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

Gluten Intolerant ?


PsyDbound

Recommended Posts

PsyDbound Newbie

Hello All!

This is so strange so I will start from the beginning. About three years ago I met a neighbor who had been going through doctor woes with her then one year old. Eventually she found out he had celiac disease. She then put herself on a gluten-free diet, felt better, and has been gluten-free ever since. I love to do research, so when she told me she and her son had celiac disease I instantly hit the medical college and began reading. I am in school so I took the chance to write a research paper on a topic relevant to my field. I mapped the physiological link between celiac disease and schizophrenia.

So at this point I knew the symptoms and had a relatively good idea as to how prevalent this disease is. I started diagnosing people everywhere, it


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Ok that doctor you had should be out the door. These kinds of doctors are what contributes to the suffering that people go through that can easily be avoided. If you have the antibodies then you need to go gluten free now...not wait. The longer it goes on the more problems begin to arise and you damage your body. You also increase your chances up to 100 times of getting cancer and other life threatening or disabling diseases.

Your sister sounds like she has things that can come with celiac, it runs in the family, and she should definitely be tested. Give her the specific tests she needs to be tested for.

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

As for your kids...I would get them tested asap.

frenchiemama Collaborator

NO! That does not sound right! I'm 28 years old and it sure as heck is affecting me now. I can think back to when I was about 17 that I started having the first symptoms. If you just put it off until you are in your 40's you will most likely be in a world of hurt by then. Going gluten-free now will mean better health for the rest of your life.

I don't know why he would tell you that, except that he doesn't know what he is talking about.

I was diagnosed through bloodtests only. I could have gone to a GI for further testing, but I didn't really see the point. It's not like the course of treatment will change if you know what your intestines look like. But that's just me, and I know that some people do feel like a biopsy is important.

I would certainly have your kids tested, just make sure that the doctor you take them to is more knowledgable that yours.

tarnalberry Community Regular

Kaiti's got the list of tests there (IgA is so totally insufficient by itself!), and yeah, you're doc's a bit off by saying "oh, don't worry about it". I would suggest either educating him (if he's receptive) or getting a new doctor. That kind of "thinking" is very dangerous to your health. (*Won't affect you 'til you're 50* might mean you won't develop intestinal cancer until you're 50... not the way you want to be affected!)

Guest nini

I agree with everyone... get the kids tested, That Doc of yours needs an education and FAST before he misdiagnoses or neglects to diagnose anyone else with Celiac simply because of his ignorance. I'm 36, was diagnosed officially 2 years ago, my daughter is 5 she was also diagnosed 2 years ago... It most def. runs in the family, I'm pretty sure my dad has it. I'm also pretty sure my mom has it AND undiagnosed schizophrenia as well.

cdford Contributor

It is possible to not see the damage unti you are in your thirties or forties, but by then the damage has been done and can be massive. Why put your body through that if you know that you are intolerant? It is like someone who is at high risk of diabetes eating sugar out of the sugar jar at every meal just because it will be a few years before it happens. I sure wish I had know twenty years ago and had gone gluten-free before all this damage occurred.

If your doctor is not willing to be educated in the realities of this disease, find one who will. I must admit that my docs initially did not catch on. One of them finally did some research, quizzed the others who then felt silly, so now they are all learning at a rate that astounds me. Every time I go in to one of them, they have the results of some new study someone is doing and how it might effect me. It is a great "problem" to have!

cdford Contributor

Oh, I forgot to mention that in the process one of those doctors figured out that both he and his significant other both had celiac disease!


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
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    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.