First off, I am about a month behind in my emails. So for all of you who have written to me asking for advice…I apologize. Celiac Awareness Month was a bit of a whirlwind and it took the wind out of my sails a bit.
But I’m back and ready to help all who need it.
Today’s Dear Gluten Dude comes from a doting Mom with celiac disease who is trying to do right by her children. They are showing some celiac signs but the blood work tested negative and she is debating whether she should order endoscopies for them. If any other parents out there have been in her shoes, please advise.
Here’s her email.
Hey Gluten Dude!
I have Celiac. I am the mother of a 3-yr old boy and an almost-one-year-old girl. We introduced my son to gluten after his first birthday. Never gave Celiac any thought until now, since most of his symptoms were different from mine. Only ‘googling’ them now do I suspect Celiac. His blood test came back negative, but I’m not convinced.
Both my kids are small for their age. At 18 months old, he developed a red, blotchy, hot-to-touch rash all over his body, which 3 doctors could not explain. It lasted 3-4 days and disappeared on its own. At 2 he developed asthma and allergies, after a stubborn 6-month bout of bronchitis and pneumonia. He was put on Singulair and his cough went away. Soon after, he started with terrible insomnia, was a nightmare to get to bed, and after hours of fighting would fall asleep but wake up frequently during the night. Now, having just turned 3, when potty training was fiiiinally starting to work out, he had diarrhea for a month. Back to diapers we go, as he has no control. Poor kid – kept telling me “don’t worry mom it was just a toot!” Then after realizing what happened, informed me it was in fact a “poop toot” instead. Lol.
About a month ago, my daughter (who has suffered with frequent constipation since we introduced solids at 6 months – and we didn’t wait to introduce gluten this time) started passing white stools. Brought her to the Dr who ruled out blocked bile duct since she was not jaundiced. He suggested Celiac may be the culprit.
So we decided to go gluten free, and wouldn’t you know it, no more poop toots, and no more white poop. My son goes to sleep on his own with no fighting, and my daughter is growing some chubby baby cheeks.
I just am curious if there are any other parents out there whose child’s blood test was negative, but were re-tested positively later on, or who had the endoscopy and tested positive. I just am trusting my ‘gut’ (haha) and would rather just keep them GF forever than put my babies through the horror of an endoscopy! Since I’m already GF it’s not a big deal; I’ve been diagnosed for 6 years, so I’m well educated with food prep, but when I had to watch my boy cry his eyes out at a birthday party last weekend when I told him he couldn’t have cake, I just wish I could find out for sure.
Sorry for the rant! I just want to do the best thing for my babes, and after spending my childhood constantly sick, I want to make sure they never experience that.
45 thoughts on “Dear Gluten Dude: My Kids Tested Negative for Celiac but I'm Not Convinced. I Need Advice.”
In our house my 5 year old was the first diagnosed and he had a scope at 4. Looking back I feel bad for having him have it since his blood test was sky high we were sure he had it. 1 year later he is a new man. Now, my 7 year old had a negative blood test but has always had vague GI issues and problems. Pretty sure he has problems. We sat down and discussed it with him after his results came in and he decided to go gluten free. He is so much healthier and his vague GI problems are gone. We maintain a GF house as all 3 of my children eat GF and my 5 year old is very sensitive to cross contamination. But my 7 year old refuses gluten at school and parties on his own because it makes him feel bad. He never had a scope but has himself associated eating gluten with not feeling well. We probably won’t ever have him scoped unless he has further problems or wants to eat gluten when he is older. My 3 year old was never scoped either. Just didn’t seem worth it for him at 2 and now he has been GF for over a year also with great improvement.
Hey There GF Mommy-
That is a tough question. My child does not have Celiac, so my advice might be very different than other blog posters. I would get the tests done just to know what the damage is to the digestive track. I know the scope will be far from pleasant. I hope the best for you and your family..
Here is a good link to take a look at..
I’m not sure if I read correctly or not, but did the children get their blood work done before or after going gluten free? If after it is totally normal for the tests to be “negative”. I would not hesitate at all having the children scoped. They are going to be “sleeping” while the test is being performed and they will remember nothing! So my advice, for what it’s worth, is to have the scope done! Good luck!
I am inclined to agree with Jersey Girl. I, myself, am also a mama with Celiac and had all 4 of my kids tested. My 3 girls’ blood tests were high but my son’s was inconclusive. I had them all scoped, including my son, but only the girls had damage. My son had mild duodenal blunting but that’s all. I think its important to have the official diagnosis, especially if you are planning to send your kids to a public school, so that there can be safe guards in place against discrimination. Also, my experience is that people take the word “disease” a lot more seriously than “intolerance”. All that being said, you are the mom and you know in your “gut” (haha) what is right for your family. Best of luck!!!
