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

Impatiently waiting for scope results

blueeyedapple

Recommended Posts

squirmingitch Veteran
squirmingitch
Posted

I agree about encouraging daughter to get scoped.

Yes, since she had 2 positives, the doc needs come up with a really good answer. 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

The endoscope can only see about 5 feet into the beginning of the small intestine.  That leaves 17 feet of unexplored country.  So, there is an assumption by the doctors that the remaining 17 feet match the first 5 feet that is visible.  Which is just that, an assumption.  I guess 5 feet is better than nothing, but it doesn't tell the whole story IMHO.

blueeyedapple Apprentice
blueeyedapple
Posted
  • Author

My daughter will likely be getting scoped when she returns home in the spring.  She was hoping to avoid it because she has gone gluten free and isn't terribly excited about doing a gluten challenge.  If I had been diagnosed positive then the doctor was going to have a look at her test results and decide if it was required - so now it appears that it will be required. That is her choice though.

I am frustrated because I thought we had an answer, not the answer I wanted but still an answer.  I just want to FEEL BETTER!  Now I am stuck wondering if it was indeed the answer and they just missed it or if something else is going on and we need to dig more. 

I don't actually care about getting properly diagnosed except that I feel it is important for my family.  The tax credits that are available to me are probably way more trouble than they are worth.  If my symptoms resolve on a gluten-free diet I will absolutely ask my GP for a follow up test in 6 months.  If, at that time, things come back negative then I will assume that I do indeed have celiac disease and be done with it.

And if my hives clear I will jump for joy.

I will take a list of my current symptoms, a note of which ones have resolved (if any) in the next month, and a copy of my daughter's test results when I see the doctor.

blueeyedapple Apprentice
blueeyedapple
Posted
  • Author

P.S. GFinDC, my husband does not agree with your tag line!

For the past month I have been blaming the horrendous smell on celiac disease . . . now I have to go back to blaming the dog :wacko:

GFinDC Veteran
GFinDC
Posted

Well of course, dogs are notorius for smelly comments! :)

Here's list of the more common antibody tests.

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (ttg) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

  • 3 weeks later...
blueeyedapple Apprentice
blueeyedapple
Posted
  • Author

Gluten free, week 3.

Diarrhea has stopped.

I have never been so happy!

I see doc for follow-up in 2 weeks to discuss my scope results.

notme Experienced
notme
Posted

i've never heard of such a hard to get a dx disease as celiac.  my blood test (not the correct ones or complete panel) came back negative, but since i regained 20 lbs in a few months, my gi doc opted not to do a gluten challenge.  when she did the scope, she could see the damage (25 years worth) but my biopsies came back negative.  she pretty much told me that the damage she could see and my body's positive response to the diet was 2 out of 5 criteria used to make a diagnosis.  you only need 2, which you have - your positive bloods and your positive response to the diet.  plus, my son has type 1 diabetes, which is the same gene (never understood where in the world he got that from, now i apologize to him :( for giving him crappy genes)  if you've ruled out anything else that it could be (crohns, lymphoma, etc)  i would stop chasing my tail and give the diet a shot.  i have had multiple (seemingly unrelated) symptoms clear up including a dull headache that i didn't even realize i was suffering with until it went away.   <all things, like you said, that creeped up until it was the new normal)  it is my personal belief that doctors are loathe to diagnose celiac because there goes their cash cow that they can make a ton of money off of treating all the symptoms individually.  r.a., fibromyalgia, ms, nuero issues, vitamin deficiencies, imagine how many doctors you can cheat out of their almighty dollar just by eating gluten free.   trust me, i have had every pill thrown at me and they just kept guessing away until i was so emaciated, they wanted to put me in the hospital on a feeding tube.  i said NO and they miraculously came up with the idea that it might be celiac..  boy, did they lose a ton of $$ because i haven't had so much as a sniffle (used to be sick all the time, now, everybody else gets the ick and i do not - used to get bronchitis/pneumonia every year - haven't taken an antibiotic in 6 years)  because your immune system starts working like it should, you start absorbing those nutrients your body needs to function properly :)  i'm kind of a motor head, so i like this analogy:  it's like trying to run a diesel engine on gasoline.  once you start using the correct fuel, everything works like it should.  you do whatever you want, but i wouldn't let the doctor jerk you around.  read up around here.  there are over 300 symptoms and all of us on here have major and minor ones (and hardly ever 2 people with the same exact combination)  one thing many of us have in common?  terrible experiences with doctors who don't know (or won't know) enough about this disease to make a proper diagnosis.  welcome to the forum. :) 

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted
8 hours ago, blueeyedapple said:

Gluten free, week 3.

Diarrhea has stopped.

I have never been so happy!

I see doc for follow-up in 2 weeks to discuss my scope results.

I hope you continue to improve !

blueeyedapple Apprentice
blueeyedapple
Posted
  • Author

My GI doc seems knowledgeable so I am not passing judgment on him yet - we will see what he says in two weeks.  It is an awful long wait to see him again but it will give me more than a solid month of gluten free under my belt.  I will be taking with me a list of the symptoms I have been having for the past 7 or 8 years and noting which ones are better on a gluten-free diet.

At this point, I don't really care.  Being gluten-free for a month has been difficult, especially around all the Christmas baking goodies, but I have managed it and I feel better - so much better.  The symptoms really do creep up on you but when they started to go away it happened pretty quickly.  I felt remarkably different after just a couple of days.  I am not 100%, but after feeling bad for so long I feel like a new person.

Constant stomach ache after eating is gone.  I did get "glutened" once and the pain came roaring back.
Diarrhea seems to be mostly resolved.  I am not holding my breath yet but it has been 5 amazing days of not sprinting for the bathroom.
Fatigue and brain fog have lifted.  I am still tired, but I don't feel like I am dragging around a ton of bricks with me anymore.  I have energy.
Joint pain is also getting better, I was constantly in pain before I went gluten-free.

Hives are still present.  If they go away I will never even look at bread again!  My husband says I don't complain as much about being itchy.  I think I am just as itchy but since I don't feel so horrible and unwell all the time I don't complain about it as much.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.