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

Starting out


Treowe

Recommended Posts

Treowe Newbie

Hi, as a Noob, I am a little intimidated by what may come to be a major change in my eating habits. My middle has been uncomfortable for a couple of years and I got no help or input from my GP so I went to a GI Dr who checked me throughly and found nothing out of sorts other than some minor irritation in my esophogus and prescribed a medication. My stomach/mid section still is uncomfortable and really disturbingly big. The GP finally suggested that I try being gluten free for 6 weeks to see if it made a difference. I have no other symptoms of gluten intolerance, as far I know. I've had anxiety issues longer than the stomach discomfort but I am having depression and lethargy so I guess I will try to rule this out.

My question is, how strict does this have to be in order to ascertain that there is a correlation between my discomfort and possible gluten allergy? How stringent is the cross contamination issue, like using a toaster oven and other daily food prep precautions. Right now, eating like this for 6 weeks feels like 6 years. But if I start to feel better in a few weeks, I guess I'll make the transistion permanently, and I'd really like my gut to be normal looking, or at least not 7 months pregnant. 

Female, nearly 70, 5'8", overweight at 170 lbs. 

Thanks.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Your GI is sadly mis-informed! :angry: You should be tested for Celiac Disease before embarking on a gluten free diet.  Celiac Disease should be ruled out first!  So many doctors think that you have to be malnourished and wasting away to have celiac disease -- not true!  You can develop celiac disease at ANY age.  Do you have any other autoimmune disorders?  

Celiac disease is also genetic.  So, if you have it, your kids and sibliings should be tested even if they are symptom free!  Celiac Disease has so many other issues that come with having it.  That's why having a proper diagnosis is important.  You will get the care you need.  Also, sticking to a life-long especially when you are older and it is hard to make changes in general (hey, I'm there!).  

 Your GP can actually order the celiac blood panel.  In addition, I would search around for another GI (one who is celiac savvy).  

Here's a link regarding the exact tests:

Open Original Shared Link

I encourage you to read up on celiac disease.  Only you can be your best health advocate!  I wish you well!  Feel free to ask any questions!  :)

Treowe Newbie

That's interesting. I asked her if there was a blood test I could take, she said no. I don't think she feels I have celiac disease, per se, just wants to rule out an allergy or sensitivity to gluten. If after the 6 weeks, there is no difference, she suggested eliminating something else from my diet. She mentioned leaky gut and GMOs as well. Thanks for your input. I appreciated it.

squirmingitch Veteran

I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!!

I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this interview. It's interesting reading. Please take a little time to read it all the way through.

Open Original Shared Link

Treowe Newbie

I will request the test. Thank you. 

cyclinglady Grand Master
28 minutes ago, Treowe said:

That's interesting. I asked her if there was a blood test I could take, she said no. I don't think she feels I have celiac disease, per se, just wants to rule out an allergy or sensitivity to gluten. If after the 6 weeks, there is no difference, she suggested eliminating something else from my diet. She mentioned leaky gut and GMOs as well. Thanks for your input. I appreciated it.

Ugh!  Run from that doctor.  Are you located on Mars?:huh:  Kidding aside, here's the deal.  If you go gluten free just to test it out and you feel good, then you might think you have a gluten issue.   A few months or a year go by and you realize that this is HARD.  REALLY HARD.  So, you start to cheat.  You get sloppy.  You start sharing a toaster.  Your symptoms come back, but you don't worry about it or maybe you start to get violently ill.  Symptoms so different from your old symptoms that you think you must have something else. 

(You could be the type of person who makes a decision and sticks with it.  But those are rare folks.)  

I could go on with more stories, but type in lymphoma in our forum's search box.  Look at member's who were misdirected by their physicians and who have had celiac disease all along.  Now they are dealing with cancer.  

It is not my intent to scare you into thinking you have cancer.  The odds of you having it are slim and none.  I am trying to scare you into finding another doctor who really CARES about you and follows a normal standard level of care (like reading currant medical journals or checking Dr. Google, like my ER neighbor doctor does because he can not know everything!)

It's just a simple blood test.  So easy.  If negative, then give the diet a try!

cyclinglady Grand Master
45 minutes ago, squirmingitch said:

I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!!

I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this interview. It's interesting reading. Please take a little time to read it all the way through.

Open Original Shared Link

Hey, do you have to be a member of Medscape to see the article?  I could not get in pass the sign-in page.

 


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran
24 minutes ago, cyclinglady said:

Hey, do you have to be a member of Medscape to see the article?  I could not get in pass the sign-in page.

 

I guess you must have to be a member then. I don't know because I am a member. It doesn't cost anything & I've never gotten any junk mail from them or anything unpleasant. 

Gee, I didn't even think about that when I posted the link. OOPS!

Let me know if you need me to copy & paste it because I will if you want.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • 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.
×
×
  • 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.