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Just diagnosed with Celiac Disease

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Celiac Disease
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Posted 6/15/2009 8:01 PM (GMT 0)
I am usually over on the Lyme forum but my doctor called me last week and told me I had a high index for celiac disease.

He said the normal is 12.5 and mine is 45.5 so he wants me to elminate all gluten until I at least see him again next month.

I have been reading up on this and don't have any of the main symptoms although I know there are many. I was diagnosed with Lyme over two years ago and he is thinking the gluten intolerance is contributing to my symptoms as I have been sick for almost 5 years.

It is going to be a challenge to change my entire diet but I have been sick for so long I am more than anxious to see if this makes a difference. If anyone has any suggestions to help me on this I would love to hear them. I have to go shopping tomorrow so I will have something in the house I can eat! Just got back from vacation so this will be my first chance to shop for gluten free products.

I think it is great there is this forum on here especially since I no nothing about this disease yet. I hope to hear from all out there who have experience with this. Thanks..oh and if someone could share their symptoms with me so I could compare mine it would be much appreciated.

Kim

Posted 6/15/2009 10:31 PM (GMT 0)
Try not to panic about the diet.  You can eat meat.  You can eat vegetables.  You can eat rice and potatoes.   You can eat eggs.

I find breakfast the most challenging meal of the day. I've been diagnosed celiac for 11 years now.  Van's makes gluten-free waffles that aren't too bad.

If you find you MUST have pasta, Bionature rice pasta has proven to be my favorite. 

Study up on the do and don't lists for gluten, some of the entries may surprise you.

If you are just doing the diet as a test for a month, I'd just keep it a simple healthy diet of protein, fruits, and vegetables for a few weeks and see how you feel.

Posted 6/15/2009 11:04 PM (GMT 0)
Hi Kim,
A gluten free diet can be overwhelming at first but once you get the lingo down and know what to look for on the ingredient labels it will become second nature to you. If you are just starting out and still learning about what gluten is and what it is you need to avoid, I would suggest starting out with fresh meat, veggies, fruit. or anything that says "gluten free". That's the easiest for now.
I've been gluten free for almost 6 years. I like Mrs. Leapers corn and rice pasta, Kinninnick breads, bagels, cookies, pretty much anything they make is awesome!!! Gluten free pantry is a good brand and the Vans waffles are very good. Amy's organic has a lot of gluten free frozen foods including mac-n-cheese, veggie lasagna & pizza.
Here are a couple of links that will help you know what is safe and what's not:
http://www.celiac.com/articles/181/1/safe-gluten-free-food-list-safe-ingredients/page1.html SAFE LIST
http://www.celiac.com/articles/182/1/unsafe-gluten-free-food-list-unsafe-ingredients/page1.html INGREDIENTS TO AVOID
http://www.celiac.com/articles/183/1/additional-things-to-beware-of-to-maintain-a-100-gluten-free-diet/page1.html OTHER THINGS TO AVOID

I hope some of this helps you. Feel free to ask more questions!
Posted 6/15/2009 11:43 PM (GMT 0)
Thank you for the great suggestions. I appreciate you jhmom and GrizleeB for taking the time to post your thoughts. I was also wondering how you were diagnosed. I had it done by stool sample but was reading that isn't a reliable test. I had the whole blood profile done a few months ago and the entire thing was negative. I have no gastro symptoms at all..

I guess he wants me to try the diet for a while and see if I feel any better. I taking the list of things you both suggested to the store with me. I know chex cereal has a couple of gluten free ones. It is going to be hard for me to stop the things with wheat. I am sure I will be on with more questions!

Kim

Posted 6/16/2009 1:46 AM (GMT 0)
Hi Kim,
I went through test after test for a year (blood and other) and everything came back negative. I finally decided on a stool panel test with a private lab and it was positive. I immediately started the gluten free diet and could tell a difference within a couple of days. The abdominal pain I had been having for over a year was gone! Some of my other symptoms before going gluten free was cramps, abdominal pain, diarrhea, nausea, weight loss (40lbs in 2 months) and generally felt terrible. I continued to have some of the other symptoms after going gluten free but found a couple of years later it was caused by lupus.

Thank you for mentioning Chex, I have not looked at it in years and had NO idea they had gluten free choices now, that is awesome. They also have some great recipes on their website.

I think it's great your doctor is having you try the diet after labs tests were negative. In my opinion that is the one true test and less invasive (sp?).
Posted 6/16/2009 1:08 PM (GMT 0)
My husband was diagnosed through a biospy during an endoscopy. I am of the understanding that is the best way for diagnosis to be accurate. There are lots of things to consider about celiacs that many people don't know. For a young woman it can cause fertility problems. I met a nurse who was diagnosed but did not believe she had it because she didn't always have syptoms. I suggested she start following the diet because it could cause her so many problems with other facets of her life, she was just newly married and does want children. So learn all you can and be properly diagnosed. MK
Posted 6/16/2009 1:40 PM (GMT 0)
Some physicians believe Celiac Disease can present with Neurological symptoms instead of GI symptoms (web search on "Gluten Ataxia" for example). GI biopsies may be negative in these patients.
Also, there is a skin rash called Dermatitis Herpetiformis that has been found to be a skin manifestation of Celiac Disease.

