I'm Not Sure If I Have Celiac. Please Help/testing Question/infertility

[mamajane]

hi, everyone,

i'm brand new to the board, just registered tonight. here's my story. any advice would be welcomed as i am struggling with stomach pain/cramping and need relief as soon as possible!

i'm 40, was diagnosed as "wheat sensitive," after a food panel blood test from my naturopath. around, may/june, i completely adhered to a wheat-free, mostly egg-free diet for a while, felt great. then, over the past month or so, i decided to "lighten up" on myself for some reason. i ate bagels periodically, among other things. i have now had full-blown diahrrea for two weeks straight, even after i have been mostly gluten free for a day or more. i just don't know what initially caused the diahrrea or what keeps it around because it doesn't seem particulary reflective of my diet on any given day. i thought the diahrrea was from a G/I bug at first, but the pain/diahrrea hasn't gone away. i haven't had a fever or nausea. a couple of days ago, i thought it was getting better (i was even a little bit constipated), then back came full-blown diahrrea and terrible stomach cramping.

here are some of my questions:

i'm calling my dr. first thing in the morning. what do i ask for first, what blood test? do i need a biopsy to determine if i have celiac? do i need to go straight to a specialist?

is everyone w/ gluten sensitivity a celiac? how can you tell?

are steel-cut oats and oat cereal okay to eat if you are sensitive to gluten and/or celiac? maybe even when i've thought of my diet as gluten-free, it hasn't been when i ate oatmeal or oat products.

i need to settle my system to try (for the second time) to conceive a child through IVF. if i am a celiac, how long do i need to follow a gluten-free diet before attempting IVF? i have heard that celiac disease is connected to infertility, so i want to do what i can to eliminate that as an obstacle to conception.

thank you for any advice or feedback.

mamajane

[darkangel]

You'll probably have more luck with a gastro doc than a general practitioner. And a GP may want to refer you anyway.

I'd keep an open mind at the moment and don't assume you have celiac disease. Your symptoms could have a variety of causes. I'd just describe what's going on and mention the wheat sensitivity and that you felt your symptoms improved with an elimination diet... see what he says. You don't want to miss other possible problems he might be able to identify.

There's a spectrum of reactions out there. You can have a wheat allergy or you can be "gluten sensitive" without having a celiac disease diagnosis. You can read more about it here: Open Original Shared Link

There's a lot of controversy about oats. There are tons of articles on this site alone. Here's one: https://www.celiac.com/st_prod.html?p_prodi...-05107373132.7b

It's possible to be sensitive to oats regardless. I find I feel better when I eliminate all grains. You could eliminate them for a couple of weeks, then add them back in and see how they affect you personally.

[CarlaB]

If you've been gluten-free or even gluten-lite, that will affect the testing.

Most oats are contaminated, so be sure you get a brand that is considered to be gluten-free. I use McCann's. As already mentioned, many celiacs are sensitive to the oats themself, so I would not eat them for a few months after going gluten-free.

[April in KC]

Some people get more sensitive to gluten after they go gluten free for a time. It could be that your current problem is due to this type of increased sensitivity. Or it could be something coincidental is happening unrelated to gluten.

You can ask your physician for a "celiac panel" of blood tests - there should be about four tests in the panel - antigliadin IGA, antigliadin IGG, tissue transglutaminase, and endomysial antibodies. About 20% of Celiacs have IGA deficiency, so that can cause false negatives on some of those tests. You can always post back here if you need help with results interpretation. Note - You should be eating a gluten-containing diet (several servings a day for several weeks) consistently prior to testing, otherwise you could have false negatives. Your period of time off wheat might affect your testing somewhat. If you get negative results, you can still try a strict gluten free diet to see if it helps you again.

If one or more of these tests come back positive, your physician will probably refer you to a GI for an endoscopy with biopsies. These might come back positive or negative. A solid diagnosis is important to some people, especially over time and as doubts creep in, but many people never get the diagnosis and still find benefit in the diet.

Also, when you do go gluten-free again, take the time to start checking all of your foods. I assume that you know about soy sauce - and corn flakes - and Rice Krispies - all containing gluten?

Good luck on the IVF.