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

Being Tested

confusedandworried

Recommended Posts

confusedandworried Newbie
confusedandworried
Posted

Hi,

I have been off wheat for a long time when my doctor repeatedly said i had IBS due to stress, knowing they were wrong I took matters into my own hands and removed what was irritating me the most- wheat and dairy. I was still having problems and when we moved my new doctor eventually agreed to test me for coeliac. it came back negative but the dietician is sure that I am coeliac, she said she believed it was negative as after looking at my monthly food diary, my gluten in take was low.

She said to eat it for 6 weeks and get re tested. however knowing how ill it makes me feel i decided to actually cut out gluten. Apart from when i make mistakes, i feel so much better than I have in ages.

Now I am a bit worried about what will happen if i am never officially tested.

I just want to ask if it was safe not to be tested and officially know if you are coeliac. I am new to all this and not sure what follow up I would receive if I tested positive.

i know regardless of any test results I would not go back to eating gluten as I feel so much better. I am just concerned that I might be risking my health if I am not officially diagnosed.

sorry for the long post, but I feel like the doctors have just pushed me aside for a while and the dietician has no appointments for two months!

thanks

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

When we are diagnosed most doctors will run vitamin and mineral panels and do a bone scan to check for osteoporosis. But some doctors will run those without an 'official' diagnosis. In some countries you can get a 'script' to lower the cost of gluten free food. Unfortunately 6 weeks may not be long enough to show a positive on blood tests or biopsies, the general rule is 2 to 3 months back on gluten. Even if never gluten free some folks will have a false negative on testing. It is also advised that all first degree relatives of someone diagnosed get tested, brothers and sisters and parents, children etc. This applies even if they don't seem to have any symptoms but some folks refuse to be tested despite this for various reasons.

You need to do what you feel is best for you. In some cases doctors will diagnose based on the reactions to adding gluten back in but you would need to talk to your doctor about that to see if it is possible.

Stellar003 Newbie
Stellar003
Posted

I just had an endoscopy yesterday because i know myself, it would drive me crazy not knowing what is going on with my intestines. I decided all the confirmation i can get will help me in dealing with it all psychologically. Plus, i wanted to make sure there were no other problems present...related or unrelated.I am only two weeks into gluten free diet, so I felt an urgency to get it all done quickly. If you are unwilling to do the gluten challenge, which I totally understand because I wouldn't either, Its my unprofessional opinion that you are fine without an official diagnosis (if your symptoms are gone) Trust yourself and stick to what makes you feel good. However,if it would make you feel better to be tested in the long run....maybe you should. Having Celiacs and not officially being diagnosed is fine so long as you are gluten free, the bigger issue is what if it is some other disease. I think having a healthcare provider that you trust mAkes all the difference in the world. If you aren't sure that you are getting sound advice, keep on searching for a doc you trust. Good luck!

MsCurious Enthusiast
MsCurious
Posted

Hi,

Now I am a bit worried about what will happen if i am never officially tested.

I just want to ask if it was safe not to be tested and officially know if you are coeliac. I am new to all this and not sure what follow up I would receive if I tested positive.

i know regardless of any test results I would not go back to eating gluten as I feel so much better. I am just concerned that I might be risking my health if I am not officially diagnosed.

Hi confusedandworried, I'm a little bit "in your boat" and its been FRUSTRATING and at the same time a little frightening to navigate this maze of medical brick walls, and in my case "idiocy"...to find a doctor that even remotely knows that celiac and NCGS (non-celiac gluten sensitivity) DO affect people other than children with bloated stomaches and diarrhea.

That being said, I came upon celiac disease while looking up IBS (which I am 200% positive I don't have) and kept finding links to celiac. I got curious and started reading, called my doctor, gave him my symptoms and said I think I should be tested for Celiac. He thought I was crazy, but ordered ONE blood test ...which came back negative. I wasn't okay with that, especially after reading about and talking with all the great people here, who have been willing to share their stories. So I thought about it logically, and knew that if he wasn't willing to consider other testing I would push for one that would ease my mind and send me looking for other reasons for my health issues.

The test that would ease my mind, I decided, would be HLA genetic testing. When I talked to my doctor, I simply said, "You know if we do the gene test and it comes back negative, I can take myself out of the "possible celiac pool" and try to find another cause, BUT if it comes back positive... I want further testing. He agreed and we did the test (he ordered the lab work). After a MONTH of no results, and my doctor sending me off to "G I Joe" ... I had to ask that ("SOB" 'scuse my language but that's what this guy was) to show me my HLA test results on the screen in his office. It was POSITIVE! My doctor, being so unfamiliar with celiac, I guess ...didn't even want to tell me my genetic results. I had a VERY bad experience with this "G I Jerk" and ended up in tears in his office. He didn't listen to a word I said, and told me that I had IBS, because only skinny people have celiac disease! OMG! I'm not THAT overweight... but he went on to say its mostly kids that have it... (that's a myth) and only skinny people have it (also a myth).

Now that I had a positive HLA DQ2.5 gene, I knew the possibility was there...and I knew I wasn't crazy. I had also performed "mini tests" of gluten free for 3 to 5 days here and there, and felt a HUGE difference for the better. SO, I thought I'd just go gluten free myself and "screw the idiots"! Then I talked to my parents, and they talked to some of my aunts and uncles, who were waiting to hear the results. Now I felt an obligation to give them a solid answer, because others in the family apparently have been suffering with symptoms, but didn't know what it was.

Then I started reading, and one of the books I read, "Revised and Updated Celiac Disease A Hidden Epidemic", by Peter H.R.Green, MD and Rory Jones.... and that scared me! It scared me because my dad is in poor health and I saw LOTS of his sympoms...and I could help him greatly by finding out definitively if I have celiac disease. It was scary because I read about the possible complications of not being correctly diagnosed. So I have decided to do what he suggests in the book. Call a local Celiac association and get a referral... a name of a doctor that KNOWS celiac disease, and that can figure this out for me. Once I do that I will know with absolute assurance that I either have celiac disease or NCGS (non-celiac gluten sensitivity). As soon as I have a biopsy I will be gluten free either way. I would encourage you to READ, LEARN and make an educated decision about your testing path, before you go gluten free. As I see it, I have this one window of opportunity to get tested, after that....there's no turning back. Most people refuse to do a gluten challenge once they feel better gluten-free, and I think that would happen to me, so I have decided to find out first, because of the medical implications of having celiac disease and not being properly diagnosed.

Hope this helps you! :) Good luck and feel better! (sorry so long winded... it just happens.. lol :P)

confusedandworried Newbie
confusedandworried
Posted
  • Author

Thank you so much for the replies. It is such a nice feeling to know that there are other people out there that understand just how rubbish it can make you feel.

I am going to have another try with the doctor and see what they say.

thanks very much again

Archived

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

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


  • Member Statistics

    • Total Members
      128,174
    • Most Online (within 30 mins)
      7,748
    stache
    Newest Member
    stache
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 
×
×
  • Create New...