Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

First Gi Appt Today


Megan

Recommended Posts

Megan Rookie

Going to my GI today...first time

And it's my COUNTRY Docotor from abck home, so I got in within like two days, from what my mom has told her...I do not have Celiacs and I am NOT Gluten free, it could be a million other things!!! Hopefully we figure it out because I don't really care what it is at this point so long as I can feel better soon. Any advice?

WISH ME LUCK!!


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

Good luck! Take a list of questions and/or symptoms with you, lol. I forgot to mention two very important things to my GI when I saw him that I wished I'd mentioned. I see hime on Monday again for my endoscopy/colonoscopy, so I hope to have time to mention them then.

moonunit Apprentice

Hi! I didn't reply before because I figured I'd be too late for a "good luck" to matter, but good luck anyway!

How did it go?

The only piece of advice I would have maybe suggested is to know before you go what the latest procedures and tests are. My primary care was VERY convincing and adamant that her information was correct and mine was wrong. If I hadn't done my homework I might have believed her.

I'm mostly posting to find out what happened! :)

Megan Rookie

She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

debmidge Rising Star

Oh boy, where have I heard this before? If gluten-free is doing well for you then don't return to old foods.

My husband was misdiagnosed for 27 years with spastic colon, irritable bowel, IBS ....

Good luck and question, question question the doctors if you need to.

schuyler Apprentice

I was also misdiagnosed with many things over the years (spastic colon, IBS, reflux, etc.). I hope that you feel better soon!

Danielle

ravenwoodglass Mentor
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

I hope your on the gluten free diet now and not waiting for the test results, the tests miss a lot of us. You may not need the meds if the diet works. Some of us get relief from symptoms within days. And releif from symptoms is the true test


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



Celiac.com Sponsor (A8-M):



shayesmom Rookie
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

This is just part of an article by Kenneth Fine, M.D. that truly hit a chord with me. You see, my "symptoms" were NOTHING compared to what most people here have gone through. Just seemingly random incidents of D and chronically being tired or depressed (I blamed it on stress at work). I have never been biopsied nor have I felt the need to see a doctor. I just haven't felt THAT bad as yet. But when my dd showed symptoms and then my aunt was diagnosed via biopsy, I figured, why the heck wait and see if I get the full-blown version??? With my dd being gluten-free, I went gluten-light (because I was too tired to deal with separate meals for everyone). I began having energy and having less of my "random" D incidents. A little over a month ago, I decided that I wasn't going to wait around any more and just try being strictly gluten-free to see if I really had an issue too. Turns out, I DO have a problem with gluten. And I am happy that I went gluten-free without waiting for a doctor's permission to do it. I figure I may have saved myself YEARS of suffering by just listening to what my body was telling me.

Unfortunately, the tests (and some doctors) used to diagnose Celiac are archaic and unreliable. There is a huge amount of subtlety to Celiac where the symptoms are continually being re-defined. And even if Celiacs is relatively "rare"....gluten sensitivity is not. So maybe the small bowel isn't being attacked by the immune system. Instead, maybe it's the pancreas (as in diabetes), or the liver (lupus), myelin sheaths (MS), joints (rheumatoid arthritis), brain (autism, schizophrenia, depression)......ALL are related to gluten sensitivity. And I have seen ALL of them improve with a gluten-free diet at the heart of dietary treatment.

I am not trying to be critical of your decisions for obtaining a formal diagnosis, but rather, I hope that if at any point the tests aren't working out, you are able to say, "enough is enough" and trust in yourself to find solutions that work for YOU. Don't let someone else to tell you how you are feeling when in your heart, you know differently. No one knows what you are feeling and experiencing more than you. And THAT is the most valid point of all.

So here's that excerpt from Dr. Fine.

"I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you're having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it all looks 'O.K.', you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn't it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is before the villi are gone, with the idea of preventing all the nutritional and immune consequences that go with it."

The article in its entirety can be found at: Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,877
    • Most Online (within 30 mins)
      7,748

    Sasha bul
    Newest Member
    Sasha bul
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...