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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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So, I've had ibs symptoms for about eight years now, referring to loose stools. Over the last two yeras I've experienced a little weight loss (8 pounds), and been through a variety of blood tests. My family doctor told me he didn't see anything in my blood tests that looked suspicious, and he even tested my blood for celiac disease, which came back negative.

He referred me over to a gastroenterologist and that doctor set me up with a few different tests. He sent me home with a stool test to see if I had abnormal fecal fat in it. He also tested my blood. The results came back and he said that I did have more fat in my stools than I was supposed to have, and that it was quite significant. I think he said something like I was only absorbing 70% of my daily fats. Obviously, not good.

But, here's where I need the help. The way he told me was like he was saying it was REALLY bad. He said, "most of my patients who have this much fat in their stool have been smoking for twenty years, and they're in their 40's and 50's." This bothered me a lot. I asked him if he thought it might be celiac and he said since my family doctor tested my blood for it already, he didn't think it was that, but he didn't seem to remove it from the equation.

He didn't say anything about crohns, UC, or anything else, and really didn't say it was anything. But he did make it known to me that it was a serious thing. Now, I'm 33 and I would say I'm fairly healthy, aside from this. I don't drink, never have, don't smoke, and I don't overeat, nor do I undereat. My symptoms have been the same over the last eight years, except over the last two I've had issues with losing weight, and now a little joint problems. I have a good appetite, no pain, and I sleep well. I honestly thought it was ibs for a long time, so I didn't pay it no mind.

So, since I have fatty stools, and these symptoms, does this sound like any of the things you go through? I'm being set up for a MRI, and some other type of visual test to see my lower abdomen soon. Then, at the end of November I'll be getting a edoscopy and colonoscopy. Can you guys offer me any moral support? I feel like I'm alone with this, and my doctor just kinda left me guessing, and not in a good way. Thanks.

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Well, it could be by chance. Have you noticed any tummy troubles after you eat (feeling bloated, upset stomach, etc)? Granted there are some celiacs that have no symptoms (silent) and those who are to the extreme.

IBS is a catchall term that they use when they have no idea whats going on.

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Why didn't the GI run a full celiac panel again? Find out what blood tests you had originally - there is a very good chance you didn't get all the testing done and your original doctor is wrong.

Also, you can have negative blood tests and still have celiac disease. An endoscopy may show damage. It may not.

After you are done with testing try the diet - regardless of the test results - and see if you don't improve. Give it a good try, 100% for three months.

Also do lots of research so you can ask good questions. Make sure your doctor knows how to do a proper endoscopy and takes enough samples (many do not.)

Do not change your diet until after all testing is done.

Cara

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It definitely could still be celiac. I'd ask for testing (biopsies) or find another opinion. He sounds reluctant to get to the root cause.

It's gross, but it's important so I'll throw it out there. Since at least 2006 I have had occasional oily stools. I didn't understand why but I just attributed it to my lactose intolerance (since birth) and figured that it interacted with fat absorption. It was not frequent enough to concern me and there was no blood or other issues at the time. But, fast forward to the last year and nearly every fatty meal (steakhouse, fast food) left me with the same problem, usually also with D. It got heavier and as it got worse, so too did my other symptoms that I never thought were related.

Once I went gluten-free 6 weeks ago I never had another issue with it until I got glutened, and that was one of the first signs I noticed along with the D.

Oily/fatty stool, if like me, is just one symptom of a bigger problem. You may not have celiac, but it's a sign of something causing incorrect digestion and lack of absorption. There are conditions, such as gallstones, that could also cause the fatty stool, but if they've ruled those others out as possibilities I'd look to trying gluten-free. If it stops while gluten-free, there's your answer.

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I know this sounds odd, but I don't notice so much of the oily residue floating in the toilet bowl as much when I'm eating fatty foods as I do if I eat a bowl of oatmeal the morning of. In other words, I feel like I see more oily residue when I have oats.

Anyway, I'm just worried. My doctor left me completely in the dark, and I'm just at a loss. My weight loss is my biggest concern, and I take it that's because of my malabsorbtion. But, my doctor put me on Creon, and told me to take like 2 pills every meal I eat. I don't really know if it's helping honestly, but it's only been a short time. I guess if I did have Celiac it would be the "silent" version, since I don't have abdominal pain.

Also, one of my other issues lately is lactose intolerance. I've never had such an issue with it up until recently. I can have a little, but if I over do it or over eat, I have to take gas-x, otherwise I feel like I'm going to explode.

Thanks again.

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    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
    • Silent Celiac or Non-digestive symptoms
      My celiac diagnosis started with me seeking medical attention for an ongoing migraine problem. This lead to MRI's that showed white spots on my brain which lead to blood work that showed a positive ANA (1:640) and a trip to the rheumatologist. The rheumatologist suggested the biopsy and a referral to a GI specialist after he felt confident that I didn't have lupus. The funny thing is that I don't have severe tummy troubles. I have some bloating occasionally and gas along with differing bowel patterns but that's about it. The most annoying and troublesome symptoms for me are migraines, fatigue and sometimes I get a little achy. My results for the prometheus test were high, blood anti-bodies were present and my biopsy revealed Grade B2 villi damage (the worst classification according to Corazza, Roberts, Ensari). Anyway I guess what I am wondering is how long after being "glutened" will I have a migraine, vitamin deficiency or other neurological symptom so that I will know that I am in trouble? I feel like if I had the tummy trouble to go with this I would know when I have eaten something that has been cross-contaminated. I just want to heal soon and not risk further intestinal damage or lymphoma. Thanks for your reply!
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