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

Venting


BamBam

Recommended Posts

BamBam Community Regular

I've been reading a lot of the threads in this area the "pre-diagnosis, testing and symptoms." I get so fed up with so many of us going to doctors and they are not listening. I feel the reason for this is - if they diagnosis "gluten intolerance or celiac" there is nothing else they can do for us really. There is no magic pill or test or testing or ongoing doctors thereapy/office visits that will make us better. Only a gluten free life will make us better. So I feel gluten intolerance is going to challenge the medical world, because there is nothing to fix us except a gluten free life. That is why doctors don't want to diagnosis it, I think, because once we are diagnosed, there is nothing else they can do. In the ten or twelve years that I suffered I had three or four colonoscopies, upper GI's, Lower GI's, urine tests, poop tests, blood tests up the whazoo, and then went to a "specialist" to get it all done again costing me and the medical insurance thousands and thousands. And reading some of these threads, some of you have spent tons of money on medical issues and in the end it was celiac disease.

So in the end, I diagnosed myself with the help of some friends. I feel almost 100% better (now that I stopped eating a couple gluten containing items!). When I am 100% gluten free I have little or no cramping, no bloating, very little diarrhea, I still fight constipation a little bit - I do not eat enough fiber yet but that is something I can work on myself. My mood swings have subsided and my depression is minimal to none.

As I get older I may regret not getting an "official" diagnosis, although none of my doctors had a clue anyway. But I refuse to feel horrible for three months to get an "official" diagnosis. I know my body and I know what it does not like, gluten is poison for me.

My husband, who has diabetes, allergies and several other health problems, has gone gluten free with me. Since he has gone gluten free he has not taken any allergy medications except for an occasional nose spray, he has lost 20 pounds, and his diabetes is much more easy to handle, he does not have near the highs and lows as he has had in the past. Is he Celiac? We don't know, but the gluten free diet has helped him immensley in many areas of his health. He is no longer bloated, he very seldom has gas or belches now. His bathroom problems have been fixed.

Today I wrote to several major comanies (General Mills, Post, Kellogs) and stated that the gluten free diet/life is going to become a major thing soon, there are thousands of us already that live this life style, whether we are diagnosed or not, and they need to start producing more "gluten free" items.

I'm done. my fingers hurt from typing! ;) Thank you for listening and reading. I just hope and pray that the medical world will take this more seriously than they have in the past.

bambam


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

I hear you. My life was dominated by dr appts for the first three years of my son's life. Now, the drs we see don't even want to discuss his celiac. It's a complete Non-issue. They can offer me nothing now that he's dx and gluten free.

ianm Apprentice

Amen to that. If the gluten-free diet has improved your health then that is all you really need to know.

Guest nini

I 100% agree with everything you've said...

I feel like we as a society have been conditioned to regard Dr.s as the ultimate authority on our well being and so many of us will go to the Dr. expecting them to "fix" us and when they prescribe more drugs for our symptoms we actually THANK them???!!! Sure they have their usefulness but keep in mind that Western Medicine, as we know it, has only been around a few hundred years (if that). For millennia humans have been treating ailments through natural methods that are tried and true, Dietary being number one. The Chinese for centuries have known how to treat all kinds of ailments by simply changing the diet.

Anyway, we need to trust our innate intelligence more. We need to listen to our bodies. If your body is telling you a certain food doesn't agree with you WHY do you have to go to a Dr. to get confirmation of this??? I know that some people do not know how to listen to their bodies yet, but the medical community needs to behave more responsibly and when indicated encourage people to try dietary changes first instead of going through costly and invasive tests. IMHO Celiac is only one condition associated with an intolerance to gluten and it's not going to change anything by confirming with a biopsy that there is already damage. The only treatment for Celiac and for gluten intolerance for that matter, is a lifelong avoidance of gluten.

FaithInScienceToo Contributor

You go Bernadette!

Gina

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,019
    • Most Online (within 30 mins)
      7,748

    Wilson1984
    Newest Member
    Wilson1984
    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

    • 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. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.