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

Is Anyone Else Just Angry That Drs Missed Celiac For So Many Years?


HaileyRay812

Recommended Posts

Takala Enthusiast

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

_______________

And this is a prisoner of his culture, that does not understand that people who can exert control over their immediate environment, (such as growing,gathering,preparing their own food that makes them feel well) are going to seek out success if they have the support of others that see the benefit of that success. And he doesn't appear to have a nurturing instinct towards younger children.

I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired. :blink:


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

Icarter: "Since starting the gluten-free diet there has been remarkable reversal of symptoms. Of course, since no one caught it earlier, there probably will always be some residual problems...like significant osteoporosis."

I too have had celiac all my life before I discovered what was going on. This was a good 50 years or more...if you count the first 4 years I was off gluten as an infant and young child. I was so bad that my fingernails were flaky and my teeth never hardened until recently. Now I no longer get carries! Think of that. Gums are much improved too.

How I have done it is by taking nattokinase and l-glutamine as well as enterically coated probiotics on an empty stomach. This goes a long ways towards healing the villi and thus their absorption of minerals and vitamins. I also take E-zorb--its 90% absorpable calcium that the Chinese invented. Check it out on the Internet. It has made a huge difference for me. I also take liquid sea minerals, zinc, mag. citrate, and silicon drops (this last for my otherwise perilous joints--it builds both bone and cartiledge). Occasionally I also take plain cod liver oil to get the extra D I need plus Omega 3's.

Doing all this my osteoporosis has effectively gone away--though it seems I have to keep taking these supplements to keep it that way. Now I can lift small weights and do modified push ups and sit ups without harming myself. Try it and see what you think!

Of course no doctor suggested this to me. I had to figure it out on my own. Again thank god for the Internet!!

Am also now trying an experimental laser allergy relief treatment. Its too early to tell if it will help or not. If not, I'll get my money back, so how can I lose?? Am keeping my fingers crossed it will help me overcome some of my multiple food sensitivities.

Bea

YoloGx Rookie

_______________

I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired.

LOL! now that's some dark humor! LIke my brother says, you only laugh when it hurts...

kellynolan82 Explorer

Yes I am angry too. I never had a biopsy though... :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.