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

Diagnosing Celiac

anniebeth

Recommended Posts

anniebeth Apprentice
anniebeth
Posted

Hi. I am new to this forum. I have an 18month old daughter that has always suffered from food intolerances. She was diagnosed with an intolerance to milk at only a few months old. After that, quite a few other foods popped up as well. Since these are intolerances and not "allergies" that (to me) means this is a problem with her gut. The pediatrician recently suggested celiac disease as a possible cause. We did a blood test, and it came back negative. This weekend I read an article in Parent's magazine saying that the blood test is not always accurate on toddlers. Why is this? Despite the food restrictions we are already living with, she continues to have diarrhea and is not even on the growth chart for weight. At birth, she was an average 7lb baby. I now feel that maybe she does have either celiac disease or gluten intolerance. I want to go gluten free. The doctor, however, feels that the blood test results mean that she is definitely not having problems with gluten. What should I do?

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

Blood tests can be inconclusive especially in young children. You can definately start a gluten free diet. This will tell you whether your child is sensitive or not. Your her mother, you know her best. Don't let any doctor or test results tell you what your instincts already know.

I hope she's feeling better soon. She's lucky her mom is so on top of her health.

Genna'smom Apprentice
Genna'smom
Posted

My daughter had blood tests and they were negative but the only way we found out was that she had a biopsy done.

anniebeth Apprentice
anniebeth
Posted
  • Author

Thanks. I think I'll go to the store tonight to get some gluten free foods...

mstroud Rookie
mstroud
Posted

I think you're smart to question the results. I've heard many times that the tests can be negative in children. My oldest son (8) has Celiac Disease which was diagnosed via blood work and a biopsy. He was diagnosed after a year or more of chronic stomach pains, fatigue, and joint pains. His blood work was not horribly high, but the doctor said that we probably caught it early on. He also had a genetic test with the blood work which came back positive for a marker. My middle son had behaivoral problems and seemed to be tired all of the time ... I kept reading that could be early signs of celiac. He was tested and his results were negative, but he did come back with a double genetic marker (DQ2 homozygous). I also tested postive for the genetic marker (also the double genes), but negative on the blood work.

Sorry ... long story short is that my middle son who had negative blood work has done very well on the gluten free diet! His moods are MUCH more even (as even as it gets with an energetic 4 1/2 year old!) and his fatigue disappeared. I feel TONS better on the gluten free diet (had depression, felt very overwhelmed most of the time, and had stomach pains before the diet). So, I am totally agree that it's worth a try! This forum is a tremendous help in getting started with the diet!!!

Good luck! Margaret

The Kids Folks Apprentice
The Kids Folks
Posted

Hi AnnieBeth,

Our son also had negative blood work at age 7. Our ped's said that he didn't have it and sent us to a peds GI - who also felt that we should treat the symptoms and not the cause. (chronic C, slow or no growth)

DS weighed almost 9 lbs when he was born. Each year he started to slowly drop on the growth chart. Twice being failure to thrive (once at 4 months and again at 7 YEARS). You are good to believe that something is not right!!

After a few weeks of listening to the doctors treating his symptoms - I was like a crabby old mamma bear and said enough already! We started the gluten free diet and it has been tremendous!! He is like a new kids. We are starting to see some weight gain, and he has gained almost an inch in height!!

I read online about ?doctorceliac? who believes that the doctors should recommend the diet to help our kids get healthy and GROW now and they can try the gluten challenge when they are older. But his main thing is let's help our kids feel good now!

We opted to not have the biopsy at this point - we decided that we would go gluten free regardless of the results!

The Kids Folks

KaidensMummy Rookie
KaidensMummy
Posted

My 2 yr old son has been having the same problem but we have not had any testing done. The doc is telling us to go on a gluten free diet for 2 weeks to see if it helps out with the chronic diarrhea.

SO, now I am making up a list of what to buy! :) Good Luck

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

Celiac.com Sponsor (A8-M):


anniebeth Apprentice
anniebeth
Posted
  • Author

So we didn't have any diarrhea today. We had somewhat normal looking poop. I think I'm going to stick with this for a while and see what happens.

ang1e0251 Contributor
ang1e0251
Posted

Very good news! Looks like you are on to something!

kbalman Rookie
kbalman
Posted

kuddos to you annie my now 18 month old son has been gluten free for a little over two months. After going through lots of blood work, biopsy (that they didnt do right) 2 gi docs, dietician (who wouldnt help us with out diagnosis) 2 pediatricians. We opted to try the diet. I have read several articles that say under the age of 6 tests are not accurate even biopsies. He also had severe failure to thrive, constipation, anemia , skin issues etc. He has finally gained weight is wearing 18 month clothes, grown and much happier.

Go with your gut feeling. My son loves his gluten free food. Also FYI if you email alot of the gluten free companies they will send you coupons.

anniebeth Apprentice
anniebeth
Posted
  • Author

So we were doing well and then she had diarrhea this afternoon. I thought, "oh well, I guess that wasn't the problem after all." Then I asked my mother in law what she had for snack yesterday afternoon and she said "cheerios". I had shown her what to give for snack, but apparently they were at her house for some reason and she gave her cheerios instead. So. Would that be a reasonable time frame for a reaction? Should it have been sooner?

mamaesq Rookie
mamaesq
Posted

The reaction can be that quick. When I have something with gluten, I can tell usually within a few hours. Yesterday I licked an envelope (apparently a big no-no, and I had forgotten this), and then took a tiny piece of icing off of a cake, I figured since it was touching the part of the cake that was touching icing, I would be ok. Apparently not. A couple of hours later, I had explosive diarrhea. I'm not sure if it was the envelope or the icing, but I was gluten-free the rest of the day.

I am taking my 4 year old for a follow up to the pediatric GI on Tuesday, his bloodwork also appears to be normal, but I'm not convinced. He was 30.4 lbs at his 3 year appointment last November, and he's 32.0 pounds now. I think that a gain of under 2 lbs in a year is very concerning...He complains about stomach aches, has canker sores, and is constipated. I am tempted to start him on a gluten-free diet to see if he grows, regardless of what the doctor says.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

You might want to report this apparent dietary response to your doctor.

He might want to do an endoscopy/biopsy (which DOES have risks, and anyone who says it doesn't is either mistaken or lying). It won't be accurate unless your daughter is eating gluten, though (same with the bloodwork). Both bloodwork and biopsy can be inaccurate in toddlers because sometimes it takes years to cause enough damage to show up on the tests.

He might want to continue with a trial of the gluten-free diet, which I think is much more reasonable--but doctors don't make as much money on that as they do on endoscopies/biopsies! And if there is something else going on, an endoscopy might show what. But you could always do an endoscopy later, if there IS any indication that something else is going on.

Be aware that gluten-free breads, cookies, pancakes, etc., are more difficult for a damaged tummy to digest. You might want to stick with plainer, unprocessed foods for a while, and go very easy on the gluten-free flours.

Good luck!

ang1e0251 Contributor
ang1e0251
Posted

I react quickly to "normal" amounts of gluten, the same day. Smaller amounts I react to a couple of days later or even very small amounts, it takes every day exposure for a few days. But each person reacts differently. It's very reasonable to hear she ate a food one day and reacted the next. Put these foods in your food/ reaction diary and report them to her dr. I'd say that's a sign of a definative response.

Archived

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

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


  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    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.