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Newly Diagnosed With celiac disease

Ogie Oglethorpe

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Ogie Oglethorpe Newbie
Ogie Oglethorpe
Posted

Hello All,

I was just diagnosed with having celiac disease after years of feeling like garbage, my question is how long does it take to start to feel better after going gluten free? I am tired of feeling horrible and look forward to having my life back.

Also I tried Redbridge beer today from Budweiser, gluten free and not too bad.

Dan

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happygirl Collaborator
happygirl
Posted

Hi Dan,

Welcome to the board! I'm happy you have found this site.

Congratulations on getting a diagnosis---sometimes, that is the hardest part. Can you tell us a little bit more about your symptoms, and how you were diagnosed? Blood test? Biopsy? etc.

Like with most things with Celiac, there isn't a great, standard answer. It really varies from person to person, and depends on a lot of factors (how long you were an undiagnosed Celiac, how malnourished you were, how strict you are on the diet, how much damage you had, and just other factors that we don't know about). Some people start feeling better within a few days, but it still takes awhile to fully heal. Others don't see a lot of difference for a few weeks....others a few months. In general, it takes the body and the intestines awhile to heal, to start aborbing properly, to build nutrient levels back up, etc....

Best of luck, and let us know what we can do to help. I certainly hope that your symptoms improve quickly and you can get back to normal life!

Laura

Ogie Oglethorpe Newbie
Ogie Oglethorpe
Posted
  • Author

I was diagnosed with a biopsy, I have basically all the symptoms,bloating,fatigue,depression,weakness,etc., and my family is getting real tired of me just wanting to be left alone. I have had these symptoms for years although I would at least have my good days. During the past year or so there has been no such thing as a good day. I finally switched doctors after the one I was seeing would say that it was IBS, just learn to live with it, even after an initial endoscope and coloscopy. I just had another endoscopy and the results were positive for celiac disease and H-pylori.

CarlaB Enthusiast
CarlaB
Posted

Dan, it takes time to heal and the time varies from person to person. The best thing you can do is eat a simple, healthy diet full of whole foods -- meat, eggs, fish, veggies, fruit, brown rice. The easier you are on your system, the quicker you'll start feeling better.

I would also avoid eating at restaurants until you are feeling better. I, even now, only eat at restaurants with gluten-free menus, with a few exceptions (local restaurants, not chains).

Restaurants with gluten-free menus: PF Changs, Carrabas, Cheeseburger in Paradise, Outback, Bonefish Grill, Maggianos (at Maggianos the chef comes to your table and is trained in food allergies).

Fast food -- Chick-fil-a grilled chicken salad and waffle fries (double check to see if they have a dedicated fryer, most do) and Wendy's chili, baked potato, and Frosty. Other than that, I won't touch fast food ... too high risk.

You should be treated for the H-Plyori, are you?

Now that you've been diagnosed with a serious disease, I would hope your family will be more supportive than they were when it was "just" IBS.

Ogie Oglethorpe Newbie
Ogie Oglethorpe
Posted
  • Author

Guys, thanks for your help...I was treated for the H-pylori with a drug combo called Prevpak, basically previcid and two antibiotics that I can't recall. Also I do appreciate the suggestions for foods and any possible restaurants. Sometimes getting my family to understand how I feel was very difficult but thanks to sites such as this it is getting much better. It's good to know that with proper diet and willpower that there is a possible light at the end of the tunnel.

I live in the Butler Pennsylvania area, any recommendations for restaurants in that area would be appreciated.

This is all new to me, I didn't have no idea how many foods contain gluten...unbelievable.

happygirl Collaborator
happygirl
Posted

Its ok, we were all surprised, stunned, shocked, horrified, etc. as you are. Why does it have to be in so much?

One of my favorite sites:

www.celiacdiseasecenter.columbia.edu. Great, reliable information that will be good to share with your family, if you need it. Plus, it is a respectable source--Dr. Green is one of the leading Celiac physicians, researchers, experts, etc.

For pasta, find Tinkyada rice pasta. It comes in all shapes and sizes. It is wonderful---we serve it to non-Celiacs! www.tinkyada.com for more info. You can find it at some grocery stores, health food stores, and online. I can't live without it.

For casseroles: most traditional soups have gluten. But, Progresso's "Creamy Mushroom" soup is gluten free...just heat on stove and reduce, or add a bit of gluten-free flour to thicken. Or, Health Valley makes a Cream of Chicken and Cream of Mushroom that are both gluten free.

Progresso's Thick and Hearty (not traditional!) New England Clam Chowder is gluten free.

Coke, Pepsi, etc are gluten free.

The 2006 Food Labeling Law requires that all products list any wheat clearly (i.e., if its modified food starch, and doesn't list wheat, then it is safe. But if it says modified food starch-wheat, then it isn't safe). Plus, we have a list of companies that will clearly list any wheat/rye/barley/malt/oats, etc (i.e., will not hide them under natural/artificial flavorings, etc). The combination of these two things will make it easier to read labels and not "wonder." Posts 1, 2 and 9 are the most helpful. Open Original Shared Link Make sure to always check the back of the bag/container of the product to see who manufactures it, because many are on this list.

Hope this helps!

pnltbox27 Contributor
pnltbox27
Posted
Hello All,

I was just diagnosed with having celiac disease after years of feeling like garbage, my question is how long does it take to start to feel better after going gluten free? I am tired of feeling horrible and look forward to having my life back.

