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

Teen Daughter With Gut Issues

Ada-B

Recommended Posts

Ada-B Newbie
Ada-B
Posted

Hello everyone,

my teenage daughter is 16yo. Ever since she was a baby she's had bowel problems - gas and diarrhea, GERD, projectile vomiting and failure-to-thrive. Her first year of life was constant screaming and little sleep for any of us.

She was weaned onto solids at 3 months (we were told it would stop the screaming - it didn't). At 9 months old I stopped breastfeeding and gave her cow's milk. Oh dear. It came out both ends and she screamed herself hoarse. Shortly afterwards, she were told she was "probably" lactose intolerant and put her onto soy formula. She wasn't as bad, but she still grew slowly, was difficult to feed and miserable.

We kept trying with solids, but she hated food. It got harder and harder to feed her and she started losing weight, so by 20 months old she was diagnosed as a food-refuser and we were sent to a feeding clinic. We got a lot of help from the clinic and they confirmed that my daughter had become scared of food due to the intolerance issue.

My daughter continued being a skinny, food refuser (albeit not so bad as we tried to ignore it and make mealtimes fun) but did start to grow in height and develop normally. However, she regularly complained of tummy pain, never had normal stools and suffered a bloated tummy a lot.

Fast forward to recently. She's doing her exams this year and is quite stressed. For the last two years her tummy pain has been constant and is getting her down. We went to the doctors but all they said was that she was still lactose intolerant and to avoid dairy products at all costs, which we've been doing for years anyway. I requested a celiac test but the doctor practically laughed at me and said it was totally unnecessary.

After that reception, we didn't go back, and have since changed GPs. But my daughter's pain and bloating have been getting so bad we thought we'd try the new doctor. As well as diarrhea, wind, bloating, reflux, cramps and vomiting easily, my daughter had also passed blood. The new GP listened to this history and said celiac was really likely, and did the blood tests (tested her for loads, in fact). Today we got the results: negative, across the board. My daughter is apparently healthy, only with some unusual IBS.

We're not sure what to do. I've hit the Net and looked up "false-negatives for celiacs" and found a lot of hits. But the GP said it was rare to have false negatives and felt that my daughter's lack of anaemia and other symptoms was a sign that it was a functional disorder, not auto-immune. I want to believe her, but... I can't find anything about children with symptoms like my daughters, who didn't have celiacs. So either my daughter's unique, or something funny is going on.

Our GP recommended trying a wheat-free diet, but if that helps, surely it would mean that any further celiac tests would be negative automatically? Regardless of whether my daughter had developed celiac or not? I really don't know which way to turn now. We thought we had the answer and much as I don't want my daughter to have celiacs, I also don't want a constantly sick and depressed teenager on my hands, who feels too unwell to enjoy life.

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

Celiac.com Sponsor (A8-M):


Marlie Apprentice
Marlie
Posted

I presume the doctor tested for Total IgA, DGP IgA, DGP IgG, EMA Iga,,and tGG IgA that all came out negative. Some celiacs test negative but have a positive biopsy. There is also Gluten Intolerance whereby people have the same symptoms of Celiac. Did they check for any vitamin deficiencies like B12, Vitamin D, Folic Acid? Most doctors never check for vitamin deficiencies.

If your daughter goes Gluten Free it will effect the testing for Celiac Disease down the road and she would have to go on a challenge diet before being retested.

Not all Celiacs have anemia. There are many Celiacs who have no symptoms whatsoever. The range and severity of symptoms is all over the map. There are people who have only one positive blood test to all positive blood tests to all negative blood tests who do have Celiac Disease.

Ada-B Newbie
Ada-B
Posted
  • Author

Hi Marlie,

thanks for that. I have to ask about Total IgA etc. I'm not convinced they did all those tests - they just said "The celiac test". We have been referred to a gastroenterologist but we might have a long wait to see him/her. Problem is, she's 16, so around here that means she is almost treated as an adult and they won't give me her results - she has to request them (and she's really shy).

Her B12 was tested and fine. They also tested vitamin D, calcium, iron, thyroid function, diabetes, ESR, ANA and other inflammatory markers (checking for ulcerative colitis). One of the other doctors thought our GP went over the top, but I'm glad that was all checked-for.

We had pizza yesterday (dairy-free) and this morning my daughter has been really bad. I feel guilty sending her to school.

We have an appointment to see the GP again on the 25th (3 weeks time) so I'm now in a dilemma of whether to try gluten-free in the meantime.

mushroom Proficient
mushroom
Posted

The total serum IGA test is really a validation test - if she has normal levels of serum IGA then it makes the other tests more likely to be accurate. If her total serum IGA is low than all the IGA testing is invalidated. The DGP tests (Deamidated Gliadin Peptide) is a newer test and is considered to be more specific for celiac. Some doctors do not know of it and some, even if they do know of it, still don't order it because it's "new".

