Celiac Disease Support Group

Hi,

I have only just been diagnosed with celiac disease, this is after years of being very unwell and suffering from kidney infections and 7 miscarriages and 2 ectopics. Which I nearlly died from last Aug. The doctors made me feel like an hyperconderiac. I have suffered for 18yrs with this and just being told that I have IBS and I'm prone to kidney infections so therefore I had to go on antibioctics permanent. I have been so unwell over the last few months that I decided to go private and get some answers and thank god I did. I would love to talk to other people with this disease. Sarah

I forgot to say that I was told a year ago that I was actose intolerent. I'm allergic to most everything now! lol! Eggs, coffee,ham, some nuts, lambs lettuce, dates, raisins, bananas. wines, lager, bitter. The list goes on and on! Sarah

Hi Sarah & WELCOME! You are in the right place! While I'm sorry for the reason that brings you here, we are glad you found us.

I, too, lived for years being told I had IBS. I had a miscarriage too. While your story is much worse, I do feel your pain. I am glad that at least now you have discovered a very large piece of the puzzle.

I am also lactose intolerant and allergic to corn (which I still eat but must limit the quantity). Lager makes sense since it's made from glutenoues grains. After you've been off gluten for a while you may find you are able to add some stuff back. Your insides need time to heal, literally. And your intolerances may improve.

Best of luck and glad you made it here!

I'm also just very recently dx'd. I already find the diet to be onerous. I've been dx'd w/IBS since I was 14 and I'm 53 now. That's a long time of the constipation/diarrhea roller coaster. My gastro told me after my endoscopy that my small bowel looked like it had been to war.... ooh fun!

I hope to learn from you all and maybe add to the info as I learn.

H.

The hardest part, to me at least, about staying gluten free is really all the junk they put in so much stuff! Salad dressing with gluten? Yep. Almonds with gluten? Yep. It's a shame that companies have turned to gluten to fill out so many products. And because they do that, it makes our lives harder. One way I helped myself was really becoming an excellent cook. I say that because that meant I read recipes. Reading recipes helped me learn how things are made. Knowing how things are made has helped me tremendously if I am eating outside of my own home.

Harobed, you and sarah will both become label-reading experts. It's a frustrating, but very important part of our lives. Always ask questions when you go out and don't be embarrassed about sending the waiter back to the kitchen with yet another question.

Hang in there Sarah. I want to say it gets better. But instead I will say you become smarter, healthier and feel so much better in the long run. Yes, you will become a label reader. My kids hate going to the grocery store with me "must you read EVERY label?!" Yes. actually I do. Because the consequences are quite painful if I do not. I also am lactose intolerant. Which makes me loads of fun to take to a restaurant!

I have been able to find(palatable, believe it or not!)gluten free foods to replace all the gluten filled foods that I can't eat. And I LOVE to eat! But now I don't feel like I'm missing out on anything.

I have discovered that almost all of my past and current health issues are due to me having celiac disease. When I was little and had horrible stomach aches the doctors told my Mom to ignore it. I just wanted attention. I now want to tell those doctors thanks a lot for ignoring me. I nearly starved myself to death while simultaneously eating tons and tons of food. The rash I could never get rid of that they blamed on nerves and anxiety. Strange. I was never anxious or nervous. Just tired all the time. I too suffered from miscarriages,an ectopic pregnancy and recently I had to have a hysterectomy So learn all you can and don't be afraid to ask a hundred questions. It's always better to know more then less

My experience this evening has taught me that my experience with celiac difficulties is not over, so I hope that means I'll be visiting this forum more often and noticing new threads before they're 3 months old.

I was diagnosed for the first time in 2004 and once again by a new GIMD (gastroenterologist who didn't know I had already been diagnosed) in 2009 or something like that not very long ago cause my dad had my daughter in the lobby playing with their funky toys during my endoscopy. I adopted her in 2009, so it couldn't have been too long ago.

