Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

What To Do!


hubicka

Recommended Posts

hubicka Newbie

For many years I've had tummy problems - extreme (and i mean extreme!) bloating, discomfort, terrible flatulence and feeling nauseous a lot, also very constipated. Doctors just told me I had IBS (even though i never have diahrrea) no IBS medicine/remedies help at all. I went to a chiropractor who did a kineseology allergy test and told me I had a wheat allergy. I cut out wheat and after a week or so my bloating had decreased as had the flatulence and discomfort, but I started to really doubt the kineseology test which has no science or logic behind it, and felt the strong lure of my beloved thick white bread and cereal... :D so i went back to my wheat-high diet and the symptoms are back with a vegeance. My stomach is HUGE, terrible terrible gas and discomfort and feeling queasy and constipated. The drs say I can have a blood test to see if I am a celiac but I have to eat wheat for 6 weeks. I feel so utterly terrible that I'm not sure I can continue for 6 weeks, its been a few days and my whole digestive system just feels absolutely terrible!

Is it likely that I am celiac? - or wheat intolerant? Also if i returned to the dr and said I feel so terrible that I can't possible continue eating wheat for 6 weeks would that be enough for a diagnosis?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome!

How long were you gluten-free? Your doctor is correct that the tests lose their accuracy with any time gluten free.

If you are unable to continue to eat gluten because the symptoms are obvious and severe - I'd talk to your doctor - it is possible that you will still be positive for celiac antibodies or if negative perhaps if you test now and then after several months gluten-free the numbers will reduce enough for the docs to diagnose you with that information along with your dietary response. It is unlikely you'll get a diagnosis of Celiac Disease without positive blood work &/or positive endoscopic biopsy, but they may diagnose Non-Celiac Gluten Intolerance. The treatment for both is the same - removing all gluten.

I do highly recommend you remain on gluten for the challenge and obtain all necessary tests - people often regret not getting tested done before going gluten-free.

Good Luck to you :)

hubicka Newbie

Thanks :) will try remain on the gluten free diet. I was only gluten free for about 9 days, previously was on a very high gluten diet and for the last week i have been too. I also have a number of vitamin deficiencies, am very pale and sickly (!) hair/nails breaking/falling out etc, and have autoimmune thyroiditis so i suppose the chances of having it are high.

The thought of an endescopy worries me - i have a severe phobia of being sick and anything that would make me gag would be impossible! Perhaps I could have it under general anaesthetic? :D

GottaSki Mentor

Not to worry - if you choose to have an endoscopy - they can make you nice and sleepy - I have no memory of anything going in or down - I've had three and have severe gag reflex.

hubicka Newbie

Not to worry - if you choose to have an endoscopy - they can make you nice and sleepy - I have no memory of anything going in or down - I've had three and have severe gag reflex.

Ah that's good :) Do you think the 9 gluten free days would be enough to mess up the results - should I just wait a few weeks continuing with gluten and then go to the drs?

GottaSki Mentor

Ah that's good :) Do you think the 9 gluten free days would be enough to mess up the results - should I just wait a few weeks continuing with gluten and then go to the drs?

No one can really answer this. The level of antibodies may be reduced from that amount of time gluten-free. If you happen to be weakly positive, nine days could be enough to put you in "normal" range. I was weakly positive after decades of undiagnosed celiac - it was enough to trigger endo which found severe/total villous atrophy and every sample came back at the highest level on the Marsh Scale for Celiac Disease. Conversely, it is possible that you could have the antibody tests now and be positive - there is no way to know.

If you are having a very tough time ingesting gluten I would opt for an earlier Celiac Gastroenterologist appointment.

hubicka Newbie

No one can really answer this. The level of antibodies may be reduced from that amount of time gluten-free. If you happen to be weakly positive, nine days could be enough to put you in "normal" range. I was weakly positive after decades of undiagnosed celiac - it was enough to trigger endo which found severe/total villous atrophy and every sample came back at the highest level on the Marsh Scale for Celiac Disease. Conversely, it is possible that you could have the antibody tests now and be positive - there is no way to know.

If you are having a very tough time ingesting gluten I would opt for an earlier Celiac Gastroenterologist appointment.

Thanks for your help :) am going to try get a Doctor appointment tomorrow

Even if the blood tests come back positive would I still need an endescopy? I literally could not go through with it :( I would just have to be undiagnosed and cut out wheat regardless, provided my symptoms clear up as a result!


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

The way they do the endoscopy is like a general anesthetic, only safer. They give you medications to make you very sleepy, just like you were under anesthesia, and they give you something else that makes you forget anything that happens, so when you wake up you will be wondering when they are going to do it, only to find out it is already done. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,114
    • Most Online (within 30 mins)
      7,748

    Vegan Brandy
    Newest Member
    Vegan Brandy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      That’s great to know. Thanks Scott
    • trents
      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
×
×
  • Create New...