Your GP is wrong about the false negatives - there is about a 20% false negative rate on blood tests and on endoscopy with biopsy too (which I am sure he is not planning on doing if her blood test was negative)

Your daughter does not have to go in to request the copies of her results in person if she is really shy. She can just mail a request for copies of her records to the doctor's office, to be mailed to her. Make sure the request is signed and dated and specific instructions are given as to where to mail them. The request should include in the wording "copies of all laboratory testing results, to include all blood tests." And ask for anything else you specifically want too.

I would not take your daughter gluten free while there is still a chance of getting a diagnosis, i.e., you are sure all her blood work was correct and complete. Some doctors in dealing with symptoms of such longevity and severity would want to do an endoscopy but it doesn't sound like your doctor belongs to this school. Nevertheless there is still a chance you could get one done. I'm glad you are getting a GI referral because it sounds like she needs specialist knowledge and the GI would order the endoscopy. If she does stop eating gluten it would be pointless to do any further testing by the GI so she does need to stay on it for the appointment. Is there anything that can be done to speed it up??

I am glad all her nutrient tests came out normal; that is quite amazing under the circumstances. I don't think that testing was over the top at all. I just don't know why it wasn't done sooner :rolleyes:

I am sorry this post has jumped around so much - my thoughts are a bit jumbled tonight. One thing to keep in mind, as one of the other posters mentioned, is that it is becoming recognized that celiac disease is only one form of gluten intolerance (and the only form that is currently able to be tested for). More and more doctors are recognizing non-celiac gluten intolelrance and if she has this none of the tests will be positive. So after you have completed all testing that either can be done or you want to be done, be sure to put her on a three-month strict trial of the gluten free diet.

Marlie Apprentice
Marlie
Posted

I would fill out the forms for your daughter to get her labs and have her sign it and then deliver it to the doctor. When you see your doctor ask to see the labs. If he hasn't done a whole panel which a number of doctors don't ask him to. I would wait on the gluten free business until you at least get a hold of the results. If it seems like they won't do an endoscopy or you don't want to go through with it then I'd try gluten free. An endoscopy may still come up negative but the culprit still remain the gluten. You are lucky to have a GP that ran all those tests. Its definitely not over the top. More doctors should. I had to request the tests even after diagnosis. We haven't checked everything but a vitamin D deficiency was found. I wish we'd checked Niacin because I suspect that. Do you have any tick born illnesses where you live. You might want to check that too.

Four months prior to my daughter's diagnosis, it was evident that she became ill every time she had pizza. I suspect now that it was the quantity of Gluten that made it noticeable.

mommida Enthusiast
mommida
Posted

Your daughter will most likely have to have an endoscopy with biopsy. I would ask the doctor for a list of what he/she feels the endoscopy is being done to diagnose. I would also make sure the GI is aware of eosinophilic gastro. disorders and this testing is being done.

Gluten should not be removed from her diet while testing is being done. (It can be a "trigger" for Eosinophilic disorders too!)

Ada-B Newbie
Ada-B
Posted
  • Author

Thanks for your help everyone.

The situation escalated last night, with my daughter unable to sleep due to tummy pain and needing the bathroom. We went to the emergency doctor's and saw the same one from the other day. We confirmed that all the tests were done (Total IgA etc) and also that the IBS medication wasn't working at all.

We're seeing the gastroenterologist in a couple of weeks (I thought it would take ages) and we're under strict instructions not to change her diet at all in the meantime. Our GP feels this looks more like Crohns than anything else, which is worrying to me as that is such a nasty illness, but until we've had further tests we can't be sure it's not some kind of atypical celiacs. They want to do a colonoscopy, endoscopy and various other tests. I just hope we finally figure out what is wrong with her.

I also went up the school and took the doctor's letter so they can write on her record that she is genuinely sick - she was panicking because they can't attend Prom without 95% attendance, but we've been assured that only applies to kids who skip school, not kids who are ill. They've also given her a "medical excuse pass", which means she can go to the bathroom whenever she needs to, without having to give the teacher a reason or ask permission.

I've sent my daughter to bed with codeine and a heat pad. We're hoping the codeine might calm her gut down a little.

This is a scary time for me as a parent - I'm trying to be brave but it's horrible to see your child suffer. I never thought I'd wish my child had celiacs :(

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Oh, I'm sorry she has had a flare-up, but glad you got answers to some questions. Also glad that the GI appointment is only a couple of weeks away. IF I were a GI I would certainly scope both ends too because her picture is a bit fuzzy. It is only by doing all the tests that you can find the problem. Some doctors give up way too easily and stick the IBS label on and move on to the next patient :(

It sounds like things will become a lot clearer in a couple of weeks. I know this is a scary time for you, but hang in there a bit longer and I hope you get some positive answers soon :)

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.