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

Need Advice; Should We Retest

linda-r

Recommended Posts

linda-r Rookie
linda-r
Posted

My 14 year old daughter has had chronic mild to moderate abdominal pain since she first stated "my tummy hurts" at the age of 4. She was diagnosed with acid reflux at 10, but continues with chronic pain despite treatment. She has repeatedly tested negative for H. pylori. She has also tested negative for Giardia, food allergies, Chron's and celiac Ab. At that time we discovered she is IgA deficient. Her intestinal biopsy was negative for celiac, but inflammation was noted on the gastric biopsy. She has many of the symptoms of celiac such as enamel defects, occasional tingling in her arms or legs, off and on rash, and sometimes odd stools. She also has had a few episodes of Raynaud-like loss of circulation in her hands when it is cold.

Should I insist on testing for the genetic markers for celiac as well as the IgG ab test that may be needed for those who are IgA deficient? If she is positive for the genetic marker but is Ab negative, should she try a gluten free diet? If she is an undiagnosed celiac, I am worried about the damage to her body and also of bringing on other autoimmune disease if left untreated. Note: her pediatrician thinks it can't be celiac because her symptoms are not severe enough. She is slender but looks healthy. She has asked to return to a GI doctor because she senses something is wrong.

I am new to this forum. Any feedback you can provide would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


shanmcg5 Newbie
shanmcg5
Posted

Hi! I'm new to this whole Celiac thing too...and it's not even me who has it! I have done most of the reasearch and asked all the questions on behalf of my fabulous, yet sick, boyfriend. He is 30 years old but has felt a "thunderstorm in his stomach" since age 10. No test has come back positive and has been told he has IBS, although he has all the signs of Celiac Disease (gut aches, rash, tingling, low weight...on and on). He also was diagnosed with severe acid reflux as a child and actually had surgery to correct this when he was 20 years old. All that being said, he's decided to self-diagnose himself and try a gluten-free diet. At some point, "gut" instinct is better than a clinical diagnosis.

linda-r Rookie
linda-r
Posted
  • Author

Thanks for the reply. Your friend sure has similar symptoms. I am thinking that the main purpose of the genetic marker is to rule out celiac. I think we might try the gluten free diet even if more testing is not done.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

How does your daughter feel about going gluten free?

linda-r Rookie
linda-r
Posted
  • Author

She is willing to do what it takes to feel better. The lack of definitive answers about why she feels lousy is scary for her. Also, she has already eliminated some sources of gluten because those foods make her ill, such as spaghetti. She eats a lot of fruit and vegetables, but they don't give her enough calories.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks for the reply. Your friend sure has similar symptoms. I am thinking that the main purpose of the genetic marker is to rule out celiac. I think we might try the gluten free diet even if more testing is not done.

Just a quick note on the gene tests. In the US they generally only check for 2 out of the 9 celiac related genes. Usually celiacs will carry DQ2 or DQ8 but there are other genes that are also related. It is up to you whether you want to continue with more testing or just give the diet a good strict try. If you plan on more testing, blood or repeat biopsy then it is very important that she remain on gluten until the tests are done. How many biopsies did they take with the last endo? Hopefully it was multiple ones in multiple areas but even then sometimes the biopsies are a false negative for a variety of reasons. No matter what the test results do give the diet a good try, sometimes the body can give answers that the tests cannot.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Since she's willing now while school is out for the summer would be a good time to try it out and see what happens. Ultimately she is going to decide wether to stick with it or not regardless of what the dr's say.

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

Celiac.com Sponsor (A8-M):


linda-r Rookie
linda-r
Posted
  • Author

I have pretty much decided to try the gluten free diet regardless whether we do more blood tests or not. I am not going to put her through another endoscopy. She has a followup appointment today at GI clinic at the children's hospital. I have held off the diet change until after the appointment in case it is decided to pursue more testing. I am not sure if it will be more difficult to adhere strictly to the diet without a diagnosis, but we are going to try. She is motivated to find a way to feel better.

I was not aware the genetic testing was so complex. Would a negative test of the markers done in the US rule out celiac?

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Adherance to the diet shouldn't be a problem. My son and I found that the less gluten we ingested (I never ingested it on purpose, he did) the stronger our reactions were to the gluten we did ingest. You'll want to do the elimination diet and a food log - what she ate/when/how much - and how she's feeling. It's just like when you started her on solids as an infant. Start with a menu of simple foods. Add a new food, take it out, bring it back. If she reacts badly to it, leave it out. It's not as hard or complicated as it sounds and because she is old enough to tell you how she's feeling you can add a new food every three days or so. Also if something doesn't work for her research the plant family. I'm allergic to everything in the celery family.

ravenwoodglass Mentor
ravenwoodglass
Posted
I was not aware the genetic testing was so complex. Would a negative test of the markers done in the US rule out celiac?

No. My family is a prime example of that. My DD went off the diet when she went to college. She was diagnosed by both positive blood and biopsy. She went to another doctor in the city she went to college in and got retested after being gluten free a couple of years. She had healed so her biopsy was of course negative and when they did the gene test she was told she couldn't be celiac because she didn't have one of those two genes. That prompted me to get my genes tested. I am definately celiac with autoimmune and brain impact along with gut problems from gluten. Guess what I don't have either of those two genes either. The genes I have would have diagnosed me with RA if they had tested them before diagnosis and I would likely be dead or in a wheelchair by now. Genetic testing is a tool but not an absolute for sure that you do or do not have it.

ravenwoodglass Mentor
ravenwoodglass
Posted
Adherance to the diet shouldn't be a problem. My son and I found that the less gluten we ingested (I never ingested it on purpose, he did) the stronger our reactions were to the gluten we did ingest. You'll want to do the elimination diet and a food log - what she ate/when/how much - and how she's feeling. It's just like when you started her on solids as an infant. Start with a menu of simple foods. Add a new food, take it out, bring it back. If she reacts badly to it, leave it out. It's not as hard or complicated as it sounds and because she is old enough to tell you how she's feeling you can add a new food every three days or so. Also if something doesn't work for her research the plant family. I'm allergic to everything in the celery family.

This is good advice. The only thing I would add to it is to introduce the new food for a week. With food intolerances it can take up to a week to react, some will react sooner of course. My allergist was the doctor who initially pinpointed the celiac, I am one of the lucky ones who don't show up in blood work. He did it through an elimination diet where I started with 5 foods then added in one new food a week. It wasn't until after the 3rd day that I reacted when I added gluten back in. If I had been adding a new food every three days I would have thought it was the next food I added that I reacted to not the gluten.

linda-r Rookie
linda-r
Posted
  • Author

Thank you for your feedback. I will have to get more info about elimination diet. We are off to the dr. now! Sounds like the gene test is not an absolute answer.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you for your feedback. I will have to get more info about elimination diet. We are off to the dr. now! Sounds like the gene test is not an absolute answer.

You might want to consider seeing an allergist who will help with the elimination diet. Not all will so ask before you make the appointment. Mine literally saved my life.

linda-r Rookie
linda-r
Posted
  • Author

Her doctor ordered genetic and serologic testing for celiac. If they are negative, we will still give a gluten free diet a try for a couple months. It also would be interesting to contact an allergist about elimination diets.

Archived

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

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


  • Member Statistics

    • Total Members
      131,553
    • 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
      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.