My son has Celiac disease and had high blood levels and a positive scope, however, I have been told that the blood levels are not always accurate (in both directions). I would get the scope. It was not the worst experience for him (age 2). It was a short procedure and he was not uncomfortable at all afterwards. In fact, I think routine shots were worse for him. If it were my kid, I would scope him.
I went through a similar situation and after 2 years of testing at six months apart (4 total tests) they did finally show up as a false positive on the final test. So my pediatrician gave me the go ahead to put them on a strict gf diet. Go with your gut. Moms know what is best for their children. Keep up the testing.
As an adult I had a similar thing happen to me. I had the blood test which came back negative and was told that I ” have the celiac gene but it is not active” (whatever that means). My endoscopy showed weak and damaged vili. The long and short of it is the only thing that keeps me a symptom-free functioning member of society is a strict gluten free diet. In college there were days that I couldn’t get out of bed because I was so weak and so sick, now I am fine as long as i avoid gluten. The blood test isn’t all it’s cracked up to be; go with your gut and results. If a gluten free diet is what keeps your kids happy and healthy then do it. Don’t let the people around you talk you put of what is working; at the end of the day that is really what matters. A gluten intolerance can have symptoms just as terrible as celiac disease. Good luck.
Your story is very similar to mine. My blood test was negative, genetic testing was positive, endoscopy showed damage. The GI called it mild silent celiac disease. I don’t know what that means… I was there because my stomach hurt all the time, I couldn’t eat, I couldn’t not eat, I was very sick all the time with tons of other symptoms… but to her it was mild and silent. I quit eating gluten as it was recommended that I try that and see what happened since my celiac disease was mild. Within 3 days the debilitating pain subsided. I am very sensitive to cross contamination even wiht my celiac disease being “mild” and “silent”. I say that if they feel better not eating gluten then go with it. There is absolutely no reason for someone to suffer because the blood test came back negative.
You’re totally right. From the research I’ve done there is no such thing as ‘mild’ coeliac disease. You either have it or you don’t (which is not to say that many people with non-coeliac gluten sensitivity don’t also suffer from severe symptoms). ‘External’ symptoms may vary hugely but all coeliacs will be suffering internally, whether they are initially aware of it or not. The extent of internal damage will presumably depend upon the length of time for which they’ve gone undiagnosed. However, coeliac is a severe autoimmune disease in all cases.
I personally think there’s too much stock put in the antibody tests. The false negative rates on the tests are too high for my comfort. There’s also some question that the tests might not be as accurate if the outward manifestation of the autoimmune response is dermatitis herpetiformis (which is what the rash at 18 months sounds like).The problem is that if the kids are eating GF right now, they’re going to have to go back *on* gluten for the deterioration of the villi to show up on a duodenal biopsy – which means more pain, more sh*t (literally and figuratively), and more bedtime fights. However, as a child and family services social worker with a strong background in medical issues and children’s protection, I honestly think that it’s worth it. I don’t have children of my own but I think it’s in your children’s best interests to be checked – especially in light of your own history.
We went the natural route and had all five of our kids tested by a Naturapath since I have Celiac and the gene is rampant in my family (11 siblings all with Celiac and our Mom) not only did this reveal a gluten allergy but other food triggers as well, including corn, strawberries, banana’s, night shades and pineapple of all things lol. When my children stick to what their bodies prefer, they are healthy happy and are never sick. If they happen to be exposed, there’s hives, loose poops, ear infections….the list is endless.
My advice is to go see a Naturapath and pin point all the trigger foods, Celiac or not we want to ensure our kids are getting optimal nutrition and absorbing everything. My family Doctor encouraged this as the medical community can only do so many tests and themselves are just learning about the seriousness of Celiac Disease.
Keep up the hard work Momma!
What kind of test did your naturopath do with your children?
I forgot to add the natural route we didn’t have to go back on gluten at all.
My son was test for celiac via blood test and an endoscopy. Everything was negative but I still believed he had a problem with gluten. He has chronic fatigue and had terrible brain fog and it seemed to worsen when he ingested gluten. So he went gluten free and this helped tremendously with the brain fog. So he is highly gluten intolerant. My other son was tested for the gliadin antibody (blood test through Entero Labs) and was positive. He has hyperthyroidism which resolved once he went gluten free. Coincidence? I think not.
