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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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LivingHealthy42

Hello All From Ohio

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Hello everyone,

 

I am obviously new to the forum and also to the gluten-free diet. I am not medically diagnosed with a gluten sensitivity yet, but choose to eat gluten-free.

 

In January of this year, I became extremely ill with abdominal pain, weight loss, vomiting, and nausea. After going to the family dr and having some blood work done, I was immediately admitted to the hospital the next day. Two days later I was diagnosed with kidney failure. This was completely out of no where and unexpected. I've always been in great health, active, athletic, etc. etc. It was a shock.

 

In July of this year I received a kidney transplant from my wonderful sister.

 

Ever since the transplant I have experienced extreme diarreah accompanied by stomach pain, bloating, and gas. I was running to the restroom 4-6 times a day every time I ate. However, with the high volume of meds I must be on due to the transplant, this is common. The issue is that it has now been three months of being on these meds and my dr's have just told me they see cases like mine only about once  a year.

 

I've been experimenting with gluten-free foods, and this has certainly increased my quality of like. I still have daily episodes, but am better. I'm hoping there may be others that have had similiar situations via a post transplant or other similiar situations?

 

Looking forward to joining the forum.

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Welcome to the Forum.

 

A big CONGRATULATIONS on you're new kidney, and how awesome of you're sister to give hers.  You will find a ton of information here on Gluten Free living, plenty of support and friendly people.  Have a look around and ask anything you want, join our discussions and offer you're opinions. 

 

All the best,

 

Colleen

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Glad you are doing better post-transplant and I think you are courageous and a warrior!

 

But honestly, I suggest asking for a celiac panel...  pronto, before you continue on the gluten-free diet.

 

Continue to eat gluten for this test so it is valid. Make sure celiac is what you are dealing with, so you have proper follow up care.

 

Is kidney disease associated with celiac? yes! But it is not the only reason why is can develop and I would hate to see you go G F if you do not need to.

 

And to get any benefit from the G F diet--if it is a health issue?--well, you need to be 100% G F, not just experimenting. Ok? Okay!

 

Best wishes.... and let us know what happens.!

Good health to you. (and P.S.... your sister is an angel)  :) but you already know this. 

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Glad you are doing better post-transplant and I think you are courageous and a warrior!

 

But honestly, I suggest asking for a celiac panel...  pronto, before you continue on the gluten-free diet.

 

Continue to eat gluten for this test so it is valid. Make sure celiac is what you are dealing with, so you have proper follow up care.

 

Is kidney disease associated with celiac? yes! But it is not the only reason why is can develop and I would hate to see you go G F if you do not need to.

 

And to get any benefit from the G F diet--if it is a health issue?--well, you need to be 100% G F, not just experimenting. Ok? Okay!

 

Best wishes.... and let us know what happens.!

Good health to you. (and P.S.... your sister is an angel)  :) but you already know this. 

I was going 100% gluten-free for about 2-3 weeks and found my symptoms to improve. The bloating and gas pains decreased almost totally, but not all the way. I asked the dr's to order a gluten intolerance test which they did. I was to be on a regular gluten diet for 2 weeks and then go in for blood work and possibly additional test depending on results. I could only go about 2 days of eating regular food before extreme stomach pain and watery diarreah returned. I cancelled the gluten test for now and am returning to a 100% gluten-free diet.

 

I was actually re-hospitilized for 10 days in the middle of august because of my stomach pains and diarreah. The obvious loss of fluids and other nutrition from the diarreah is a severe risk to my new kidney. I was discharged from the hospital with no results and no diagnosis. My drs (Kidney team, surgery team, GI team and infectious disease team) continue to feel it is associated with my daily meds. Until this is determined I've chosen to be on a gluten-free diet. Without this diet, my quaility of life was honestly better before the transplant and being on dialysis 3 times a week. It has been very frustrating.

 

**To add: I've never had any dietary issues or needs prior to my transplant. Even during my dialysis period, I was perfectly fine eating any foods, and all grains, wheats, etc. The drs determined that my kidney disease was congenital and have shown long term scarring since childhood. I am very young for all these health issues, yet to turn 30.

Edited by LivingHealthy42

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I am sure it is frustrating. :(  Sorry hon. My Dad had kidney disease and was on dialysis and had blood transfusions constantly, so I think I understand the frustration and I wish he had been properly DXed with celiac back then as it may have helped him immensely.

 

But as for you--if you tried a gluten challenge and it made things worse, then  you should do what makes you most comfortable. Absolutely!

 

I am sorry the doctors cannot give you more of a definitive answer because diarrhea is sparked by many things. Meds? yes, but also various 

pathogens, AI diseases, colitis, Inflammatory bowel diseases. etc. 

 

If gluten is the culprit, just stay off it and hopefully, in time, the big D (as we call it on here) will subside (fingers crossed)

 

Can you tolerate probiotics? they may help.

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http://www.celiac.org/index.php?option=com_content&id=6&Itemid=12

 

Celiac Disease can appear at any time in a person’s life. In adults, the disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. celiac disease is a multi-system, multi-symptom disorder. Symptoms vary and are not always gastrointestinal (GI). GI symptoms can often mimic other bowel disorders.

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When I was hospitilized in August they ran a ridiculous amount of test, daily blood tests, usually around 4-6 a day, experimented with meds, tested for all pathogens, viruses, infections including CDIFF and CMV, also did a full colonoscopy and took tissue samples. Literally everything came back negative. All the docs were are very confused and only keep coming back to "it must be the meds."

 

The kidney surgery is my first major major surgery, but I did have three other minor surgeries prior to this. They do say that I am certainly inflamed from the constant bowel movements, etc, and could take much longer to fully heal once the cause is determined.

 

Regardless, until a definitive answer is know, the gluten-free diet works for me and is my best option.
 

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Sounds as if they covered all the bases.

 

Maybe it is the meds, then. As you say, the G F diet is helping, so...stay the course.

 

Have you removed casein as well? Maybe that could help with the D.

 

probiotics work wonders for bowel issues, if they do not mess with your meds.  (I do not think they are contra-indicated for meds)

 

Could just be a bad case of gastritis (inflammation of the GI tract)?

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Welcome to the forum! :)

 

It sounds like your negative body reactions to reintroducing gluten were pretty clear.  that's actually a helpful thing itself, because you know it causes problems  Even without a diagnosis, you know that gluten causes some kind of harm to your body or you wouldn't have symptoms.

 

The docs should (if they haven't already) check your vitamin and mineral levels.  Celiac can cause mal-absorption of nutirients which is a potential big problem.

 

Your vitamins and meds need to be gluten-free also.

 

Celiac disease is an autoimmune condition, it takes very little gluten to trigger an autoimmune attack.  The autoimmune response (attack)  doesn't stop in a couple hours.  It goes on for weeks or more with each exposure.  So you never get fully healed if you are taking in even a little gluten every week.  That's why 100% gluten-free has to be the goal.

 

If is possible they could do an endoscopy to check for villi damage.  That is one of the standard tests for celiac disease.  Even when blood antibodie tests are negative, people sometimes have positive biopsies of the intestine.

 

But it may not matter to you.  If you know you have symptoms from eating gluten, then you shouldn't eat it regardless of what tests say.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
 

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