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

Worth Retesting? I'm Absolutely Miserable

joyceelaine

Recommended Posts

joyceelaine Newbie
joyceelaine
Posted

Please help, I was tested 4 years ago for celiac and the results were negative, doctor said it was ibs which I've had all my life. However, for every day the last 2 years, I can count on one hand, the number of times I've had a bm without pain and cramping, and loose stools..This is ridiculous to have it every day, every day, every day.......

I had a colonoscopy and endoscopy in Jan of this year which were normal. Does an endoscopy always show the small intestine, or might it have only looked in my stomach?

Also, was the celiac testing adequate?

The tests were (tTG) AB, IGA - neg

Gliadin AB IGA - neg

IGA, serum - normal

Endomysial AB IGA - test not performed (TNP-reflex testing not required)

Endomysial AB titer - test not performed (")

(tTG) AB, IGG - test not performed (")

I hope someone can tell me why some tests were not performed, I have lots of other symptoms I won't go into now, but many of them point to autoimmune diseases, but every test always comes up negative. I have chronic lyme disease (actually 3 different co-infections) with intensive antibiotic treatment, but doubt it was cured.

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

Celiac.com Sponsor (A8-M):


nu-to-no-glu Apprentice
nu-to-no-glu
Posted
Please help, I was tested 4 years ago for celiac and the results were negative, doctor said it was ibs which I've had all my life. However, for every day the last 2 years, I can count on one hand, the number of times I've had a bm without pain and cramping, and loose stools..This is ridiculous to have it every day, every day, every day.......

I had a colonoscopy and endoscopy in Jan of this year which were normal. Does an endoscopy always show the small intestine, or might it have only looked in my stomach?

Also, was the celiac testing adequate?

The tests were (tTG) AB, IGA - neg

Gliadin AB IGA - neg

IGA, serum - normal

Endomysial AB IGA - test not performed (TNP-reflex testing not required)

Endomysial AB titer - test not performed (")

(tTG) AB, IGG - test not performed (")

I hope someone can tell me why some tests were not performed, I have lots of other symptoms I won't go into now, but many of them point to autoimmune diseases, but every test always comes up negative. I have chronic lyme disease (actually 3 different co-infections) with intensive antibiotic treatment, but doubt it was cured.

I totally understand your pain. I posted my story several days ago (you can check it out if you're interested), and I too am severely sick and miserable and can completely relate to your statement about counting normal BMs on one hand. I tested negative on the celiac blood tests and can't even get a Dr. to perform an endoscopy based on normal blood and stool tests. I am finally to the point where I am so miserable I am starting a gluten free diet to see how I feel. If there are positive results, then I know where I stand. No dr. would be able to discount the connection then, with or without standard proof! (I did call my drs office and let them know what I was doing and they were supportive, but still no mention of endoscopy).

You could also check out enterolab. I am considering ordering the test from them to confirm my suspisions since I can't get a dr. to help diagnose me. It's rather pricey, but I've read many positive things on here about it.

It might be weird to say this, but if you have suspisions even after the negative tests, i think chances are you might still want to give the diet a try and will see positive results. (listen to me giving you advice when I am in the same boat) I have never been more sure about anything in my life, despite the fact that multiple drs tell me there is nothing "technically" wrong with me. Good luck.

ravenwoodglass Mentor
ravenwoodglass
Posted

You could get retested or you could simply give the diet a try. As mentioned you could also go with Enterolab testing, if you choose to do that you can go ahead and start the diet while your waiting for the kit to come as you can be gluten free for a while and still have an accurate test.

If you do choose to retest with blood and enso do keep eating gluten till those tests are done and the day you finish the last of the tests get on the diet. You don't have to wait for the test results. There are unfortunately too many times that the tests are a false negative so the diet should still be done for a bit to see if it helps regardless of test results.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Over the past few years, there have been many reports on this forum from members who had every symptom of celiac--INCLUDING positive dietary respons--but had negative tests.

In your case, it's difficult to tell whether or not the tests they did run were complete. Endoscopies do not necessarily go to the small intestine; I had two that didn't, because they weren't looking for celiac. They absolutely should have run the endomysial tests for you. But since they didn't, it seems to me that the first priority is for you to feel better, which means ruling out celiac/gluten intolerance by trying the diet.

There have also been a surprisingly large number of members of this board who tested positive for Lyme disease, including quite a few who were diagnosed with chronic Lyme. That's a very, very difficult one to deal with, and apparently, it can cause a supposedly non-celiac kind of gluten intolerance. Recently I did read that in some cases, the patients actually sero-converted to a celiac-specific gluten reaction, but I can't remember where I saw that.

