XP: Talk to me about Celiac Disease

webMistress0609 · June 2011

When I added wheat back to my diet after Ari weaned, I had a reaction to it. At first I just had a headache & muscle aches, so I didn't think anything of it, but then I started with some GI symptoms too.

I cut it out & just challenged yesterday. Fail. My mom had celiac, but she's deceased so I can't talk to her about it. She was dx'ed just a few months before she passed (breast cancer).

Anyway, what do I need to know?

(I guess I'm wondering more about testing, treatments, etc. I'm already more familiar than I'd like to be with the GF diet. LOL. But at least I'm used to it.)

Coleslawcat · June 2011

Headaches are my number 1 symptom of glutening. I do get GI symptoms, but they are somewhat mild compared to some celiac patients. But I always get a raging headache when I get gluten. I usually get nauseated too, but not always. If you want an official diagnosis you will need to go back on gluten for some time (abuot a month) so you can get a blood test and biopsy. If you haven't been eating gluten then the results will be inaccurate. There are advantages and disadvantages to a formal diagosis. I can't get life insurance now that I have a formal diagnosis, but at the same time it's a disability that has to be accomodated by law, so that can come in handy (although I haven't had any need for that yet).

julandjo · June 2011

Well, if your mom had Celiac, and your child has a wheat allergy, and you're having definite reactions to wheat/gluten... I'd just go ahead and assume you have either CD or an allergy, and live gluten free. The thing is, if you want a formal diagnosis, you're going to have to eat a lot of gluten for a long time first (anywhere between 1 and 3 months). If you've been gluten free for a while already, and you DO have a problem with gluten, your body will react more strongly than before. And once you do get a diagnosis (and there is a high rate of false negatives on the testing), the only treatment is a gluten free diet. There are no meds or anything you can take or do besides the diet. To me, and the way I feel when I get even cross-contaminated by gluten, I would die before I put myself through a gluten trial! What is important, though, is that you get a nutrition panel run by your doctor to find what, if any, nutrient deficiencies you have. And get it checked at least once a year. It's very common for people with CD to have Vit. D, B12, iron, etc. deficiencies since the damaged gut isn't absorbing properly.

Read up on celiac.com about cross contamination, skin exposure, everything you can. For a lot of Celiacs, myself included, even having gluten on the skin from lotion, shampoo, play-doh, etc. will cause a reaction. Using a colander or cutting board that at one time held gluten will also make me sick. Get rid of the gluten and feel better!

DandelionMom · June 2011

julandjo:

Well, if your mom had Celiac, and your child has a wheat allergy, and you're having definite reactions to wheat/gluten... I'd just go ahead and assume you have either CD or an allergy, and live gluten free. The thing is, if you want a formal diagnosis, you're going to have to eat a lot of gluten for a long time first (anywhere between 1 and 3 months). If you've been gluten free for a while already, and you DO have a problem with gluten, your body will react more strongly than before. And once you do get a diagnosis (and there is a high rate of false negatives on the testing), the only treatment is a gluten free diet. There are no meds or anything you

Ditto all of this.

webMistress0609 · June 2011

julandjo:
Well, if your mom had Celiac, and your child has a wheat allergy, and you're having definite reactions to wheat/gluten... I'd just go ahead and assume you have either CD or an allergy, and live gluten free. The thing is, if you want a formal diagnosis, you're going to have to eat a lot of gluten for a long time first (anywhere between 1 and 3 months). If you've been gluten free for a while already, and you DO have a problem with gluten, your body will react more strongly than before. And once you do get a diagnosis (and there is a high rate of false negatives on the testing), the only treatment is a gluten free diet. There are no meds or anything you can take or do besides the diet. To me, and the way I feel when I get even cross-contaminated by gluten, I would die before I put myself through a gluten trial! What is important, though, is that you get a nutrition panel run by your doctor to find what, if any, nutrient deficiencies you have. And get it checked at least once a year. It's very common for people with CD to have Vit. D, B12, iron, etc. deficiencies since the damaged gut isn't absorbing properly.
Read up on celiac.com about cross contamination, skin exposure, everything you can. For a lot of Celiacs, myself included, even having gluten on the skin from lotion, shampoo, play-doh, etc. will cause a reaction. Using a colander or cutting board that at one time held gluten will also make me sick. Get rid of the gluten and feel better!

Thanks for these tips. I wonder if weird cross contamination would explain why Ari sometimes has some symptoms we can't pinpoint that will fade away? He's tested + for wheat on allergy tests, but IRL he reacts to several gluten containing grains & additives, so we've been on a GF diet (not just wheat free) for awhile, but I prob haven't watched lotions & such like I should.

firefightersgal · June 2011

re: deficiencies

My dentist said that my teeth and gums are in great shape, but my gums bleed easily. He thinks that I have a deficiency in some area due to celiac and recommended a multivitamin.

anonsouthernbell · June 2011

I have been reading the G Free Diet by Elisabeth Hasselbeck and have found it to be a very helpful, easy read.

bluegfluff · June 2011

If you can go GF and feel better, I'd assume you have an issue (either celiac or gluten intolerance). If I get glutened- well, it's like the worst hangover ever. I feel tired, cranky, slurred speech, headache, nausea, all rolled into one. Getting sick usually helps, in that case. Sorry if TMI.

The only real treatment is to avoid gluten. Sorry. At least you have experience with a GF diet, so it won't be terribly difficult. This isn't terribly helpful, but there you go.

Oh- one other symptom of celiac is a rash on your elbows. Very odd. I've met people with celiac who got diagnosed by their dermatologist, of all people.

silivren · June 2011

I have been celiac for going on 2 years. I was unable to eat - completely nauseous all of the time, much like morning sickness symptoms minus the pregnancy, and I was still carrying weight around my midsection (or so I thought - it later turned out to be bloating)

I have been on a gluten free diet ever since, and I really have to check labels on EVERYTHING because gluten is in a surprising amount of things. First off - try to eliminate processed foods from your diet as much as possible. Some of the fillers used aren't listed on the ingredients, believe it or not... watch for things like "modified corn starch" ...modified with what? sometimes it's got gluten in it.

A lot of organic products tend to be gluten free. Do your research. I enjoy gluten free bread, cereal, crackers, pizza, etc. And like pp said watch for cross contamination. When you go out to a restaurant to eat make sure you ask lots of questions, ask if they have a gluten free menu and what the sauces are prepared with.

It can be challenging but I don't miss the bloating and stomach cramps that I got from eating gluten. Not only that, but continuing to eat gluten when you are celiac can cause malnutrition from malabsorption of nutritents.

Good luck!

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