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Old 02-12-2008, 02:38 PM   #1
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tired47 HB User
?? about celiac disease



Hi everyone,
I am being tested for Crohn's and celiac disease due to some "erosions" on my small bowel and malasborption syndrome/problems. My Dr. has suggested I start the gluten free diet... I am alittle overwhelmed. Where do I start and what words to I look for to make sure it is "gluten free"?? I saw my calcium/magesium vitamins had gluten on the label... wow!!! I need to know what to look for on labels because I want this to work for me. Thanks for any and all help.

 
Old 02-12-2008, 04:17 PM   #2
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Re: ?? about celiac disease

I am going through the same thing Would you mind sharing your symptoms, blood tests and anything else to tell me about your story to this point. I had a positive RA factor and positive antibody for gluten. I have had fatigue, joint and muscle pain, dairrhea, bloating, anxiety, nausea, and back pain. I know very little other than I am very overwhelmed by the diet I need to follow too and I have no idea where to start.

 
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Old 02-12-2008, 07:33 PM   #3
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Re: ?? about celiac disease

The main things that you would look for are wheat, rye, and barley. Wheat starch is in a lot of things, so is barley malt. Also look for modified food starch, sometimes it is made from wheat. There are a few companies which will clearly mark if their products have wheat in them, one of those is Kraft. I can't think of the others off the top of my head. Also, some people newly diagnosed with Celiac also have issues with lactose intolerance, so you might want to avoid dairy for a little while. Also, make sure you look at your soaps, lotions, makeup, etc.

There are a lot of really good books out there as well and a lot of helpful info on the web. Good luck! It can be overwhelming at first, but it gets easier with time.
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Old 02-15-2008, 07:32 PM   #4
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Re: ?? about celiac disease

Hi! I am still waiting on "official" results,could be crohn's or celiac or something else.I had blood tests, but awaiting news. The GI dr. found "erosions", villa abnormalitiesof small bowel on capsule endoscopy. My symptoms are fatigue, lack of appetite, weight loss of 35 lb in one year and diarrhea. Also very low levels of nutrients- low calcium, vitamin D, magnesium ( causing heart problem), and potassium. I am on mega vitamins but still levels keep dropping and I feel terrible. Anyone with any ideas to help us all thru this time are so appreciated. Thanks so much and good luck.

 
Old 02-16-2008, 06:44 AM   #5
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Re: ?? about celiac disease

I think one of the best things to do is to try to find a support group. There are quite a few online and depending on where you live, there are usually local ones. They are great resources for recipes and help figuring stuff out.
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Old 02-16-2008, 10:01 AM   #6
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Re: ?? about celiac disease

tired 47- What blood tests did you have done? My IGa came back elevated and I go to gastro this coming week I also had low normal b12 and low normal ferritin. My symptoms are on the earlier thread. I know how you feel and I feel terrible. Do you get the cramps and joint pain? These have been the worst for me. I thought I had RA. I don't, but that is how bad I have been feeling. Has a gluten free diet made you feel better? I have been on one for 3 days and I still feel bad. Let me know how long you were gluten free before you felt better. Thanks

 
Old 02-16-2008, 08:52 PM   #7
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Re: ?? about celiac disease

Hi! Thanks everyone for any help you can give me/us. I had a series of blood tests... not sure what. I usually ask, but I am so tired of all this, it has 14 months and we are still going round and round. The tests were for crohn's and celiac I was told, and should get results next week. I started the gluten free diet last week, do not feel better, actually worse than ever. My symptoms are severe fatigue, nausea, diarrhea, generalized weakness, chest pain/tachacardia. I was diagnosed with low ferritin,low D, low potassium,calcium and magnesium, all at various times. All the dr. has done is given me more vitamins to take. I want to solve the malabsorption rather than take more pills. I saw the Gi dr. on Friday and she said no matter the amount of vitamins it will not help if I am not properly absorbing them. She of course said talk to your family dr. about IV therapy.... family dr says ask her( GI). And the cardiologist said I need to get this resolved to solve my heart arrythmia which he believes is caused by lack of magnesium/potassium. Anyone out there... how do I get stop the madness and get someone to do something??? I have begged.pleaded,ect... and this is all so frustrating. Getting in to see another Dr. without referral takes weeks/months..... any help is SO appreciated. Good luck to you all out there, Let me know how you are doing.

 
Old 02-17-2008, 01:20 PM   #8
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Re: ?? about celiac disease

Does anyone is know of a good malabsorption specialist in San Antonio, Texas??? I am frustrated and want a Dr. who is agressive in diagnosis and treatment... it has been 12 months now and we are still one test at time... waiting 1-2 months for results and followup only to find nope, not that- next test. They say I definitely have a malabsorption problem... just what????

