Do I Really Have Celiac?

[confused??help]

I have been newly diagnosed with celiac (since January of this year), but I am not sure I agree with the diagnosis. I have both genes for the disease, but I have none of the antibodies (5 were tested and all 5 came back negative). My labs were done through the Prometheus Lab. My small bowel biopsy indicates that I may have "latent celiac". My symptoms include nausea, extreme fatigue, intermittent diarrhea, and occasional stomach cramping. My lab work (vit B12, RBCs, etc) all came back within normal limits. I have been strict gluten-free for 3 months and my symptoms are not really improving. Can anyone tell me how long it takes to begin to feel a difference while on a gluten-free diet? My GI doc first told me I would "feel like a new woman in a few weeks after being gluten free". I called her office about 1 month into the diet and told her I felt no difference. She then told me it may take 2-3 months to feel a difference. Does anyone have a similar experience with this? I am feeling very discouraged and confused at this point. Any advice/information would be much appreciated.

Thanks!

[T.H.]

I think first, you need to find out the exact results of your biopsy. What aspects of the biopsy led your doctor to believe you may have Celiac Disease? Villous blunting? Inflammation? I would ask for a copy of the results. A lot of folks here have had a lot of various conditions and if they know what the exact results are, they may be able to offer more help.

As far as feeling better goes, if gut symptoms and fatigue are your major issues, and not even the gut symptoms are resolving, I could think of a few reasons for that, off-hand.

- if the doc is right and you have celiac disease, you might be getting gluten contamination somewhere. How strict are you with your diet when it comes to avoiding cross-contamination? Have you looked at everything you put in/on your mouth, including makeup, teeth cleaning supplies, shampoo (if it rinses off over your face and you get a little of that in your mouth, it can gluten you), or even makeup that a person you kiss may be wearing?

Are you sharing pots and pans or cutting boards and wooden spoons with gluten eaters in your home? Do you eat out? If so, how careful are you to make sure your servers/chefs are not contaminating your food? Do you work in construction or near a bakery? Both those professions involve a lot of airborne particulates that contain gluten and can be inhaled and therefore ingested, and make you sick.

- Another reason that you might not be seeing a difference is that your doc is right but there is also something else going on. Do you still eat dairy? A large number of celiacs are lactose intolerant or dairy intolerant while they are healing, and that could be causing an issue. Many people find out they have food allergies/intolerances they were unaware of, as well. Keeping a food journal and tracking your symptoms with what you eat might help, both you and your doctor when you see her next. Common food issues I've seen with other celiacs seem to include anything in the nightshade family, corn, soy, and dairy.

There could also be an H. pylori infection, Crohn's disease, a parasite, or something like fructose malabsorption, too. Or a thyroid issue - also common in celiacs. Problems with gums (like xanthan and guar gum) or problems with annatto are not uncommon, either.

- another reason you're not improving might be that your doc is entirely wrong, and it IS some other condition. However, I'd really recommend staying on the gluten-free diet while you are looking for other answers. As a lot of us here have found out, sometimes it's a combination of things.

The fatigue would be the one I'd pay really close attention to. The gut - that can be from lots of things, including getting gluten periodically from contamination. Have you been tested for vitamin deficiencies? If you are very low in anything (which a lot of adult celiacs are), then you might not be able to get over your fatigue until you get your vitamin levels up, and that might require some vitamin supplements.

Wishing you good luck - always so much more difficult when things aren't working/testing the way they do in those theoretical textbook cases, yeah?

[Kim69]

Hey confused. I was diagnosed over a year ago and have been gluten-free since. It took months and months to feel much improvement, though the D reduced greatly. I am still really tired. It's 7pm and I am in bed!

Do lots of tests and experiment with cutting foods out of your diet such as soy and watch lactose. Consider fructose malabsorption. I react really badly to onions which have heaps of fructose in them. It can take a long time to get better. So be patient, take vitamins for all your deficiencies and continue investigating.

Good luck and know that you are not alone!