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

Totally Confused


Twister2

Recommended Posts

Twister2 Contributor

Hi all. I am now officially confused about my condition. I tested positive for Gliadin Antibodies in October and I just recently had the Endoscopy which turned out to be negative. My GI told me that there was no evidence of Celiac disease on the Endo. I am now totally confused because I am sick as a dog EVERY time I eat anything with gluten in it. My mother and two of my sisters are antibody and Endoscopy positive for Celiacs. All of them are terribly ill. I have the same symptoms, such as severe bloating, muscle and stomach pain, skin itching, mouth sores, severe fatigue, numbness and tingling in my hands and feet and sometimes I have coordination problems in my hands also. I am just wondering if I actually have Celiacs now after the negative biopsy. Anyone have any thoughts????


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



Celiac.com Sponsor (A8-M):



Tasha2004 Contributor

I'm on this track now, except only one Gliadin test is elevated and I dont feel anything different if I eat gluten.

In your case, I would just do it.

If you need a firm confirmation you can go to a private lab and have the stool tests.

They told me one elevated gliadin blood test indicates Celiac may develop, but not necessarily.

However, if you are already sick from the gluten what do you have to lose?

I think the private lab tests are a better bet, but they are too pricey for myself at this time.

Guest jhmom

A negative biopsy means NOTHING! If you have positive blood work you should be gluten-free! Some people can have positive blood test and negative biopsies and vice versa. If you need a dx then a stool panel test from www.enterolab.com is what I would do, it is accurate and more sensitve than blood.

If you do not need a dx from a doctor then try the gluten free diet for a couple of months and if your health improves, you need no further testing!

I hope you begin to feel better soon! :D

lovegrov Collaborator

Go gluten-free and see what happens.

richard

  • 3 weeks later...
Kate107 Newbie

I've had two negative blood tests - the first one was following a mostly gluten-free diet, so I had to have a second one after a six week gluten loaded diet. After the second test, I cleared out the gluten regardless of the test, because I was just so sick of feeling lousy. After a few days, I figured "Oh, what the heck - this must be all in my head," and I snacked heavily on cereal one evening. Now two days later, I'm queasy, gassy, I was first constipated and then had explosive, gassy diarrhea. According to the doctor's office, there was no change in my blood test results. What's going on??? I want to see the test results for myself - if the numbers are any higher, even if they're still within the normal range, does that mean anything? And why, during the six weeks of gluten challenge, did some of my symptoms settle down?

darlindeb25 Collaborator

you can be gluten intolerant and not have full blown celiacs yet, but if you remain eating the gluten, in time you will be full blown and it takes even longer to feel better--go gluten-free and feel good--forget the test--deb

tom Contributor

Twister ! Go gluten-free !

Kate ! The blood test has a horrible rate of false negatives. But i'd never imagined a celiac could have symptoms "settle down" during a gluten challenge. Tho now that i think of it, I used to (several years ago) be able to have some gluten w/out getting symptomatic tho i would have the common symptoms w/ a greater amount of gluten.

So there WAS, for me, a time where a gluten-challenge could proceed very differently, depending on the amount of gluten involved. How much gluten were u ingesting for the challenge ?


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



Celiac.com Sponsor (A8-M):



Archived

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


  • 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
      @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
      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
      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
      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
      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.