 
Old 02-17-2008, 01:22 PM   #9
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Re: ?? about celiac disease

Tired, try to find a local support group. They are usually the best places to find local Dr's that are good at treating/diagnosing Celiac Disease.
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Old 02-17-2008, 05:59 PM   #10
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Re: ?? about celiac disease

Quote:
Originally Posted by morrisun View Post
Tired, try to find a local support group. They are usually the best places to find local Dr's that are good at treating/diagnosing Celiac Disease.
Dear morrisun,
Thank you. Great idea!!! I will definitely do that!!!!

 
Old 02-18-2008, 02:01 AM   #11
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Re: ?? about celiac disease

You might want to look up celiac support groups online. Many of them offer lists of products and ingredient names to look for that contain gluten, as well as lists of gluten-free foods. There are recipe sites that are food intolerance oriented. There are also lists of restaurants that are gf-friendly and not-so-friendly.

A lot of supermarkets also have lists of gf foods carried in their stores. Believe me, this helps.

I've created a 3-ring binder that I take with me to the store. It has lists of gluten-free foods as well as lists of "hidden" sources of gluten. I'll also print out copies of recipes to make sure I can get all the necessary ingredients. Reading labels has become a religion. Manufacturers put that stuff in everything. I've even found it in tea, of all things.

Also consider looking up ingredients on your grooming/health products. A lot of people accidently get glutened by using a lotion and then touching their mouths or when shampoo runs into their mouths while washing their hair. Gluten can be found in toothpaste, mouthwash, etc. Medications can contain gluten. Makup is another source of possible glutening.

You'll also want to take a good look at your kitchen. Take a look at your cookware if you use non-stick. If its really scratched up, gluten can hide in the crevaces. I ended up replacing most of the plastic stuff in the kitchen since it was pretty well used (yay dollar store!). Didn't worry about the stainless steel cookware at all. Scrub down all surfaces really well.

If you have a mixed household (gluten and gf) then assign the person who still uses gluten a specific place where they can prepare and store their food. Make sure they're aware of cross-contamination issues. If you have the resources, maybe have different sets of gluten and gluten-free cookware. Its not necessary, but nice to have.

Something else to consider - a lot of celiacs also have problems with other foods as well. The most common are dairy and soy. It can take several weeks to several months to feel better once you're on the gf diet. The damage didn't happen overnight and you're not going to get well that quickly either.

I don't have celiac (that I know of) because I decided to do an elimination diet on my own and found the intolerances (gluten, dairy, corn, refined sugar). Neither of my docs wanted to pursue further testing at that point. All my GI said was "if it makes you sick, don't eat it". Yeah, thanks doc.

I think that's a common problem that many people with food intolerances find. The docs tell us not to eat something, but then don't give us a clue as to how find it in hidden sources on labels or what to use instead. And most dietitians/nutritionists don't have much of a clue either.

It's overwhelming at first. I know. I've only been on a modified diet for 4 months now. However, once you get the basics down, it becomes second nature. It really does.

You might considering going on a whole foods diet for awhile. That way, you won't have to worry about gluten in your diet. Its also much easier on your digestive system and will allow it to heal. A lot of folks have problems with gf products because they're just as processed as the good ol' gluteny stuff they used to eat.

Hope this helps.

Last edited by Nyxie63; 02-18-2008 at 03:55 AM. Reason: forgot something

 
Old 02-18-2008, 06:32 AM   #12
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Re: ?? about celiac disease

Quote:
Originally Posted by tired47 View Post
I started the gluten free diet last week, do not feel better, actually worse than ever. My symptoms are severe fatigue, nausea, diarrhea, generalized weakness, chest pain/tachacardia. I was diagnosed with low ferritin,low D, low potassium,calcium and magnesium, all at various times. All the dr. has done is given me more vitamins to take. I want to solve the malabsorption rather than take more pills. I saw the Gi dr. on Friday and she said no matter the amount of vitamins it will not help if I am not properly absorbing them.
tired47,

I can appreciate your frustration. I see two things here: One, there is some underlying reason why you are not absorbing nutrition. Two, your symptoms can indeed be as a result of malabsorbtion (=malnutrition). But, until you find out the underlying cause, your GI doctor is correct -- all the supplemental vitamins in the world will not solve your malnutrition problems.

If your malabsorbtion problem is a result of celiac disease (damage to the intestines because the body cannot handle gluten), then going on a gluten-free diet will help your body to heal itself, and over a few weeks or months you will start to feel better. It is not an instant cure, as with removing a food that you are allergic to. It will take time for the damage to your intestines to heal.

