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Help Is Anyone Out There?

rjne2nd

By rjne2nd
in Coping with Celiac Disease

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rjne2nd Rookie
rjne2nd
Posted

I am a pretty newly diagnosed Celiac and I could really use some encouragement! Since I have been gluten free I am some much better but... it seems i have many other foods and things that bother me. I am 47 and was just diagnosed.. will I get better if I am diligent? Do I need to give up other foods? (dairy,, ouch) I have been diagnosed in the past with fibromyalgia. Will it get better? Do you all take lots of vitamins since your diagnosis? i would appreciate any and all advice! My GI DR said nothing about coping with this disease just you have celiac disease, see you in a year! How will I get the encouragement I need to live this new life in an alternate universe?

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rjne2nd Rookie
rjne2nd
Posted
  • Author

I guess I dont know how to use this site as i have yet to have anyone reply to a question that I have had! Is there a short course on how to use this site?

angel-jd1 Community Regular
angel-jd1
Posted
I guess I dont know how to use this site as i have yet to have anyone reply to a question that I have had! Is there a short course on how to use this site?

Your 1st post was at 10:41 and the second post asking if anyone was going to answer was only 10 min later at 10:51. A lot of people work or are busy during the day, so it will most often take longer than 10 min to get a reply. Be patient and hang in there!! Someone will post soon.

-Jessica :rolleyes:

a celiac.com board moderator

badleyr Newbie
badleyr
Posted
I am a pretty newly diagnosed Celiac and I could really use some encouragement! Since I have been gluten free I am some much better but... it seems i have many other foods and things that bother me. I am 47 and was just diagnosed.. will I get better if I am diligent? Do I need to give up other foods? (dairy,, ouch) I have been diagnosed in the past with fibromyalgia. Will it get better? Do you all take lots of vitamins since your diagnosis? i would appreciate any and all advice! My GI DR said nothing about coping with this disease just you have celiac disease, see you in a year! How will I get the encouragement I need to live this new life in an alternate universe?
Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to this site. Yes, you appear to know how to post just fine. However, you gave it exactly ten minutes from posting to saying nobody is responding! Most people are at work, or making/eating lunch right now. There are plenty of forums where it takes days to get a response (if you get one at all). Here you usually get one within hours.

This site is amazing when it comes to getting support. Be patient, and you'll get lots of responses.

Your doctor sounds pretty typical. He probably knows precious little about nutrition, and even less about a gluten-free diet. Which is obviously very unhelpful to you.

You may still be getting gluten without knowing it. Here are some guidelines (and I am sure others will think of more tips): You need to read all labels, to make sure you don't get any gluten from wheat, barley, rye or triticale (a hybrid of wheat and rye). That includes wheat starch, barley malt, and oats may not be a good idea, either (some people with celiac disease can't tolerate oats per se, but mostly they are a problem because in America all oats are contaminated with wheat).

You need to check all your personal care products, like shampoo, conditioner, lipstick/lip gloss, lotion, soap, bubble bath, toothpaste etc. for gluten. It can be wheat germ oil, barley extract or oat bran (avino) or other things. Read labels or call the manufacturer.

You need to buy yourself a new toaster for your gluten-free bread, if you eat that. You also need to replace any scratched non-stick pans, wooden cooking spoons and cutting boards, and if your strainer is out of plastic, buy yourself one only for gluten-free pasta (you absolutely can't get rid of all the gluten in plastic strainers and toasters to be safe).

It would be wise for you to eliminate dairy as well, as that is usually a big problem for people with celiac disease, as could be soy and/or corn.

Also, vitamins and prescription medications can have wheat starch as a filler, or even an ingredient (vitamin E can be derived from wheat germ oil).

I was diagnosed with fibro as well. I now know that the awful joint and back pains, as well as gastrointestinal distress (IBS, yeah right) were caused by lectins (check out Open Original Shared Link), and the terrible muscle pains and brain fog came from salicylates (Open Original Shared Link).

The terrible fatigue was caused by undiagnosed Addison's disease and hypothyroidism, as well as those intolerances (which possibly caused those problems to begin with).

I used to be on codeine 24 hours a day for the unbearable pain. I don't need painkillers any more unless I eat something I shouldn't have (not necessarily intentionally), or for the occasionl headache.

It is usually best not to replace gluteny items with gluten-free ones right away, but rather to eat only fresh foods prepared by you. Like meat, fruit and vegetables, to give your insides a chance to heal.

