Newly Diagnosed...just A Little Support?

[SpiderD]

Hi all

I was diagnosed with coeliac disease last week. Bit of a shock since I was told several weeks previous that my blood results were negative, I didn't have it. Turns out the nurse told me the wrong results!

I have so many questions, I don't have time to ask the doctor. I'm seeing a dietician in a couple of weeks but I can't wait - I'm so hungry all the time, I just can't seem to find enough to eat, and I'm feeling pretty weak and miserable. And my symptoms are obviously still here. I'm feeling positive that now I'm diagnosed I can finally do something about it, but this has changed everything and I'm feeling a little lost.

I suppose I just came here to talk to people who've been through it, so I don't feel quite so alone!

[Jenniferxgfx]

I just stopped eatin gluten 3wks ago or so, and I've also been SO HUNGRY. after a long period of never having much hunger and constant gut pain, this is a huge change!

I've started consciously eating more carbs (omg tostitos are a lifesaver) and more protein, because I realized my go-to foods were all fruits. (pre-gluten-free, fruit was the only thing I could eat that didn't hurt. I didn't know i had celiac.) I think I just wasn't getting good energy. I'm loving refried beans, salsa, and corn chips, or hummus.

Good luck with the nutritionist!

[love2travel]

You've come to the right place! It is a tough thing to be told you have celiac disease. It takes a while to sink in. It is a process that includes anger, grieving, etc. When I was told I have celiac disease I too was stunned because I did not have the common GI symptoms. I went ahead with the biopsies for a few reasons - to ensure I truly did have it (at that time I did not want to believe it!). Plus my doctor advised me to get a colonoscopy at the same time to rule out anything else. All along I felt that perhaps I was given the wrong results, too. As a major food person/cook I was in denial. When he confirmed the diagnosis it took me a couple of months to get it. That was back in February and I have been strictly gluten free ever since. As I do not feel sick from gluten I have to be excruciatingly careful of cross contamination and so on.

After I went gluten free I had withdrawal for 2-3 weeks. I felt famished always, had headaches, the shakes...not pleasant but not horrific, either. This is quite common. Dealing with it mentally can be challenging as well. Now you have to think about every single thing you put into your mouth. I had to switch vitamins and toothpaste. The kitchen utensils, etc. must be scrubbed and/or replaced. You must get a new toaster if living with gluten eaters. Since we are dealing with malabsorption I was told to take 5000 ug Vitamin D3 (liquid to absorb better), Vitamin B12, Vitamin B complex and Zinc. Perhaps your dietitian will tell you that as well. She may also recommend probiotics for the first few months. I was also told not to have oats - even certified gluten free oats - for two years to give my gut time to heal first.

It can be incredibly overwhelming at first but after several months it will become just a regular part of your daily life. Not to say it is always easy - it is not. The most difficult part is dealing with others in social settings as so many people have no clue (including many doctors). Attending events such as weddings, potlucks and parties can be difficult. Going to restaurants is rough so many people (including me) recommend not doing this until you are comfortable with what you can/cannot eat, cross contamination and so on. I have learned far more on this board than from my medical people all put together. We are the experts as we are the ones who must deal with it constantly! Do some searching on here. There is some pretty interesting stuff.

Feel free to ask tons of questions. There are extremely helpful people here! And you are NOT alone. If you ever feel as though you are, feel free to vent here.

[Takala]

More protein, more good fats, more vegetables. Fewer grains. Beans and potatoes and nuts/seeds, avocados, coconut, olive oil, good chocolate, eggs. Peanut butter. Rice pasta and rice cakes.

You'll get there. Promise.

[SpiderD]

Thanks so much. It's a bit scary realising how much this all entails. I used to think that coeliac was the same as wheat intolerant, that I just had to avoid wheat but a little wouldn't hurt, then the doctor explained that even a minute amount could hurt me. I live with two people who both eat gluten, and now I don't know if I can even trust my own kitchen!

Thanks for the advice though - I'm still alive and feeling less weak today which is nice! Really just looking forward to feeling better, but at the same time wondering if I'm being strict enough...

[Jenniferxgfx]

Just to clarify, some intolerants can't stomach even a crumb of gluten either. But yes, be very diligent!

[SpiderD]

Just to clarify, some intolerants can't stomach even a crumb of gluten either. But yes, be very diligent!

How do you find out how sensitive you are? Trial and error?

[lilu]

You could also try skipping "replacement" products for a while, until the hunger eases. These foods tend to be made with highly absorbable, refined alternative ingredients (like white rice flour, etc), which enter the bloodstream quickly and can lead to a blood sugar spike that leaves you feeling hungrier than before. Try snacking instead on nuts, cheese, peanut butter on veggies, etc. The combination of high protein and fat will slow the digestive process down and help you feel satisfied longer. Initially consider main meals that are whole food based and include sufficient protein.

