sister got the antibody test and they were negative. But she has always been a bit sickly, and increasingly has digestive problems, and I wonder if she shouldn't pursue the Celiac connection further. She is finally going to see a GI doc.

So my question would be, is there ever a case when someone tests negative on the antibody tests but a subsequent endoscopy shows Celiac damage?

thanks again,

Laura

[Nancym]

There are a lot of false negatives but I don't think false positives are possible.

Some of us are having luck with the SCD diet in getting to the bottom of ongoing bowel issues. You might give it a look over (link in my signature). I am also intolerant of milk products.

[aikiducky]

False positives are possible but they're rare I think. I think in any case your sister should retest regularly every few years because it could be that the damage just doesn't show on tests yet. Or she could try going on the diet and see how she feels.

As to the make up, minor cross contamination etc.... it could be that you have been gluten free enough for your intestines to heal, but not gluten free enough to be completely symptom free. That would explain why you keep feeling sick. When you have been gluten free for a while you start to react more strongly to even tiny amounts.

Pauliina

[Lsquared]

There are a lot of false negatives but I don't think false positives are possible.

Some of us are having luck with the SCD diet in getting to the bottom of ongoing bowel issues. You might give it a look over (link in my signature). I am also intolerant of milk products.

Hi, I bought the Breaking the Viscious Cycle book a few weeks ago, but I'm not convinced it's friendly to irritable bowel people, especially those like me who have severe severe constiptation. I have trouble with nuts, for example, and fats in general. So I'm not doing. Maybe I should try it without the nuts.