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

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
      131,553
    • Most Online (within 30 mins)
      7,748

    Jennifer CCC
    Newest Member
    Jennifer CCC
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.