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

Must Be A Celiac Thing!


gfgypsyqueen

Recommended Posts

gfgypsyqueen Enthusiast

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!


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



Celiac.com Sponsor (A8-M):



mamabear Explorer

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!

[/quote

Well......I guess I'm more impressed that he is making a celiac connection past the gut issues! Sorry, but you may have to teach them. Medical education is awful about celiac disease, and if you don't search it out....the knowledge given in training is terribly inadequate. I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

Jestgar Rising Star
I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

:lol: :lol:

You can also tell them that it may be related to Celiac, but that doesn't mean it can ignore it and not treat it.

Jo.R Contributor

I know what you mean. When i first had symptoms I didn't want to go to the Dr. I'm overweight and of course that would be why I have gastro probs. I was lucky, but my mom wasn't. She had some complaints that no one took seriously until she quit smoking, then they found out she had MS, and neurorapathy. My first rule of thumb is to fight for your health. If you don't no one else will. Good luck.

Karen B. Explorer

My struggle has been getting my primary doc to consider my Celiac when diagnosing my symptoms. For instance, I have had a single, boil like eruption occur on my left side twice now, in the very same place, occurring about once every 2 years. She didn't think it could be Celiac related because it wasn't DH. She tested it and said it was "herpetic in nature, like shingles but nothing related to Celiac". Then I found out that a co-worker who is Celiac and her daughter have both had similar eruptions. So, it's not Celiac related but 3 Celiacs have had something similar that no non-Celiacs have exhibited. (at least none I know well enough to ask). Hmmm. And my primary doc is an Internal Medicine Specialist! At least she checks to see if she's prescribing gluten-free drugs now, which is an improvement.

I had to tell my Mom's doc that I would pay for her Celiac test if it came back negative because he insisted she couldn't have Celiac. She was overweight and her only real symptom was muscle cramps. Guess what... Medicare paid for the test and her muscle cramps have gone away since she started a gluten-free diet.

My sister has had 4 neck surgeries and her doc couldn't explain why the bone didn't heal properly. She has a wheat allergy but can't eat enough to register on a Celiac test, but she can get by with the occasional "cheat". Just to humor me, she went on a gluten-free diet during her recovery this last time and the bone healed properly but her doc has never heard of gluten affecting the way bone heals... that's an intestinal issue.

I think we need Celiacologists.

nikki-uk Enthusiast
I think we need Celiacologists.

:lol::lol: Yes!!!!

BTW - My coeliac son gets boils - flare ups seem to co-incide with being glutened.

loco-ladi Contributor

Ok, this prolly is no way related, but on the off chance...

About 6 years ago I had surgery, and one certain spot on the incission (sp) never healed right, it would go away, then reappear, go away, reappear, dr after dr told me "its s stitch working its way out...

Wonder if now that I am gluten-free it will disappear or not, never have seen that elusive "stitch"

some things just make you go HHhhmmmmmmmm


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,020
    • Most Online (within 30 mins)
      7,748

    Healthyone
    Newest Member
    Healthyone
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.