[Jenniferxgfx]

How do you find out how sensitive you are? Trial and error?

That's my approach so far, But I'm sure others have better advice. I admit I feel like a lab rat in my own life.

[T.H.]

How do you find out how sensitive you are? Trial and error?

Pretty much.

I've really seen a main couple approaches, usually.

1) Eat some gluten-free processed foods, be careful with gluten cross contamination during cooking, careful with eating out and vitamins and such. If there's any problems, get more careful and potentially cut out problem foods.

2) Ditch most processed foods, be super careful with gluten cross contamination and extremely careful with eating out and vitamins and such. Once healed, slowly introduce processed food/ potentially get a little less careful with gluten cc, and pay attention to when things make you sick, and when things are actually okay.

Personally, after my own experience, I'd vote for number two. It's more of a shock to the system, and the food is much plainer at first, which is not fun. But I think that it makes healing more likely as it eliminates a lot of the potential issues. It also means a lot less label reading, if you are going with plain fruits, veggies, and meats, at first.

The first option may (but doesn't always) involve getting only partially better and then having to drop more foods and getting stricter and stricter. It seems, I dunno, frustrating, in a way? Because it's still hard, but you might not be getting completely better. In my family's experience it felt like, 'but I'm doing ALL of this! Why am I not better?!'

If you go super strict at first, when you slowly start adding in processed foods, like maybe a gluten-free cookie or cracker or something...it is AWESOME, because you haven't had any of it for a while.

Eating the processed food right at first just feels like you are eating rather crummy substitutes for the food you can no longer have.

I had to drop food right away, and then added it back in. My daughter, diagnosed 2 weeks after me, did it the other way around. She turned out to be more sensitive, so many gluten-free foods made her sick and she had to keep cutting back and cutting back. It was really frustrating, and I think it resulted in her being sick for longer, really.

But...one way that can help you figure it out, a little bit, is to keep a food journal. Pay attention to what you eat, and when, and record how you feel. It's not only a good way to find out how sensitive to are, but to find out what brands are safe, what may be making you sick every time (like eating out at grandma's, for example), or if you have any other food issues (some of us do).

Also, when you start out? Most of us are somewhat lactose intolerant in the beginning - the parts of the villi that are damaged by the disease are the areas that make the lactase to digest lactose. For most of us, that will heal and you will be able to have dairy again. But it can often be helpful if you avoid dairy for the first few months.

And you usually want to avoid gluten-free oats for a year or so. About 10-15% of celiacs are what is referred to as 'oat sensitive.' We react to all oats, even gluten-free ones, just like they are wheat, rye or barley, essentially. It's recommended to avoid oats at first, until you have the diet all figured out and can know when you're eating safe food. Then you can try it later, once everything is a bit more settled, you know?

If you like to cook, there's some great Greek, Indian, and Asian dishes that involve plain ingredients, but are flavorful and naturally gluten free. gluten-free soy sauce = awesome.

Also a nice recipe section here where people share all sorts of information on what they're making and using for foods. It really helps, in the beginning!

Good luck, and here's wishing you a wonderful, smooth transition!

[SpiderD]

Shauna...thank you! That's really helpful. It's been a hard couple of weeks, especially since I've got quite a busy work and social life and it's hard to plan ahead for all my meals! I had a lot of things already booked in from before I got my diagnosis, like a special dinner out, family bring-and-share reunion, and maybe I wasn't being as strict as I should be.

I've tried one or two gluten free replacement foods but I'm not overly fussed about eating them at the moment - actually I'm a huge fan of rice and I don't want to tarnish the memory of real bread for now! I'm seeing a dietician week after next (why couldn't it be sooner!) so I hope they will have some good advice for me along the lines of how strict to be.

At the moment I still feel a bit rubbish each day, usually in the afternoons at work, which is how I always used to feel before I went gluten free It's so hard to know if I'm still letting gluten sneak into my food, or if it's just part of the normal process.

Did other people find that their symptoms remained the same for a few weeks, or do you get different symptoms after coming off the wheat?

[lilu]

Did other people find that their symptoms remained the same for a few weeks, or do you get different symptoms after coming off the wheat?

It seems everyone has a different experience after going gluten-free. Many people feel better and just keep feeling better, but most have ups and downs, And for some it can take a long time to really feel batter.

Just remember that there are multiple types of healing going on at once, but each may take a different amount of time...

... You've got whatever immediate symptoms you feel after eating gluten. Those often clear up pretty quickly once gluten-free.

... You've got gut healing and regrowth of villi. This takes much longer - I've seen posts in which people have said their docs told them everything from 3 months to a couple years. This is a pivotal one because this kind of damage is in the focus area of malabsorption, so until your gut heals, your body is still operating from a vulnerable state and you may not be getting all the nutrition your body needs.

... You've also got healing going on in the systems of your body that have become malnourished as a result of the malabsorption.