Seeking Advice on How to Cope with Celiac Disease While Healing Takes Place

Updated on March 10, 2008
K.M. asks from Jeffersonville, IN
11 answers

I was recently diagnosed with celiac disease, I have been on the diet for 7 weeks and I wake up every morning with gas pains up high in my stomach. The gas does not go away very well and I deal with it every day. Some days it makes me feel sick to my stomach. It also seems to affect my gherds. I would love to hear this is normal and that it will go away(and how long before it goes away). If you can help me, thank you.

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

Featured Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.S.

answers from Greensboro on

Hi K.. I'm J.. I have been diagnosed with celiac disease for 8 years and I'm not the best at dealing with the diet as I should but it seems like gas is a main problem with the celiac. The only thing that seems to help me is the gas reliever phasym (I don't think I spelled it right). I don't know if it is the diet or a side affect of the disease that causes it but I'm afraid to call it "normal" but it is a common complaint. It is tough to go thru and if I can help in you, let me know.

More Answers

D.B.

answers from Memphis on

Some members of my family have celiac disease and we have been gluten free for over a year now.

It is difficult at first, especially if you are trying to do run 2 households, those that eat gluten and those that don't. I started out that way, but quickly changed to all gluten free because my 18yodd would get so sick from just cookie crumbs or bread crumbs and in a house of 7, crumbs are a part of life. Besides, I don't have the time nor energy to cook 2 meals. We are a family & as a family we help one another whenever we can & this helps my sillies.

It does take a while to feel better. Some feel it right off but will have setbacks. No one is sure why but there was a lot of damage done to your body before you discovered this & it is healing at this point. Each time you get glutened or cheat (and please don't think I'm accusing you of doing that...my daughter did about a month after going GF and she paid dearly for it...doesn't do that anymore) you set yourself back so you need to be very careful. Make sure you know 100% that the food you are eating is gluten free, it is hidden in so many things.

One mistake many new celiacs make is trying to compensate for their diet restriction by increasing the amount of carbs they eat, not intentional but as more of a habit/comfort. By carbs I mean breads, pizzas, cookies, pastas, pancakes, etc. I always recommend for newbie celiacs to start off simple, meat, fruit and vegetables then slowly add in the funner stuff (yes I said funner, LOL) such as the above mentioned list. Keep a diary of what you are eating to see if you're not filling up on carbs and ignoring more of the basics.

Also, have you had your children tested? They need to be. When my mil found out she had this 10+years ago, she told us to go because 1st generation relatives have about a 30% higher chance of having it. I ignored her. So for 10+ more years, my celiac family suffered w/o us connecting the dots.

My 18yodd was the 1st to be diagnosed through observation in 2006. She went dairy free at age 13 thinking that was her issue (and in a way it was...as most celiacs are also lactose intolerant. It is advised to go dairy free for 1 year after CD diagnosis to let the villi heal enough to absorb the lactose) and she got better. But would still have issues. Then at 17, we moved to another state her Senior year of high school, broke up with a guy that turned out to be a nightmare & her condition worsenend. Her hair was falling out, she was getting thinner & finally when she said I've quit eating lunch at school because it makes me sick...it hit us and we went gluten free right then. Her health improved DRASTICALLY. She gained 15 pounds (which she needed), her hair stopped falling out, she stopped running to the bathroom. But she didn't feel like doing cartwheels in the yard really. Celiacs are low in iron, therefore always tired...something she fights every day. But she does feel so much better here a year later.

After we started the diet only then did my husband realize how much better he was feeling. When you have felt crummy your whole life you don't know you're not suppose to feel that way, you just assume it's normal. My mil was in her late 50's when she was diagnosed, went through the Army and everything with this disease not realizing that not everyone had diarrhea everyday or stomach aches.

I hope you have picked up some cookbooks, they helped me SO much. Store bought gf bread is icky (haven't found one I like yet) and EXPENSIVE. Like I said, we are a family of 7 and we'd go through 2 loaves at one sitting and that's about $10. So I make my own. LOVE Bette Hagman's The Gluten Free Gourmet Bakes Bread and Carol Fenster's Wheat Free Recipes and Menus...saved me big time in the beginning. Another GREAT book is Living Gluten Free for Dummies by Danna Korn.

And last but not least, find a local Celiac Support Group. Although your husband graduates in May, the little time you might have with them could prove invaluable. Here is a link to one in your city http://www.glutenfreelouisville.org/ I wouldn't worry about bringing a snack to that next meeting just GO. I am the President of the Memphis Celiac Support Group & we love it when new people come in & we are able to help them through this process. I am also part of a yahoogroup called SillyYaks (play on words there) but it can be overwhelming to a newbie as we are VERY talkative sometimes but I found it So very helpful. We have files of restaurants that offer gf menus, candy (Easter is around the coner) that is safe, recipes, all sorts of information... http://health.groups.yahoo.com/group/SillyYaks/

And it could be also you have not completely gotten rid of all the gluten...it is a sneaky protein. Companies are not required to reveal it in foods, only wheat and so it can be hidden in things such as 'natural flavorings' 'carmel coloring' 'spices'..one never knows for sure. I have gotten very good at calling 1-800#'s printed on the product while standing in the grocery store. Your local group can help you sort out all that & the Silly Yaks group can too. And you can always email me privately at ____@____.com if you have any further questions.

