Newly Diagnosed Celiac Here :)

[Shannonlass]

Hey everyone,

I'm a newby here. Just found out a few days ago I'm a celiac. Gluten antibody levels in my blood tests were sky high. Had an endoscopy last Tuesday and will have results of that in about 8 days time. Consultant told me to start preparing and reading up on a gluten-free diet as he is pretty sure my samples will confirm it. I am still pretty devastated to be honest. I was a real wheat-a-holic. All my favorite foods are loaded with gluten. It's going to be a real challenge.

My question is, how will I know if I am doing the diet right apart from alleviation of symptoms? Will I start having violent reactions to any gluten I do ingest? Will my consultant be calling me back in a few months to check my antibody levels to see if they have gone down? I want to do this right. I've been suffering from various aliments for 12-14 years, all related to this condition I see now. I want to feel what 'well' feels like. I think I've forgotten.

[Mskedi]

People react differently to accidental glutenings, but the trend does seem to be that the longer you're gluten-free, the more acute the reaction. That is definitely the case for me -- I had mild GI symptoms pre-gluten-free (but I suffered other symptoms that were pretty awful, including extreme insomnia); post gluten-free, though, the slightest ingestion of gluten has me in pain and trapped in the bathroom for anywhere from 1-4 days. As annoying as that is, I kind of like that the reaction has gotten stronger because it has completely curbed any desire to cheat. It also has destroyed my desire for forbidden foods like "real" bread. My favorite foods were loaded with gluten as well, but I have new favorite foods now that are equally satisfying -- actually, more satisfying because they taste great and don't make me ill. There are some aspects of eating gluten that I miss -- most notably, being able to eat anywhere or to order out of several choices from a menu -- but the food itself I can honestly say I no longer miss.

Even without that GI deterrent, the improved quality of life is enough to keep me on the diet. You mentioned 12-14 years of suffering -- I'm sure the memory of that will help you stick with it. I'd forgotten what "well" felt like, too, but now that I feel it again, I'm never, ever going to do anything to intentionally give it up.

I can't tell you the procedures your doctor will follow, but I know for my grandmother and cousin they did do second biopsies later to check for improvement. My sister was diagnosed based on the blood test alone (her numbers were sky high as well), and I self-diagnosed and was lucky enough to have a doctor who believed me based on my symptom improvement and my family history. With the exception of my sister, we've all had negative blood tests, which is why I think for my cousin and grandmother they did second biopsies rather than second blood tests. Maybe they'll be able to be less invasive for you since you had a positive blood test. Or maybe your description of symptom improvement will be enough for your doctor, as it is for mine.

Whatever path your doctor chooses for checking up on you, I hope you feel relief soon. This site is an excellent resource for recipes, meal-planning, tips to avoid cross-contamination, etc.

[Shannonlass]

Thank you for taking the time to reply to me. At the moment it's trying to work out what I can and can't have is the most confusing. Nutritionally I was very clued in before this so reading labels is not proving difficult. I am pretty worried about cross contamination though. My husband has decided to go gluten free as well. The only things we have in the house that contain gluten are the last few half bags of pasta and half a slice pan. Once that is finished we are almost gluten free.

I want to get started as soon as possible. How long before you 'got it right' and started to feel better?

[Reba32]

you will likely start to feel better immediately. Within a day or so of being gluten free, you should notice a difference. Within a week you should noticed a marked difference. Within a couple or few months, give or take, you should be at about the point where you go "Holy $#@%! This is what healthy feels like!".

Every day will get better and better. At first you might want to just stick with whole natural foods, rather than packaged and manufactured foods while your insides are healing.

I first went gluten free in 2008, then did a gluten challenge at the end of last year to get the positive medical diagnosis rather than my own self diagnosis. The gluten challenge was a painful, living hell. I've been gluten free, again, since December 14th. I've had a couple instances of cross contamination, which happens. And the others are correct, the longer you go without gluten, the stronger your reaction will be when you do accidently, or deliberately, eat gluten. All you have to do is remember how crappy you feel right now, and it is unlikely that you will knowlingly gluten yourself. Accidents happen though.

You're lucky your husband is supportive of you and that you can have an entirely gluten free home. Some of us are living in "mixed" homes, which makes it that much more difficult!