Regardless of the underlying reason for your malabsorbtion, once you have identified the reason (which may or may not be celiac), it will still take time for the malnutrition to be corrected.

The other posters have given you good advice.

I have been following a gluten-free diet for 10 years or so. It does get easier as time goes by to remember to read labels (on every product!) and learn how to cook with new ingredients. But there are lots of positive results -- I feel much healthier, and I have had a chance to try new foods that I would never have tried before. My current favorite is quinoa, but I also love buckwheat and amaranth. You will find things that you like as well.

Good luck on tracking down your problem.

--Rheanna

 
Old 02-18-2008, 09:27 AM   #13
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Re: ?? about celiac disease

Quote:
Originally Posted by tired47 View Post


Hi everyone,
I am being tested for Crohn's and celiac disease due to some "erosions" on my small bowel and malasborption syndrome/problems. My Dr. has suggested I start the gluten free diet... I am alittle overwhelmed. Where do I start and what words to I look for to make sure it is "gluten free"?? I saw my calcium/magesium vitamins had gluten on the label... wow!!! I need to know what to look for on labels because I want this to work for me. Thanks for any and all help.
It's very hard at first but once you get used to it it becomes much easier and natural. Your first stop in the beginning should be a natural foods store, and also look in the natural/organic section of your normal food store. They have gluten free products there such as pastas, etc. Many pre-packaged food options. I suggest doing this first simply because in the beginning many people have such a hard time adjusting to the diet. It's easier to start off on the pre-packaged things while you re-learn how to cook for yourself.


If you find that you're feeling hungry a lot, think fresh. You can eat lots of fresh foods like fruits and veggies. I think eventually though you'll have an easy time with the diet.

 
Old 02-19-2008, 05:07 PM   #14
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Re: ?? about celiac disease

Dear All,
Thank you so much for your help... I sincerely appreciate every response. As I said I am a little overwhelmed... I know I can do the diet, no problem. I just want to get a diagnosis. The Dr. has tested me for crohn's ( my son has it) and celiac... I am not sure which is worse. It has been decided I definitely have a malabsorption disorder ( after 1 year), just which one. Guess you all have felt the same frustration so thanks again for all your support. I have found a support group in my area, so that will help. And I have found a chiropracter, nutritionist,accupuncturist holistic Dr. who says she can help me. I am willing to try anything, especially since my GI dr. ( a malabsorption specialist) has not been very sucessful in getting me well. Keep those helpful tips coming... we can all share in their sucess.

 
Old 02-21-2008, 10:00 AM   #15
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Re: ?? about celiac disease

Quote:
Originally Posted by tired47 View Post
I started the gluten free diet last week, do not feel better, actually worse than ever. My symptoms are severe fatigue, nausea, diarrhea, generalized weakness, chest pain/tachacardia.
I didn't finish reading the rest of the posts, but saw this and wanted to comment.

If you started the GF diet and didn't feel better at least a week after, I'd say that you don't have Celiacs. I was diagnosed with Celiacs almost 5 years ago and I noticed a huge improvement in how I felt physically and mentally just after about 5 days on the Gluten Free diet. I was actually in denial about having Celiacs until the results of the diet were undenyable.

For it to make you feel worse leads me to think it's something else. I know everyone is different, but logically if you are no longer putting things in your body that are toxic for it, then you should feel better, right?! What did your doctor say when you told him the GF diet was having the oposite result for you?

If you continue with the GF diet, then make sure you're not just cutting out what you know you can't have, replace them with things you can eat. That was my big mistake when I first started out. I ended up losing about 20 pounds in two months b/c I only cut out what I knew had gluten in it; which prior was about 90% of my diet! I basically ate rice cakes, grilled chicken and raw fruits and veggies.. which is good and all.. but doesn't have a lot of substance. There are still things in carbs and starches that the body does need. Once I found a Whole Foods store I found all these Gluten Freen products that replace some of the things I had removed completely; rice bread so I could have sandwhiches again, rice crust pizza, rice pasta, even tuna fish with absolutely no additives and lots more. Now the cost of it all is my biggest problem!

Education is the best thing you can probably do for yourself right now. And theres a lot more information out there now then there was 5 yrs ago!

The 5 key things I avoid and look for on lables are wheat(flour), barely, oats, rye and caramel coloring. Oats are on the list b/c of cross-contamination on farms/in plants. Some brands will say "Wheat Free" or Gluten Free" right on the label.

Sorry.. I got a little wordy with this!! Take care. If you haven't, already, then I hope you soon have some answers and get on track with getting yourself better!

 
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