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

Celiac Tests Negative.

heathenly

Recommended Posts

heathenly Apprentice
heathenly
Posted

Guess I'll just keep on not eating gluten and feeling better!

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Guess I'll just keep on not eating gluten and feeling better!

Great plan :)

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

My blood test was negative too, but I'll be gluten free for life anyway. I think that's pretty common. I can't touch the stuff.

KMMO320 Contributor
KMMO320
Posted

Mine was negative too and I was told I am gluten intolerant but without a firm diagnosis, I have been just eating whatever and getting sick, telling myself its something else and not gluten...i know I am fooling myself. I feel sick and I really don't know why I'm doing it. I wish I could just be motivated enough and just do what I need to do already :(

heathenly Apprentice
heathenly
Posted
  • Author

I have to keep in mind how miserable I was eating gluten. It was so not worth it. I also don't want to test the theory that gluten intolerance is "pre-Celiac"-- don't want to have full-blown Celiac down the road.

KMM, I think it really helped me to get rid of everything with gluten in my house. No temptation to eat anything with gluten. Also, it helped me to tell all my friends and family-- they're very vigilant on my behalf. If they see me eating something that looks like it has gluten, they jump in. I'm never eating gluten, but I'm glad that they're aware. If I ever did intentionally eat gluten, I'd have some 'splaining to do.

KMMO320 Contributor
KMMO320
Posted

Good advice! I had gone gluten-free for 3 weeks after I had all my testing but before I got my actual results. I never felt better in my life! But when the dr said Nope, not celiac and she basically didnt believe in Intolerance...I started just eating whatever. I went to a new Dr and they said it was likely intolerance..but it wasnt enough to make me stick with it. I had a bad day yesterday. I felt awful. So today I was very good and so far I feel really good.

heathenly Apprentice
heathenly
Posted
  • Author

My doctor at least believes in gluten sensitivity, so he told me not to eat gluten if I do better off of it. Truthfully, even if he thought sensitivity/intolerance was bunk, I wouldn't care. I wouldn't eat gluten again if someone paid me.

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

Celiac.com Sponsor (A8-M):


Stephanie Young Newbie
Stephanie Young
Posted

Mine was negative too and I was told I am gluten intolerant but without a firm diagnosis, I have been just eating whatever and getting sick, telling myself its something else and not gluten...i know I am fooling myself. I feel sick and I really don't know why I'm doing it. I wish I could just be motivated enough and just do what I need to do already :(

That's what i'm kind of going through too.. My symptoms have been getting progressively worse since I first started noticing them, and my tests are tomorrow! When I first went to the doctors with this, about 6 years ago now.. they tested for diabetes, thyroid and probably other stuff but the only thing odd was my low vitamin D levels. I just ended up becomming a very picky eater after that, and my weight dropped pretty fast because I just couldn't eat a lot of foods. I was 18/19 and not really interested in going back to the doctors. So I started my own trials and noticed that even after one gluten free meal, i felt SO different.

For the last year now, i've been eating a lot better, but i still go for gluten almost everyday and deal with it, but i'm far more worried now about intentisinal damage and, positive diagnosis or not - i'll probably be gluten free for good!

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Wow. It's surprising to hear that some Docs are saying Gluten Intolerance isn't a big deal or doesn't exist. My blood test was negative too and I still have intestinal damage from gluten to the point that I've developed so many other food sensitivities from it that there are very few things left I can eat. Don't let that happen to you. Look up info on leaky gut. You could eventually be very sick and wishing you'd stopped eating gluten sooner. It can take one to two years to recover once the damage is done. Do some research before you over do it and end up where lots of us are now. It's not all about "Celiac" or not. Gluten is what does the damage... be careful :)

GFinDC Veteran
GFinDC
Posted

We had a rather lively discussion about cheating not long ago, and whether or not it really is something we need to worry about. See the cheating thread for others input. Another thing to think about is reading the signature lines of other members and seeing what issues they developed, many after years of misdiagnosis.

Well, don't get me wrong, not trying to beat anybody up about their diet choices. I know it takes some time to wrap your head around these diet changes, or at least it did for me. It really is a process going gluten-free, and over time your body gets better and your mind adjusts too. I think of it as changing a habit. Food is probably one of the strongest habits people have, They learn to eat certain foods from a young age and are trained to think they are safe.. And then whammo, suddenly it's not true anymore because of celiac disease. But habits can be changed, and new habits learned. You all can do this! It may be be tough at first but it is for many people. And you don't have to be perfect right away, if you make a mistake you are just a human being like the rest of us who made mistakes. So just start right back in. One day becomes 2 days becomes 3 becomes a week. And then it is several weeks and a month and then more months and you are really a gluten-free person! So easy once it is over. It's not a bad deal once you get used to eating different. I gotta put a smiley here. Big one too. :D

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.