[mushroom]

Be sure to check all your medications and OTC supplements for gluten too. The meds will not tell you on the bottle, you will have to check online or with the pharmacist (or the manufacturer if you know it) for that information. Most supplements are labelling quite well now. Also check all your toiletries and personal care products; you will be amazed where gluten is lurking. Think lip gloss, toothpaste especially, but lots of people react to hair products and hand lotion is problematic because we handle food all the time. I assume you have bought new toaster, colander, wooden and plastic utensils which are hard to clean of gluten, tossed scratched non-stick pans, reseasoned cast iron after putting it through a cleaning cycle in the oven.

Good wishes on feeling better.

[kbug]

It's so true. It is overwhelming... I just found out I am a celiac, and it's hard news to really realize and grasp. And it's difficult to eat ANYTHING with anyone else. (Food really is a social thing!) It took me three days to notice a difference. My whole body started to work again, all of it! Within two weeks I felt like I had died and gone to heaven with no aches or pains, and this was after four years. I was lucky and found out early in life; some people don't find out for decades. Reba32 is right, when I eat gluten now my reaction is much more severe.

[T.H.]

I hope you start to feel better right away! It's definitely a bit overwhelming at first, with the learning curve, but it slowly improves. I'm on it 7 months now, and it's much easier to figure out what I can and can't eat, and recipes for that.

One thing I'd add to what everyone else has said is that you want to make sure you have a good GI doc and a good celiac friendly general doctor. There's a number of things that 'go along' with celiac, and if you don't have a good doctor, they can go undiagnosed. Like other food allergies, testing you later again for celiac to make sure you're body is healing right, etc...

Also, it's not a bad idea to look for 'odd' lists of things that have gluten. Here's a few that got to me:

You can get glutened from the chapstick (or toothpaste, or whatever) that your partner uses, if you kiss him. So having him go gluten free like you mentioned is wonderful, he'll just need to brush his teeth special if he eats gluten away from home some days.

Tea bags are often sealed with gluten, and gluten is in dry wall as well, so some construction areas can be 'gluten rich' if there's a lot of that dust around. Shampoo can be an issue, too, as whenever the soap suds are rinsed off, if any get in your mouth, you can react.

Depending on how sensitive you are (and that seems to vary a bit, from what I've read), you might react to gluten in your detergents, too. Detergent washes the dishes, then your food touches the dishes, and there you go, glutened. I think most people I know who run into this, however, have something that isn't rinsing as well as it should. or detergent washes the towels that dry the dishes, and so on.

I'd suggest reading up on what to look for if you go out to eat, if that's something you do. I ended up having to do that before I finally stopped reacting to restaurant foods. There's unexpected ways to get glutened there. Sometimes food comes 'pre-seasoned' to the restaurant, in ways that contaminate it with gluten. And unless you ask about that specifically, many restaurant employees won't consider that when they are telling you what is in the food. :-)

Good luck to you!

Shauna

Hey everyone,

I'm a newby here. Just found out a few days ago I'm a celiac. Gluten antibody levels in my blood tests were sky high. Had an endoscopy last Tuesday and will have results of that in about 8 days time. Consultant told me to start preparing and reading up on a gluten-free diet as he is pretty sure my samples will confirm it. I am still pretty devastated to be honest. I was a real wheat-a-holic. All my favorite foods are loaded with gluten. It's going to be a real challenge.

My question is, how will I know if I am doing the diet right apart from alleviation of symptoms? Will I start having violent reactions to any gluten I do ingest? Will my consultant be calling me back in a few months to check my antibody levels to see if they have gone down? I want to do this right. I've been suffering from various aliments for 12-14 years, all related to this condition I see now. I want to feel what 'well' feels like. I think I've forgotten.

[virginiagl]

I'm in the same boat you are. I just found out about my intolerances which include gluten(haven't had an endoscopy yet)and I'm overwhelmed by it all too. I have known about this for a couple of months now and I am still learning a lot of stuff I didn't know. Even as careful as I have been, I am willing to bet that I am not totally gluten free yet.

I thought I only had to be careful of the food I eat...now I am finding out that it goes way beyond food! I am trusting all the seasoned folks here though that it will get better. They are living proof it will...but for now yes it is hard to take in and there are a lot of emotional things to deal with too. Just think how lucky we are to finally know what is going on in our bodies and to have a website to go to for support and knowledge. My heart goes out to you. Good luck!