I had both of my kids tested by the blood test only, they both came back with and said they were fine. I did, however, completely take gluten out of my sons diet. He has had major mood issues that had been increasingly getting worse, had frequent bouts of constipation and diarrhea, he threw up on occasionall his life but shortly before I took him off gluten he was throwing up everyday after a very gluteny meal. I eliminated all gluten in our house. He is doing much better. He did eat a banana cake ar school one day, he came home in a foul mood threw a tantrum ALL night long (and he is .), he threw up the next morning and was in a horrible mood for the following days. So in short I am convinced the blood test is an unreliable method.
Also, I have known I have Celiac for less than 2 years but after taking my son off of all gluten we have tried a few baking items. King Arthur is amazing! They have cake mix that is simple and delicious! In fact the cupcakes and muffins I have made are far better than regular cake mix. I even added peanut butter to the white cake mix to make peanut butter cupcakes. They were amazing!!!! Also, throw some blueberries, cranberries, or chocolate chips In the muffin mix and you will love them. Just make some ahead of time and freeze them so you always have some on hand for birthday parties. I send stuff to school so they can keep some in their freezer for the days other kids get treats. Its easy and helps the emotions of feeling isolated and left out.
Good luck! Its a long crappy road for all of us with Celiac! …literally
my daughter was having severe GI issues at age 8 which I ignored, hoping her frequent bouts of diarrhea and stomach cramping were just “a stomach bug”. finally the bloody stool prompted a trip to her pediatrician who sent us to the Gastro. she has every diagnostic procedure one can imagine, including a scope which showed lesions. The Celiac test was negative and the bloodwork for Crohns was inconclusive. Despite this,, she was put on meds for Crohns – 18 pills every day – and did improve. We were told changing her diet was unnecessary. My son had bloody stool at age 1 1/2. He saw countless specialists when his fevers, weight loss and stomach pain couldnt be diagnosed. NOT ONE Dr. ever asked about my kid’s diets! I finally took everyone off gluten and dairy and voila! My son’s years of respiratory problems (very frequent pneumonia, bronchitis etc) disappeared. Singulair also caused nightmares and insomnia for him btw. Im off gluten, too and many mysterious physical issues Ive struggled with are gone as well. Long story to say, test results can be iffy and inconclusive so just remove gluten and dairy and see what happens. The scope was no big deal for my daughter, prepping for the colonoscopies was worse than anything!
Okay mama. I’m breathing with you. I also had to decide whether or not to do the endoscopy for my son. His values were not negative, but they were not as high as is often seen.
Here’s my story. My son (and I) had a year of colds/flus. We were sick about once a month and for weeks. Not a good year. By the end of that year my son caught Roseola (baby measles). He was four. We ended up in the hospital because he was covered in a rash, vomiting and having diarrhea. That scene occurred another seven times (minus the rash) with doctors in walk-in clinics and the children’s hospital telling me these were likely all separate viruses. No way, I finally said. My son had never displayed these symptoms before (remember he had had about 12 colds/flus the prior year). The ‘virus’ would always occur in the same way, following a very rich meal (usually at a restaurant or someone else’s house), beginning at about 2:30 am and being over with by about 4:30 am. I finally convinced my doctor to refer me to a paediatrician and then convinced that paediatrician to order the celiac screen (thank goodness for Google). The screen came back positive (120), but the numbers were not convincing to some. I struggled with the decision but then went ahead with the endoscopy. It also came back ‘inconclusive’. There was evidence of blunting of the villi, but they did not see the increased leukocytes they typically do. The doctor seemed discouraged, but it was confirmation enough for me AND I felt relieved that the damage was minimal. If there were no increased leukocytes that meant perhaps he had not experienced much in the way of inflammation – inflammation being the precursor to disease. Yay, we caught it early, I thought.
The doctor offered two options, keep him on gluten and rescreen in a year – pshaw, no! – or continue with a gluten-free diet and see how he does. Yes, thanks.
In the meantime, I had the genetic screen done on myself. I carry the DQ2 gene, which is a gene found in about 80% of people with Celiac Disease (DQ8 is found in the other about 20%). We tested my son also and he too carries this gene. This, along with the previous data, was enough for the paediatrician to diagnose him with Celiac Disease.
One year later now, my son has just had a negative blood test for Celiac Disease (his number is 2, down from 120). Yay! The diet we have had him on is working in that the antibodies to gluten have all but disappeared. Yes, he still has Celiac Disease even though his screen is now negative (see where I’m going with this?), but he must not ingest gluten.