Also I tried Redbridge beer today from Budweiser, gluten free and not too bad.

Dan

hey dan , i too was just recently diagnosed with celiac ,good luck with the gluten free diet. also i found two other gluten free beers one is brewed in milwaulee named New grist and it tastes great. the other one is called Dragon something i cant remember the full name. man what a relief it was to find them. again good luck

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smertins Newbie
smertins
Posted
hey dan , i too was just recently diagnosed with celiac ,good luck with the gluten free diet. also i found two other gluten free beers one is brewed in milwaulee named New grist and it tastes great. the other one is called Dragon something i cant remember the full name. man what a relief it was to find them. again good luck

Hi all!

My husband was just diagnosed this past week with Celiac. Believe it or not, I am so excited about this diagnosis! Finally, after 3 years of hell, I can do something to help him!

Being from Wisconsin, he is a big beer drinker, and right away found the New Grist that was mentioned. He said it is good.

I hope you don't mind that I post here. I'm not a celiac, but I feel in a way I am, as we are now in the process of adjusting our family's diet. We have 2 kids, and will watch them as well.

Did any of you have your children tested for the gene that leads to a propensity for celiac? What is the conventional wisdom about testing kids that show no symptoms?

Sabrina

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hey, Dan, welcome aboard! I'm a Pittsburgher, too.

The Cranberry Bravo restaurant is terrific--they have gluten-free pasta! The manager and then the chef will come to your table and tell you what they can make gluten-free (they make their sauces twith cornstarch instead of with flour!). Outback Steakhouse is also good, and if you ask the waiter at CHeesecake Factory, the chef will come to your table and talk with you aboout substituting rice for pasta in various dishes. Also, their Godiva Cheesecake is gluten-free--and amazing!

The Cranberry Giant Eagle is the place to go for gluten-free goodies--they're the only one that has a separate gluten-free section. Once you're thinking about baking your own bread and making your own gluten-free mixes (a huge $-saver), you can buy rice flour, tapioca starch, and potato starch for 69cents a pound at Lotus in the strip district downtown. You can buy jowar flour (which is sorghum flour) at Indian grocery stores (there's one on Three Degree Road in the North Hills).

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi Dan

Welcome aboard! It is good you know what was making you so sick, everything will get better from here on out. There are very helpful people here and someone can almost always answer your questions. I hope you feel at home.

sherylj Rookie
sherylj
Posted

Hi all!

My husband was just diagnosed this past week with Celiac. Believe it or not, I am so excited about this diagnosis! Finally, after 3 years of hell, I can do something to help him!

Being from Wisconsin, he is a big beer drinker, and right away found the New Grist that was mentioned. He said it is good.

I hope you don't mind that I post here. I'm not a celiac, but I feel in a way I am, as we are now in the process of adjusting our family's diet. We have 2 kids, and will watch them as well.

Did any of you have your children tested for the gene that leads to a propensity for celiac? What is the conventional wisdom about testing kids that show no symptoms?

Sabrina

Sabrina,,,Your family is so lucky. Especially your husband to have your support. Getting all the glutins out of the house will really help him stay on track.

The book I am reading "Celiac Disease: A hidden epidemic" suggests having all sibs and children tested. My eighteen year old has agreed to be tested as she is anemic and having trouble maintaining a healthy weight.

sherylj Rookie
sherylj
Posted

r at CHeesecake Factory, the chef will come to your table and talk with you aboout substituting rice for pasta in various dishes. Also, their Godiva Cheesecake is gluten-free--and amazing!

oh,,,I really need to find a cheesecake factory!!! :P

CarlaB Enthusiast
CarlaB
Posted
Hi all!

I hope you don't mind that I post here. I'm not a celiac, but I feel in a way I am, as we are now in the process of adjusting our family's diet. We have 2 kids, and will watch them as well.

Sabrina

Welcome!

You are more than welcome to post here! We have other loved ones of celiacs who post.

Carla

sherylj Rookie
sherylj
Posted
r at CHeesecake Factory, the chef will come to your table and talk with you aboout substituting rice for pasta in various dishes. Also, their Godiva Cheesecake is gluten-free--and amazing!

oh,,,I really need to find a cheesecake factory!!! :P

I'm from MIchigan,,,and I guess I'm going to have to go to Ohio or Chicago for cheesecake!! good thing??? I have relatives close to Columbus,,,,so hey wonder what they are doing next weekend!!

CarlaB Enthusiast
CarlaB
Posted
Also, their Godiva Cheesecake is gluten-free--and amazing!

Yes, but sadly, they admitted that they use flour in the making of the gluten-free cheesecake. :angry::angry: That ruins it for us. You might want to double check on it, I'm basing that statement on a post here a while back about a letter someone received from them.

tarnalberry Community Regular
tarnalberry
Posted

Welcome! Like the others said, it may take a while for you to feel better, and you have to be 100% gluten free, but you'll get there. It may take months (or longer for a few), but you will get there!

Ogie Oglethorpe Newbie
Ogie Oglethorpe
Posted
  • Author

Wow,

I finally had a chance to check the board here again....your responses have been great! Thanks everyone for the tips and suggestions(especially the beer ;) )

Dan

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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