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mdono

By mdono
in Coping with Celiac Disease

Recommended Posts

mdono Explorer
mdono
Posted

Hi all

just wanted to say hi. i was diagnosed last week with celiac. it is somewhat frustrating, but if it improves my quality of life, then i am more than excited to know i have control over it. my worst complaint is my stomach distention; sometimes it's huge! and also fatigue. i'm only six days into my gluten-free lifestyle, but am anxious for my swollen tummy to go down!

advice welcomed.

~meghan.

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bmorrow Rookie
bmorrow
Posted

Meghan,

Welcome to the board! You will learn alot of valuable information here. I know that I have. I can't imagine how I would have handled all of this without being able to read about other people's experiences. You will get better, but it will take time!

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Meghan,

Welcome to the board! ;)

We have all travelled down the road you are on right now and we are all here to answer any questions you have, and you will have many. It may seem overwhelming at the beginning, but once you start to reap the rewards of this diet, you will be determined even more to maintain a gluten-free diet.

Just remember, all of us have made mistakes, so don't knock yourself when a mistake happens. Myself, I thought I was TOTALLY gluten free, couldn't figure out why I continued with the symptoms, after much sleuthing, finally found out that the Gas-X tablets I was taking like candy for my gas/bloating actually had gluten in them!!!! :o

There are a bunch of really supportive, knowledgeable and friendly people here who will help in any way we can!!!

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Hi welcome to the board. :D

https://www.celiac.com/st_main.html?p_catid=12

This link provides safe and forbidden lists for celiacs. You will find that gluten can be hidden under alot so you have to be careful.

Kraft and certain other brands make life easier for us...they do not hide any gluten in their ingredients...if their products do not say wheat,rye,barley,oats on them then they are safe.

I would also recommend finding yourself a good probiotic and some good enzymes and liquid vitamins. I am a big fan of these things.

It took me about 3 months to really see a difference and for some people that is more and for some less so don't get discouraged if you don't feel better overnight...you'll get there :D there is light at the end of the tunnel :D

If you need anything don't hesitate to ask B)

mdono Explorer
mdono
Posted
  • Author

Thank you all for your support!!

Kaiti, what probiotics and liquid vitamins do you recommend? and where did you buy them??

and for anyone that might know, is the stomach distention due to swelling? and do fatigue and depressive symptoms trail off when the physical symptoms disappear?

I also feel like my throat is affected. Has anyone else noticed this?

Thanks again.

Meghan.

KaitiUSA Enthusiast
KaitiUSA
Posted

There are very many symptoms that come with celiac(over 200) so when your body heals at it's own pace your symptoms will start to go away. I take Liquid Vitamins Plus by Utrition and they are ultra absorbable as well. I take probiotics and enzymes by Enzymatic Therapy(they list on the bottle what they are free of) You can get these at a health food store...and if you can't find them let me know and I cen get a link for you or something.

If your fatigue does not clear up in a few months I would recommend getting your thyroid checked. Celiac and thyroid disease are very much connected. Fatigue was one of my symptoms with that and I was just diagnosed with Graves disease(hyperthyroid) last week. My doctor told me there are rarely celiacs with just celiac...so of course they tested me for anything even remotely connected with celiac.

If your fatigue is just due to celiac however it will get better with the diet and as your body progresses :D Good luck

mom Rookie
mom
Posted
;) Hello New Member--I have been gluten-free since Nov. of 04. Sometimes I will have a spell of knowing that I get must have had something with gluten. I have noticed that even peanuts will cause my ankles and hands to puff up and sometimes my stomach, also. I am also wondering about dairy products causing me some minor issues at the time, so its been a learning experience the last few months.
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ianm Apprentice
ianm
Posted

Welcome aboard. It takes more than six days but you seem to have the right attitude. It takes time but it is worth it. A lot of people recommend liquid vitamins and I also suggest liquid minerals. I take the New Vision brand and they really help. They're kind of pricey but I found I only need an ounce every three days. these have helped me more than the vitamins even though I take those too.

Ianm

rmmadden Contributor
rmmadden
Posted

Welcome aboard!

I'll repeat what others have said here and that is it takes time to heal. Patience is the key. The damage that we all have did not pop-up over night so the healing process is going to take time.

An alternative to the liquid vitamins is juicing. I drink an apple/celery/carrot juice mix that we make about 3x per week. You can juice almost anything and if you mix it right it's not bad tasting.

Best of luck!

Cleveland Bob B)

SueD Newbie
SueD
Posted

I'm also new to the gluten-free lifestyle. Tested positive at Enterolab although all the bloodwork done by my doctor was normal. I've tried to follow a gluten-free/DF diet for the last 10 days. My mind feels clearer but my body feels like a limp dishrag and I had constant, localized abdominal pain. I went out of town over the weekend and ate gluten -- the pain disappeared! Does this make any sense to anyone? Am I just too impatient to feel well again?