Also, total IgA (blood test) should be checked because if a person is IgA deficient, then the other blood tests for Celiac may be false negatives...to get around this, make sure blood tests for Celiac include the total IgA, the IgA and IgG antigliadin antibody tests, and the IgA tissue transglutaminase test. Some doctors also like to run the IgA and/or IgG anti-endomysial antibody blood tests too.
Posted 6/16/2009 3:02 PM (GMT 0)
The only true diagnosis can be made with a small bowel biopsy to test the villi in your small bowel. I was diagnosed after several years of anemia and IBS diagnosis. Diagnosed by biopsy.

Later, as a blood test became available, I'd moved to a new area and the GI there performed the blood test and I was negative. I insisted on another biopsy to be sure. Before he did the bx he told me he'd call me on Friday and if I had celiac disease, he'd eat his hat. His message to me on Friday was that he was sitting at his desk munching on the brim of his Fedora.

Thankfully, being gluten free is now all the rage. This means more and more products are on the market which is finally nice to see.

I was last tested 2 years ago with endoscopy and told my small bowel was "beautiful" :) Which means the diet is working!
Posted 6/17/2009 2:10 AM (GMT 0)
Here is where the controversy begins, I don't agree that the biopsy is the "true diagnosis" and let me tell you why. First of all my GI doctor ran every test imaginable including blood test and everything was negative, I continued to suffer and my poor doctor was at a loss. My endoscopy showed some patchy inflammation but not enough for a dx. I was sick and I mean sick, I lost 40lbs in 2 months and could hardly eat anything!
I chose to use the private lab that did stool panel test and it was positive. I suppose if I were to have continued to go to the doctor and endure more tests eventually things would have should up positive but I didn't know that for sure and I couldn't take it anymore. The one true test is trying the gluten free diet, only those who cannot tolerate gluten will notice an improvement within a week or so (for people w/ GI symptoms). Yes I think you should see a doctor but when you reach the end of the rope try the diet.
I do not mean to offend anyone, this is something I am very passionate about. I was continually told I had a severe case of IBS and was given an rx for anti-d. I don't think doctor's took me serious until after they saw the weight loss. Sometimes a doctor can suspect different things but won't give a dx especially one of celiac without seeing it in black and white!
Posted 6/17/2009 11:50 AM (GMT 0)
I am trying the gluten free diet but I don't have any GI symptoms. I am being treated for Lyme and I have chronic fatigue and burning/twitching/pinpricks in my feet and calves.

I went shopping yesterday and bought some gluten free stuff like cereal and energy bars. I didn't want to get too much since I am not sure if this is going to make a difference. He wants me on this for a month but am not sure that is long enough.

I went on some of the sights and read up on what is okay to eat and some lists of things that were safe.

My doctor just did the stool test kind of randomly since I have been sick so long. Not one doctor had ever mentioned celiac or gluten intolerance ever. He told me on the phone that if the test had been negative it wouldn't necessarily mean I didn't have it but since my index was high then it is highly likely I have one or the other.

I agree that if I notice a difference on the diet then the test was accurate.

Posted 6/19/2009 6:26 PM (GMT 0)
It seems you don't have to have stomach issues to have Celiac disease. The chronic fatigue and pinpricks could be from Celiac. I was told that some individuals have nerve problems but no other signs. General mills has (in my opinion) taken the lead and has converted rice chex, corn chex and honey nut chex to gluten free. They also own betty crocker and now offer gluten free cake, brownies, and cookie dough mixes.

My understanding is that it could be a "crap" shoot as to whether the GF diet will clear up all your symptoms because the longer you have had it and damaged your body the higher risk of not healing. I have only been diagnosed about a month and I am crossing my fingers that all my symptoms clear up. Good luck with the diet... it definitely isn't an easy one to follow.... I have pretty much given up on going to eat here in my neck of the woods. A lot of the restaurants do not even know what gluten is.
Posted 6/19/2009 7:08 PM (GMT 0)
Well I have been on gluten free for 4 days now. It is very hard changing my eating habits so suddenly. I did buy some chex cereals and some gluten-free granola bars which aren't too bad. I bought some waffles and am eating eggs for breakfast.

Lunch is the hardest because I always ate sandwiches. I am thin and it helps keep my weight on so that is the meal that has been the challenge for me. I will check out the cake and brownie mixes. I use to bake all the time but just couldn't bring myself to buy the expensive flour.

I am not sure about the cause of my chronic fatigue because it basically happened overnight. I became sick with a flu and have not been the same. Last year I was 80 percent better for almost the entire year and then slowly relapsed. I am willing to try this though since my doctor has been excellent in trying to get me well.

