Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

lizzybeth

Recommended Posts

lizzybeth Newbie
lizzybeth
Posted

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 :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Adalaide Mentor
Adalaide
Posted

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.

LuckyAtlas84 Apprentice
LuckyAtlas84
Posted

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)

Jsny1010 Rookie
Jsny1010
Posted

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.

Skylark Collaborator
Skylark
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.