ANYWAY, I'm also lactose intolerant, but also allergic to milk, eggs, lettuce, walnuts, peanuts, sage, grass (I never planned on eating grass), dog spit (I never liked that either), and I'm sure I'm leaving out a few. Oh, and I recently had a hysterectomy. So this thread is particularly interesting to me because I find that we all seem to have the same thing!!!!! Perhaps I need not mention that I've spent a lifetime being accused of being a hypochondriac, so I rather like having a firm diagnosis inadvertently verified by two doctors completely unaware of each other's existence!

Ah, yes, in these past 8 years, I've become an extremely fast label reader. People still accuse me of being too extreme about how careful I am with what I put in my mouth, but the consequences are more extreme than a few annoyed friends. You do have to keep on top of label terminology. I don't know about other countries, but here in the United States, you need to read the ingredient list. Just because something says dairy-free, for example, doesn't mean it's free of dairy. Look for dairy ingredients in the ingredients list. Also, be careful of ingredients that don't actually say what they are. Gluten can be lurking within them as well. Fortunately in this case, if "Gluten Free" is printed somewhere on the package, you can trust that. However in my case, "vegetables" might include lettuce, "tree nuts" might include walnuts, and so on, so I need to be careful there too.

Actually, this thread is so old, I wouldn't be surprised if you've already gotten a pretty good handle on this by now.

I was gonna say some other stuff, but I forgot. You all probably know it already anyway. So, I'm gonna try to be around more often! And I wish you and everybody else here the best!

Good point SomethingDifferent. But things labeled gluten free are also not completely free of gluten. It can contain up to 20 ppm and still say gluten free on the package. And I have found that even if it says "gluten free" on the package, if it says "processed in a plant that also processes wheat" I get sick. Also watch out for maltodextrin. It is derived from wheat unless otherwise stated so. If it's not it will say "corn maltodextrin" etc. So basically the only way to be completely safe is to only eat whole foods. To me that equals water and a tomato.

But I have found boars head makes a lactose free cheese! It's real cheese that melts and is delicious and hasn't caused me any problems. But how it is lactose free and real cheese boggles my mind.

I'll double-check to make sure maltodextrin is on my list of things to watch for. I have a huge giant list! I'd share it, but it also includes my food allergies, so it wouldn't apply to everybody here, and I've forgotten what allergies some ingredients come from since they're all on the same list with my gluten stuff.

I understand what you mean about gluten reactions to gluten-free stuff. A food diary should help you identify those. I for example get terribly sick when I eat gluten-free oats. Therefore, I have to check for oats and oat products in things that say gluten-free. Also, I have an allergy to milk, so I have to check for dairy in lactose-free and casein-free products.

I am a strong believer in whole plant foods, but I also have a sister who seems to be a firm believer in the FDA and highly processed foods. She watches for specific things, like high fructose corn syrup and such, but since our family has so many eating events and I'm the only gluten-free member, everybody tries to be nice and makes gluten-free stuff and they're so careful to avoid my allergies that I feel compelled to eat their highly processed oily foods to avoid offending them. When my daughter and I eat alone, we eat whole plant foods.

I've figured out ways of making everything anybody else eats to my satisfaction, but I never know in time about these dinner parties and such, and usually people don't even seem to know what food will be made for them until the last minute, so I don't have time to make my own substitute dishes. That probably shouldn't bother me, but I just hate it when everybody is eating pizza or lasagna and I'm eating potato soup or haystacks.

Joining a Celiac Society can be very helpful. And of course the dietitian as well. Mind you I saw one of those and she was DREADFUL. ie things like for lunch half a tomatoe, three leaves of lettuce etc. Crazy. Saw another guy and he was great.

"But I have found boars head makes a lactose free cheese! It's real cheese that melts and is delicious and hasn't caused me any problems"

Whilst processed foods and leave a good bit to be desired. We with Celiac and various food allegers(sp) and very lucky. I too do not have a clue how they get the lactose out of the cheese.

And of course there are a great many options now for gluten free foods. A lot due to processing.

Jennywren

Jennywren