I did have an endoscopy in 2006 and 2007 and the report said everything looked fine and a biopsy was done and it was normal. Anyway, I will give this a try and see what happens!

Posted 6/20/2009 5:34 AM (GMT 0)
Most likely, all of this is from Lyme. Lyme is known to trigger gluten sensitivity that usually gets better with treatment of the Lyme.
Take care,
Posted 6/20/2009 12:03 PM (GMT 0)
I have been in treatment for Lyme for over two years now. I have decided to see my gastro and have a biopsy done.

I have just read too many conflicting reports on whether the blood or stool test is reliable. I mean I am going to change my entire eating habits forever and want to make sure I need to. My blood test was completely normal and I mean way normal and it was the stool test that showed the problem.

I am calling Monday and try to get in as soon as possible. Will let you know what happens.

Posted 6/22/2009 12:17 PM (GMT 0)
You'll need to be eating gluten between now and when they take the biopsy, otherwise the biopsy will be negative.
Good luck,
Posted 6/22/2009 2:03 PM (GMT 0)
Thanks Razzle..I just spoke with the office and I have an appt. on Friday to make an appt. for the endoscopy. I did read that I had to eat gluten before the test so I am back eating wheat etc.

They told me I could have it done within the next two weeks so that is good.

 

Posted 6/22/2009 5:10 PM (GMT 0)
Enjoy those lunch time sandwiches!!! I hope the endoscopy answers your questions. Be sure to let us know about it!!
Posted 6/22/2009 6:35 PM (GMT 0)
Thanks..I will let you know what happens with the test. Hopefully it will be conclusive and if not then I will do the gluten free for a while and see how it goes.
Posted 6/27/2009 11:15 AM (GMT 0)
Went to my gastro doc yesterday. They really didn't want to do the endoscopy since my blood results were negative. They also told me the stool test was totally unreliable.

I asked to have the endoscopy done anyway just so I could be certain and he said that he would do it with the biopsies so that is scheduled for July 16.

I don't like to have unecessary tests done but I really want to be certain what the answer is. Will let you know what the outcome turns out to be.

Posted 6/29/2009 12:25 AM (GMT 0)
I get so frustrated when I hear healthcare professionals say they don't want to do a test if the (shown to not always be reliable) blood test is negative. My blood test is negative. Has been on the few times it was tested. I definitely have Celiac.

My sister's physician wouldn't test her because she's overweight. According to him, overweight people do not get Celiac.... putz.

K, I hope you get a definitive answer, although you may just find the diet makes you feel better. My joints ached so badly I could barely walk when I was finally diagnosed and within 2 months, the joint pain was totally gone.
Posted 6/29/2009 11:27 AM (GMT 0)
I was a little frustrated as well. I have been fighting Lyme for 3 years now and have learned through all the doctor visits that I have to speak up and not just let the doctors have their say.

I know for a fact they would not be doing the biopsy if I hadn't insisted. I am not sure why doctors do the stool test if it is not a good indication of celiac or gluten intolerance. If they were both negative I wouldn't have gone any further but with two conflicting results I needed to.

Will let you know how it goes...in the mean time I am suppose to keep eating wheat etc so the test will be valid (hopefully).

Posted 7/11/2009 7:56 PM (GMT 0)
What test are they doing to find out if you have Celiac? I am having a scope and why they are in their they will biopsy me for it...
Posted 7/13/2009 5:25 PM (GMT 0)
I am having an endoscopy and they are going to take biopsy of the duodenum (sp) and one other place..can't remember. They said they were going to take 3-4 tissue samples and also take a good look. Mine is Thursday but won't know anything till I see the doc 2 weeks later.
Posted 7/13/2009 5:42 PM (GMT 0)
ktp812, cool, good luck to you. Mine is the 23....I am a happy person this morning I had my first BM in months naturally....yipee...I was begining to think that the muscles down their had quit working.

Sounds funny but it felt so good. Kind of sad today because I know my daughter will be leaving in the early morn to go home to Calif.....hope your day is full of good health..

Leslie
Posted 2/26/2011 10:38 PM (GMT 0)
NOGLUTEN:  When you are diagosed with Celiac you think a few months will do it. Well after 6 months I was wondering why I was still having a few bad days a month. I now know it depends on the person but it took 14 months before I am 99 %. 100% Gluten free did the trick. Gluten can sneek into your diet without you knowing. Such as salad dressing, lipstick, lotions, soy sauce, most sauces. spices. McCormicks are the only spices that are Gluten Free. When you first start this journey you become a label reader because there are other things that mean Gluten. I'm in Canada so I don't know what the rules are like in other counties. I just found Udi's bread. It is wonderful. I am so happy to eat a sandwich. Some of the Gluten free breads are so bad. Udi's also have a bagel to die for. There pizza shells are great as well. Good luck
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