• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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

I Can't Get A Diagnoses Other Than Ibs....so Frustrating

Rate this topic

Recommended Posts

hi everyone. I'm 24 years old and have had stomach problems since I was a baby. I have had countless blood work, 3 colonoscopys, 2 endoscopys,barium x ray, stomach ultrasound, and allergy testing. I had the skin prick test which didn't show anything. my celiac blood panel came back negative, stomach ultrasound showed gallstones, so I had my gallbladder taken out last year, but still having problems. I got the report from my gi doctor and it said that a single biopsy was taken on my endoscopy. would one biopsy be enough to show celiac? also my blood work showed that I have a iron deficiency. my other symptoms are diarrhea every morning befor I even eat, then more diarrhea after my meals,excessive belching, and tooting, I have had bloody stools, I haven't had a period since October 2011. I just got diagnosed with pcos. my dr. gave me the diagnoses of IBS. I also have really bad eczema all over my skin. and creams don't seem to help. I don't know what to do anymore. I've missed a lot of work, because of cramping and diahrrhes, and vomiting. I'm scared to eat out, just I case I can't make it to the bathroom in time. do you think I fit the case for celiac. also how accurate are celiac blood tests. thanks so much for listening.... lizzy :)

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

No one biopsy is not enough to have taken to rule out celiac and both blood tests and biopsies have a high false negative rate. I could have written your post a few years ago and it is so frustrating to be so sick and get the IBS diagnosis which isn't even really a diagnosis but a symptom.

I would suggest that you get on the diet very strictly, eating whole unprocessed foods and no dairy or soy to start. Your body will give you the answer. I can't say for sure but you do sound like you have found the right place. Read as much as you can here and ask any other questions you need to ask.

  • Upvote 1

Share this post

Link to post
Share on other sites

I wouldn't trust a negative blood test. I had my first blood test done while when I had an ERCP after several days of not eating at all. A single biopsy came back positive but that blood test and one done about a week or two later were both negative. The biopsy report was pretty conclusive, stating that the damage is consistent with celiac. On top of my insurance not covering getting another biopsy done, I really wouldn't have wanted it anyway. I'm not a fan of unnecessary procedures, especially when anesthesia leaves me eating laxatives like they're candy. Barium x-rays are the worst! Reading around a lot of posts here you'll find that the symptoms can vary widely from person to person but I don't think any of us would be shocked if you said you got a celiac diagnosis.

As for eczema, I can't offer much advice as I still spend 100% of my time itchy but I'll share what helps me. Sometimes I'm simply uncomfortable, sometimes I feel like I could crawl out of my skin. It helps some for me to use Eucerin calmin body wash. I also go through a lot of lotions and creams. They don't fix the itchiness but they help some. It makes the difference between tolerable and scratching myself until I bleed while simultaneously being unable to stand the feel of anything, even myself or the air touching my skin. I'd sooner not wash my hands after using the restroom than to wash them if I left the house without lotion. (Yeah, gross vs. being driven criminally insane. Both options suck.) I was told by customer service that Neutrogena hand cream is gluten free so should be fine to use. (I get the fragrance free one, but love the smell of the smelly one.)

Last tip, buy a back scratcher. I picked up a cheap wooden one at a Walgreens for like 3 or 4 bucks. Now that I have it I couldn't imagine life without one. Once you have one you'll wonder how you ever lived without one. It truly is a life changing experience when eczema has you on the brink of itch induced insanity.

Don't give up hope! Someone will wander around after me and tell you how they were diagnosed with IBS (which is not-so-affectionately called I be stumped around here) and it turns out it was celiac all along. Worst case scenario, if you have an uncooperative doctor you can always go gluten free and see if that helps any.

  • Upvote 1

Share this post

Link to post
Share on other sites

I am first timer here too so i cant really give any answers.

Just letting you know that you are not alone in having issues. I have PCOS as well, I got disagnosed one year ago but not anything other.

I am do researching to see if PCOs does really be caused by the gluten diet plus other food intolerance? Just let you know that I am still learning more about this disease and intolerances everyday. However, welcome here! B)

Share this post

Link to post
Share on other sites

Welcome to the club, I think almost everyone here has been diagnosed with IBS at some point.. my blood work was positive / neg biopsy - both doctors swear it can not be celiac...but I'd trust your gut, keep a food diary and start out slow - eat normal foods but take out one thing at a time (Gluten, Casein, Lactose, Rice, etc.) It might take a while to rule out or find some of the foods that are causing the most pain but it does give you some answers! I hope you find your triggers and get some relief. There are ALOT of books out there written for people like us also, it makes it easier to understand what good methods of shopping and prepairing foods.

Share this post

Link to post
Share on other sites
Ads by Google:

You poor thing. Yes the blood tests are inaccurate and one biopsy is not enough because damage can be patchy. You could also just be very gluten intolerant which wouldn't show up on tests. Just go gluten-free and see if it helps any. :) As ravenwoodglass suggested, go simple. Soy and dairy are hard to digest and if you're belching and tooting a lot starchy foods and beans can make it worse. Lots of stewed meat and veggies, a little fresh fruit, and take a good probiotic, one with 10 billion+ colonies a day.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Chris Smiles
  • Popular Now

  • Topics

  • Posts

    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.

      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
  • Upcoming Events