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

New to testing/results

Missmelx4

Recommended Posts

Missmelx4 Newbie
Missmelx4
Posted

Hello...

I guess I will just jump right in. I am a 43 yr old wife and mom. I have had issues with constipation since i was an infant, my Mom had to make my formula from scratch and when she started me on cereal she could only do rice because the wheat would cause me to have explosive bm's. Of course, I didn't find that information out until today. As far back as I can remember i have suffered with migraines, anxiety, depression, bowel issues, I was a tall stick growing up until I had my first child. Whenever I ate I felt sick. The Dr.'s she dragged me to see said to either limit my milk intake (yes..now I am pretty much lactose intolerant) but then she found Dr.'s that told her it was a mind over matter and that I was withholding on purpose and she needed to discipline me more.
rew up in the 70's and 80's need I say more. 

June 2014 I had become very ill and they removed my gall bladder and did a liver biopsy. The surgeon was sure I had some form of Hepatitus but all the tests and biopsy came back negative. My gall bladder was a casuality to whatever was making my liver sick (3 times the normal size and enzymes through the roof) That summer I started to develop a strange rash across my eye lids and just under my eyes. It was at times blistering and hive like. It just kept getting worse I tried everything environmentally that I could think of that could be a reason, I no longer wear makeup and it just persisted. At the end of October 2014 I was doubled over in extreme pain abdominal and intestinally. Dry heaving and felt like I was going to give birth even though I knew I wasn't pg. Got to the ER and they did every test imaginable and gave me the good drugs to calm me and the pain down and all they could say is you are constipated. I called b.s. on that and I found an internist to address my rash. She tested me for every auto immune disease and everything came back negative. The rash finally got better in February and I haven't had a flareup since.

I was diagnosed IBS 10 years ago so I figured the bowel issue was my IBS. I was able to tolerate FF milk products so I was very careful with moderating that so I wouldn't have an intestinal flare up. For the past month I have been just sick and exhausted, I went back to college which is going great...all A's but I never know if i am going to get sick. I have both nausea and loose stools and worse. There are times I barely make it to the bathroom. I can no longer tolerate even a tsp of ff sour cream or yogurt and I have to cut out all coffee because they all leave me doubled over in extreme pain and nausea. Two weeks I almost went to the ER, luckily it calmed down enough that I got right in to my physician instead. She put me on Bentl and I have phenergen, waiting for my Zofran to be approved so I can take it during the day when I have school. 

She shipped me to the Gastro Dr. because she all the tests for celiac come back negative and she doesn't think its gluten but I insisted that I can't imagine it being anything else. It all fits. I had the colonoscopy and endoscopy done today, I go for the full results in two weeks. So far this is what he put in his findings...for those of you who have been through this do these seem consistent with Celiac diagnosis? Should I wait for an official diagnosis before going gluten free, just in case they want to do other tests? I know going gluten free before tests can further askew the results for a false negative. Any advice is appreciated. I am just so tired of the pain and feeling sick n tired.

Findings:
LA Grade A reflux esophagitis (I started Prilosec a week ago)
Erythematous mucosa in the antrum
Flattened mucosa was found in the duodenum, suspicious for celiac disease. (Biopsied)
Altered vascular and congested mucosa in the descending colon (Biopsied)
Inflammation was found in the descending colon secondary to colitis. (Does this mean I HAVE Colitis? Never had a dx before?)

Sorry to be so long winded just trying to give an accurate picture.Thanks in advance for any advice you can offer. I want to cry...one because if it is what I had already suspected Celiac then its a relief but at the same time it scares me to death. Perhaps that is my anxiety talking.

~Mel

 

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

Celiac.com Sponsor (A8-M):


Darren Apprentice
Darren
Posted

Hi Mel, just wait the 2 weeks to find out the results of the biopsy, it will let you know if you have celiac or not. If you do the good news is you CAN manage it. Seems overwhelming at first but after you learn what you need to know and make the adjustments you'll be fine. I was recently diagnosed and was totally stressed about how much you need to change things, but I assure you that now it's no big deal. I'm fortunate that I have few symptoms and minor damage so that helps, but you take what life deals you, you adapt and move forward. You CAN do it and you'll feel so much better for it. 

squirmingitch Veteran
squirmingitch
Posted

Mel, I would be curious to know which tests were done for your celiac blood panel. Can you get them, post them along with the ranges for them? They may not have done a full celiac panel on you is why I'm wondering.

 

You sure sound celiac. And I hope he took 6 biopsies.

Palvyre Apprentice
Palvyre
Posted

Your biopsy results appear to be consistent with Crohn's. Did you have any tests specific for that?

cyclinglady Grand Master
cyclinglady
Posted

Squirmingitch asked a good question.  Which celiac tests did you have?  If it were just the SCREENING TTG IgA, along with testing you for an IgA deficiency (which would make the TTG IgA test invalid), your doctor should order the rest of the celiac panel.  Especially since you have biopsy resutls that could be from celiac disease.  I say this because I tested positive on just the DGP IgA test (all others were negative), yet my biopsy results show damaged villi.  I have been on the gluten free diet for over two years and yes, I do have celiac disease.  My original symptom (anemia) has resolved.

So, check your lab tests.  Make sure the rest of the panel is ordered based on the American and British organizations for Gastroenterology (I am not making this stuff up!) 

Good luck!

Archived

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

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


  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.