Either way, it sounds like gluten-free and dairy-free might be your first step to feeling better; perhaps that would also help the Lyme and co- infection treatments to be more effective.

joyceelaine Newbie
joyceelaine
Posted
  • Author

Thank you both for your replies. I have in fact started a gluten-free diet as of yesterday's posting but I don't know how well I'll do. I thought it wouldn't be too bad at first, but last night I was reading about how hamburgers can't even touch the bun(I thought if I would just eat a hamburger w/o the bun I'd be okay), cross contamination, etc. and It will be a lot harder than I thought. I eat out a lot (I hate to cook) and am a picky eater. If I did have celiac, and eliminated a good portion of gluten from my diet would it help?, or do you have to be 100% gluten-free for it to help? So I'm thinking I should go ahead and get the bloodwork again.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you both for your replies. I have in fact started a gluten-free diet as of yesterday's posting but I don't know how well I'll do. I thought it wouldn't be too bad at first, but last night I was reading about how hamburgers can't even touch the bun(I thought if I would just eat a hamburger w/o the bun I'd be okay), cross contamination, etc. and It will be a lot harder than I thought. I eat out a lot (I hate to cook) and am a picky eater. If I did have celiac, and eliminated a good portion of gluten from my diet would it help?, or do you have to be 100% gluten-free for it to help? So I'm thinking I should go ahead and get the bloodwork again.

If you have celiac you have to be 100% gluten free to stop the antibody reaction. It is the antibodies that cause the issues and even a small amount of gluten will keep them going. It can be hard especially at first. I would go ahead and get the blood work done again and then go ahead and give the diet a good shot. It can seem overwhelming when you first start but if you are celiac your improved health and quality of life will make it worth the trouble.

momxyz Contributor
momxyz
Posted

I am new to the diet too and it does feel like I am spending more time in the kitchen. But I do think its worth it.

Just go one day at a time and don't let all the details overwhelm you. Just like your car can't go from zero to 60 in 5 seconds, you won't be able to go 100% gluten free in a single day. It's a learning process.

In my family's case, I started with the very obvious things like you are doing - no bread or obvious wheat products - for my daughter and myself. After the first week or so began studying labels in the pantry... and got some gluten free cereal from a local organic food store.

Bit by bit we are figuring out what is good for us and what is not. We've slipped up a few times - both inadvertently and in moments of weakness. We realize the mistakes but don't beat ourselves or each other over it... just refocus and keep going.

It's been almost five weeks now, and I am just beginning to look at possible cross contamination issues in my kitchen, as we aren't expecting the other family members to change their eating habits. Although, my daughter made a totally awesome gluten free pizza that my husband raved about, and he now likes the brown rice pasta better than the regular kind.

I know you said you hate to cook. I don't hate to cook, I just don't like spending the time doing it when I have so many other things I want/need to do. But I have had a real sense of accomplishment when I have made gluten-free things that really do taste good!

hang in there... Rome wasn't built in a day.

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

When you get tested, ask for each individual test to be run. It is my understanding that some labs will just not run all the testing if certain ones aren't positive. Someone correct me if I misunderstood that one.

I know you said you don't like to cook but going gluten free, you really are going to have to prepare some meals. Many people have reported that they actually found they enjoyed it more than they expected. You really can start simply. We can help, if you'll let us.

joyceelaine Newbie
joyceelaine
Posted
  • Author

Thanks everyone, your answers were extremely helpful!

Fiddlefaddle- Thanks for clearing that up about the endoscopy, I don't think the dr was looking in the small intestine for celiac since he's the one who had ordered the blood test and said they were negative. Also that was very interesting about lyme disease causing gluten intolerance. So many things seem interconnected, especially where lyme is concerned. But I'm done with the lyme treatments for now. I tried just about every oral antibiotic in the book, then went to intramuscular injections, and finally intravenous for 2 months til the insurance ran out. Here's something interesting, when I was on amoxicillan I had a peak and trough test to see how well my body was absorbing it, and the amoxicillan level in my body was undetectable. They thought I didn't prepare properly so they made me take it again, with the same result. Does this sound like the malabsorption problems celiacs have that I've been reading about?

Ravenwoodglass- thanks for clearing up my confusion about whether a little gluten would be ok. I am definately trying to go 100%. Just went shopping today with my(not so) little gluten-free list, and picked a few things up in the gluten-free aisle, and what I wasn't sure about, came home and looked it up online.

ang1e0251- your advice was also very good. I will definately ask for all tests there are, especially the ones that weren't done last time. And I actually made a home cooked meal tonight that I'm pretty sure was gluten free, and am cooking again tomorrow night. I actually found some gluten-free choclate cookies in the gluten-free aisle and am thrilled that they taste so good!(I'm a hopeless chocoholic)

momxyz-thanks for your support also.I am trying to follow the guidelined 100%, but don't know about all the little obscure ways gluten can get into your diet, so that will my biggest challenge.

I really appreciate eveyone taking the time to help me. Could you bear with me for one more question? When I get the bloodwork done,I've heard 2 different sides to this, do I go back off the gluten-free diet and eat normally for the test like some say?, or do I keep eating the same gluten-free diet once I've started it?, since gluten stays in your system for a few months, even after you've stopped eating it.

Archived

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

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


  • Member Statistics

    • Total Members
      131,557
    • Most Online (within 30 mins)
      7,748
    kghorne3
    Newest Member
    kghorne3
    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.