I hope this is some help.

badleyr Newbie
badleyr
Posted

The early gluten free days are the hardest, however in the beginning i tried juicing and eating as less cooked foods as possible and it really worked. The immune system of persons with celiac disease is very low so consuming raw vegetables is a plus. Avoid grease please you will see a big difference in the way you feel. :rolleyes:

Ursa Major Collaborator
Ursa Major
Posted
The early gluten free days are the hardest, however in the beginning i tried juicing and eating as less cooked foods as possible and it really worked. The immune system of persons with celiac disease is very low so consuming raw vegetables is a plus. Avoid grease please you will see a big difference in the way you feel. :rolleyes:

It depends on your level of damage. I was completely unable to eat anything raw for six months when starting the gluten-free diet. I had to cook all vegetables and fruit to the point of well cooked (almost mushy), or I would get horrible stomach cramps and diarrhea within minutes of eating them. Salad was completely out for that time. Even now (probably due to some permanent damage from eating 'poison' for over 50 years) I can only tolerate limited amounts of raw foods.

I didn't try juicing vegetables, which might be excellent, because it eliminates the fiber that could be the cause of the irritation.

You need to experiment to find what works for you.

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Guest kivmom3
Guest kivmom3
Posted

Your doctor, unfortunately, is very typical in his response and treatment of this disease. My first doctor said the same thing and I changed doctors to one who is more knowledgeable about the disease. That really made a huge difference!

I would eliminate dairy for at least 3 months. I'm still waiting to hit the 3 month mark to reintroduce it, slowly. Some people also have problems with soy. I would just watch what you eat and elimiate other foods that make you sick that way. I keep a food diary to help me find other food problems.

As for vitamins: I take Freeda vitamins since they are gluten free. There are other vitamins on the marked gluten free as well, just read the labels.

It does take up to 3-6 months to start to feel fully better. Don't get discouraged!!! Eat easy/plain things for now. Eat veggies, fruit and meats that are fresh, not from the frozen isle. I would keep it simple for now and then add other foods gradually. Spices: beware can contain gluten. This site is great for finding support. There is also alot of information just on the internet to help you out as well. One book that is good is Gluten Free for Dummies.

Stay positive and hang in there, it gets better :)

Gg

rjne2nd Rookie
rjne2nd
Posted
  • Author

Thank you for all your responses. When I asked if I was doing this posting thing right it's because I really didn't know. I Don't know anything about this forum thing. I posted a few times before back in July and august and couldn't figure out how to see if I got any replies. So thanks again for the encouragement.. nice to know others have gone before, where i am only beginning to travel!

Yellow Rose Explorer
Yellow Rose
Posted

When I first started in April I wasn't sure how to post at all. I was lurking around for 3 months before I figured it out. What worked well for me was to read every post for those months and I am up to page 79. I found everything I was wondering about somewhere on this site and everyone was so encouraging that I feel I can actually deal with this now. There is a wealth of information on this site and all you have to do is find the time to read. Welcome to the board and hang in there it does get better.

Yellow Rose

7-cody Apprentice
7-cody
Posted
When I first started in April I wasn't sure how to post at all. I was lurking around for 3 months before I figured it out. What worked well for me was to read every post for those months and I am up to page 79. I found everything I was wondering about somewhere on this site and everyone was so encouraging that I feel I can actually deal with this now. There is a wealth of information on this site and all you have to do is find the time to read. Welcome to the board and hang in there it does get better.

Yellow Rose

Yep exactly, most conversations or questions have already been answered. I often use the search feature and read up on previous conversations. You can learn a lot by doing so and it's quicker as well.

sfm Apprentice
sfm
Posted
It depends on your level of damage. I was completely unable to eat anything raw for six months when starting the gluten-free diet. I had to cook all vegetables and fruit to the point of well cooked (almost mushy), or I would get horrible stomach cramps and diarrhea within minutes of eating them. Salad was completely out for that time. Even now (probably due to some permanent damage from eating 'poison' for over 50 years) I can only tolerate limited amounts of raw foods.

I didn't try juicing vegetables, which might be excellent, because it eliminates the fiber that could be the cause of the irritation.

You need to experiment to find what works for you.

I also could not eat raw vegetables for awhile, and almost no fruits at all.

Brown rice was a godsend for me when my stomach wasn't doing well - and still is when I get accidentally 'glutened'.

Some people do have to give up dairy at first, but can eventually have it back when their digestive systems have healed. It turns out I can't have casein (a milk protein) either, so dairy is a permanent no-no for me. I think I miss it more than gluten!!

Try not to eat too many processed gluten free foods at first. Basically, anything that can be hard for the body to digest may be too much for your system right now, until the damage begins healing. So try sticking to meats, potatoes or rice, fruit if it doesn't upset your stomach, and vegetables (lightly steamed if they bother you raw). It takes time but you'll get used to noticing what feels okay to eat and what doesn't.

And keep coming back to this website - it's loaded with information.

Sheryll

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