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

To Test Or Not To Test...


ciavyn

Recommended Posts

ciavyn Contributor

Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?


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



Celiac.com Sponsor (A8-M):



Lynayah Enthusiast
Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?

Yes, it is worth it to see a doctor. Please do.

Others' opinions: All that matters is how you feel about YOU. Do what you think is right. If others understand, fine. If they don't, so be it. Do not worry about them.

Come here, and we'll give you all the support you need. Not everyone understands, but we do.

ksymonds84 Enthusiast

I would get all the testing done that you can possibly afford so that you will not second guess yourself later. The problem for some (not all) who self diagnose sometimes find themselves in a cycle of whether or not they really have a problem with gluten and find it very hard to stick to the diet. I did the self diagnoses thing kind of (my family doctor believed me to be gluten intolerant) but still kept questioning everything and wanted to make sure since this diet is for life! So I did the gluten challenge ect to get an official diagnoses to keep me straight. Now having said that, not everyone is like me and you will find plenty of wonderful self diagnosed people here who went gluten free on there own and have never looked back! Good luck with whatever you decide to do.

ang1e0251 Contributor

I am self dx'd. It was a question of economics for me. I refused to challenge months later when I could have afforded it again. The difference in my health was so dramatic to me and my family, I've never had a doubt. If you can test, go ahead. It seems like you would find a dx comforting when questioned by others.

You will have to go back to eating gluten to be tested.

ciavyn Contributor

Thank you for your thoughts. Since finances don't provide much in the way of extra funds - what with Christmas right around the corner - I may not have too many choices right now. But I'll call the doctor and see what I'd be facing. Since I just recently went off gluten, I think I'd still be okay to be tested. (?) I'm not sure.

The other issue is that this takes time to see what works the best for you, from what I've read, and it's hard to be patient. :) Especially when some of your issues are quite attention attracting...ugh. No doctor's diagnosis can tell you what is best for your lifestyle, or what is healthiest for you, and if nothing else, this is forcing me to eat how I SHOULD eat, even when I don't feel like it. I'm not willing to throw away my investment on a yen for gluten.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • 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.