It sucks to have this for sure but my children know it could've been far worse if we hadn't caught it when we did. Untreated CD can lead to cancer and they are so so much happier and healthier now. My 18yodd said of all the diseases out there to have, this is the best one because all it requires is a change of diet to get better. And I will tell you that we far healthier now than we did pre-gf because we are more aware of the junk found in food. It's really been a blessing in disguise.

I wish you the best of luck. I know that deer-in-the-headlight feeling but it will pass and this way of life will become 2nd nature to you I assure you. Hope to talk to you soon.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.B.

answers from Nashville on

to help your GI tract heal a bit faster you could take RevitalX by Natural Factors. it is so nice and soothing, it really helps. it's gluten free. i get mine from the Turnip Truck in East N'ville. Vitamin Shoppe may have it too. they also make Detoxitech which is nice for a detox, it's very gentle and gluten free too. if you're not taking a probiotic that could be helpful too.
good luck!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.R.

answers from Clarksville on

All I can say is to stick with the diet. I am a mother of a child who is now six and has been diagnosed with Celiacs since she was 15 months old. It took a good two months on a strict celiac diet until she started looking and feeling better.
She did not cry a lot prior to the diagnosis, but she did have tons of diarrhea which is what led her to the doctors.
You may want to see if any of medications such as, gas x are gluten free to help with the pain. I know that Advil, Tylenol, and, Gaviscon are gluten free.
J.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.S.

answers from Charleston on

Try Burdock root tea. It can be found in health food stores. It is best to make your own, 5 tbsp to quart of boiling water.

Burdock is a common herb (wild plant) it most likely grows in KY.

J.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.W.

answers from Lexington on

I am sorry I do not know much about celiac disease. But I have heard that eating papaya fruit or papaya tablets that you can get from health food stores is supposed to help with digestion, gas, and heartburn. If this is something you are able to eat - you might try it. S. W.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.C.

answers from Charlotte on

Hi, K. -
Hang in there!!! I was diagnosed with Celiac 4 years ago and it took me a while to feel better. Your body has been damaged from the gluten and it will take time to heal. I can honestly say I could not take vitamins or eat dairy for a full year after my diagnosis. I actually still can't eat dairy...not sure why since my villi damage had all healed, but I do fine without it.

Debi gave you some wonderful advice. Eat simply to start, re-check all your foods, vitamins, medicines, even your shampoo, soap and cosmetics. Everything to make sure you are not getting any gluten. If you are eating out, you may want to avoid that for a while until you have healed some and are feeling better. I still don't like to go out much, but a lot more restaurants are offering gluten-free menus, so that is great news. And definitely make sure to have your 1st degree relatives get tested. Prometheus Labs in CA is supposed to be one of the best in the country for the testing. Delphi Forums has a wonderful Celiac forum with great people who offer lots of advice and lots of recipes.

Take care - I promise it gets better and before you know it, eating gluten-free will be totally normal to you and easy, and you will feel so much better!!! Let me know if you would like to chat more.

L.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.C.

answers from Clarksville on

This is a great product for digestive health and works and has a patented triple-layer encapsulation that guarantees delivery of at least half a billion live, beneficial bacteria directly to the small intestines.
http://www.shaklee.net/carrie_claypool/product/20639

I will also say a prayer for you to recover quickly.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.S.

answers from Huntington on

Here is a good website on tx. and causes. I hope you are not eating anything with gluten-wheat;pasta,bread,pizza,cereal. There is special flours you can buy for ciliac. It is rice flour,corn flour etc. But not wheat. I figured you might already know it. Even 1 crumb will set your bowels off!SO whtch your butter for crumbs,jelly. and watch your products for gluten free items. Here is the website. www.ucheepines.org there dr. is DR. agatha thrash. You can also see her on 3ABN on dishnetwork.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.S.

answers from Lexington on

K.,
celiac is an auto-immune disease. I am familiar with it as my sister has it along with fibromyalgia, cronic fatigue and irritable bowel as well. She has had AMAZING results with the vitamins we get from a wholesale wellness company we are members of. Really great timing for you if you are interested in getting a membership right now because til the 20th is only $1.00 for the year. It is also not a binding contract so you can cancel anytime. Their vitamins are guaranteed for 90 days (empty bottle!) They also carry nearly 400 products for your home and family that are all non-toxic and work amazingly. You really have nothing to lose, since there is no risk! It is so cool that your husband is going to the S.B.S.!
Our pastor who just recently was called to another church in Tn. recently graduated from there. His name is Josh Buice (they are members of this wellness company as well) and our
new Pastor is going there as well. His name is Jeremy Tong. Maybe your husband knows him. What church do you belong to? My son has recently moved up to Jeffersonville In. and hasn't yet found a church close by to where he lives. He has been driving over an hour to come to our church. We are way out in the country, beyond Taylorsville lake. Take care and please call me. I would love to help you out with you health issues.
Blessings! I will add you to my prayers!

T. ###-###-####

www.livetotalwellness.com/T.
www.workathomeunited.com/T.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

K.P.

answers from Raleigh on

sounds like an aweful food allergy. I would give up all dairy and wheat completely for 2 weeks to see if symptoms go away. If not try corn or soy. I would also try to balance your intestinal flora or good bacteria by taking a probiotic esp. Acidophilus and Lactobacillus bifidus. It might be that you have depleted your good bacteria in the stomach. Have you been on antibiotics recently?

For Updates and Special Promotions
Follow Us

Related Questions

Related Searches