KaitiUSA Enthusiast
KaitiUSA
Posted

Your body has to adjust with no longer having the gluten in your diet. That will go away when your body adjusts. You can't expect all problems to go away overnight. It took me 3 months to really feel a difference and then a few more months to get back to normal. This varies from person to person but you must be patient :D Since you are new to the diet you may want to print out a forbidden list for celiacs.

https://www.celiac.com/st_main.html?p_catid=12

This will provide you with a list. Also you need to check things such as lipsticks ,toothpastes, etc. to make sure you are not "glutening" yourself. Gluten is hidden under many things so the list will help you as a guideline while you are learning the ropes of celiac. Good luck and if you have any questions just ask you definitely came to the right place :D

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hello, Meghan,

I just wanted to tag-on here, to also wish you well in your learning process about Celiac Disease.

Whenever I see 'new here' listed on a post, I always feel happy for the new person...I was 'there' in January of this year...seems like a year ago now, because there has been so much to learn, and lots of emotions to deal with, too...

There is a lot of great info here to 'digest'...pardon the pun...but, you'll find that with each new piece of information you learn/apply, your health will improve.

Congrats on making it to this place, and on your first post!

Best wishes

Gina :)

LaurieAnn13 Newbie
LaurieAnn13
Posted

KAITI -

REALLY?!?!?! I do not think I have ever heard before that celiac's often have more than just celiac.... Does that mean we should all get tested for many other things?!?!

KaitiUSA Enthusiast
KaitiUSA
Posted

If you are having symptoms I would really suggest you get checked.I was suprised when the endocrinologist told me that ...after that I went to my regular MD and asked him and he said that was true....I got checked for a lot of autoimmune disorders that come with celiac so I'm sure you can ask for that but it also depends how you feel and so forth. I personally would get checked for other things as well initially so they don't miss anything...better to catch beginning stages then late stages

SueD Newbie
SueD
Posted

I'm using gluten free soap, bu can somebody give me some brands for gluten free toothpaste and detergent? I don't have DH rash but I do get itching intermittently. Thanks for your help. I've already learned so much from this site.

KaitiUSA Enthusiast
KaitiUSA
Posted

I use Crest toothpaste which is gluten free..Colgate is also gluten free. Arm and Hammer detergents are gluten free. 7th generation which is a more natural detergent is also gluten free(my mom likes that brand)

Do you have gluten free shampoos and lotions as well? If you get itchy from gluten containing products you should not use them(obviously) I had the same problem when I first started the diet. Also you may want to check cosmetics(most importantly lipstick) Good luck :D

Rikki Tikki Explorer
Rikki Tikki
Posted

Hi Sue:

Welcome to the site! You will learn a lot of useful information.

Toms of Maine is a gluten-free toothpaste.

Sally

KaitiUSA Enthusiast
KaitiUSA
Posted

Most of Tom of Maines toothpaste is gluten-free.According to a paper I got : The Natural Orange-Mango Anticavity Plus Whitening Flouride Gel and the Natural Outrageous Orange-Mango Anticavity Flouride Toothpaste for Children are NOT gluten free. There are a few other products of theirs that are not gluten free but most of their products are. :D

Maggie1956 Rookie
Maggie1956
Posted

:D Hi Meghan & SueD.

Nice to have you with us. This is a great board. You'll get a lot of help and support when you need it.

Sounds like you're on the right track already. Remember, we all have little accidents occasionally, and don't be down on yourself if it happens. :D Just start again.

gabrielle Contributor
gabrielle
Posted

Hi Meghan!!

I'm also new to the gluten-free lifestyle, and I just want to tell you that it may seem hard at first, but it gets easier. There are still so many good things you can enjoy, but you must be open to try different things (that was my problem!! I just wanted a pb and jelly on wheat toast!) I hope you start to feel better soon, just as i have- and this site really is wonderful to learn things about your body and talk to people just like you!!!

Best of luck to you,

Gabrielle

mom Rookie
mom
Posted

Hi Meghan

Everything will get easier as you go furthur into the gluten-free lifestyle. I am still fairly new in it myself, so I learn something new everyday. Best of everything!

Mom :)

  • 2 years later...
sally123 Newbie
sally123
Posted

Hi,

I was just reading the toothpaste information. My son was diagnosed a year ago, but he continues to have stomach problems. He is also lactose intolerant so it is impossible to know what causes his stomach aches. I thought we were doing a good job, but now I found out medicines and toothpastes are suspect.

How do you know if a perspribed medication is OK. He was just on antibiotics. Are there ingredients to look for in medicines?

Another question is caramel color and food starch. I just saw a presentation from Dana Korn who insisted they were now considered OK. Then I see in various other publications that they are not since you don't know if they are producedin the U.S.? Does anyone know?

thank you for your help,

Sally

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    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
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      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

      By Scott Adams · Posted

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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