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Being Tested

confusedandworried

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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

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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

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    • Rogol72
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