The decision to do the endoscopy is not an easy one. In the end, we decided to do it and it is another piece of the data that helped to get us to diagnosis. It did not, however, lead to a diagnosis on its own, in our case.
Have you thought about doing the genetic screen to see if he is a carrier of one of either the DQ2 or DQ8 gene? Are you a carrier?
So, are your kids gluten-free now? For how long? And were they off of gluten when you had the screen done? They need to have gluten in their systems in order for antibodies to gluten to show up on the screen. If there is a possibility you are going to do the endoscopy or followup blood work to diagnose it, you need to have them eating gluten – how long you need to do that depends on how long they have been off of it. My son was not eating a lot of gluten at the time of the test and I think this is why the numbers were not super high and why there was little damage seen on endoscopy.
For me, I was grateful that we caught it early before much damage had been done, and I was grateful that there was enough data to do this. If I were you, knowing what I know now, I would probably just trust my gut and keep them off gluten. What may happen is your kids get older and decide to do the test themselves, in which case they will do a “gluten challenge”. They will eat gluten for about six months, I think it is, and then be tested. They may feel like garbage and say, That’s all the proof I need! Tough decision.
I sure hope my story helps you! I’ll check back in, in case you have any other questions. This WILL get easier. Hang in there.
Hi Mama, Kudos to you for your tenacity! It takes a lot of time, worry, thought….to work through the gluten/food issues.
Our son was introduced to gluten at 7 months and started showing mild issues then. He was an obsessive breastfeeder and weaned reluctantly at 2 years. Two days after he weaned is when his serious GI, sleep and anxiety issues kicked into high gear.
After putting him through an unsuccessful battery of scary and painful tests and long boring and unfun Dr. appts, we had a friend suggest going gluten free and dairy. We ran the thought by our GI specialist, pediatrician and allergy doc, they all laughed it off. We did it anyway. We saw dramatic improvements in our son’s quality of life. His anxiety decreased dramatically. Night terrors-gone. GI issues, majorly improved and totally disappeared over time.
Now, at 5 years old, he is a normal, healthy kid. We are reminded we are doing the right thing when he has a gluten or dairy exposure. His testing came back as negative for celiac, and because he isn’t sensitive to cross contamination exposures, I’m not sure that he has celiac. I guess I don’t need a name or a diagnosis to prove he has gluten and dairy intolerances. I know and he knows. In my opinion, Western medicine is not prepared to deal with these issues.
I read him your story and here is his advice. “It is better to eat healthy. Eat avocados, peppers, meat, vegetables and fruit. It is better. You will be fast and smart.” Good advice for all of us!
We bring or own special treats to parties. If they are having cupcakes or cake, I’ll scrape off some of their frosting and put it on our cupcake. We also have a great group of friends and some friends with other allergies/sensitivities. We all try to avoid to food that give each other’s children problems.
You are the mother, trust your instincts. You are doing a great job. Hope this helps, good luck!
Nice! Love that kids of yours!
I don’t have kids, so I can’t say what that would be like…. however, I can share my story.
It was actually my sister who first started thinking about Celiac’s and the effect of gluten on us… My main symptom was skin problems/rashes/blisters/hives/itchiness. Ever since I was little I’ve had skin issues, they told me eczema, atopic dermatitis etc, and I basically just had to deal with it. I had a sense that it might be an issue with gluten since I saw direct reactions from pasta/bread.
My sister went and tested negative but had something else messed up with her intestines (something with numbers being really elevated… I’m not sure, they didn’t tell her much about it). In the time before she went for the test I decided to just jump into a gluten free diet. I was feeling good… I wasn’t having any skin problems and my body was overall feeling better; the insomnia I’ve dealt with for years disappeared, my head felt clearer, my mood was more stable, my stomach felt better… so even when I heard she tested negative I figured I’d continue it. Everything was going well for me until I accidentally had gluten… stupid soy sauce brought back a full body, horrendously itchy rash (text book dermatitis herpetiformis) and a few weeks later I think I was glutened with some sauce and had a horrible stomach reaction. This was enough to confirm my self diagnosis.
I mean… an official diagnosis would be great. It’s easier in some ways when you have a label on it from somebody with an “md” behind their name. At this point, however… I’m not willing to reintroduce gluten to my diet, plan out a skin reaction so it can coincide with a dermatologist appointment who I first even have to convince to do a skin biopsy on me since a blood test could show a false negative since I believe it’s dermatitis herpetiformis instead of the typical Celiac’s (I wouldn’t be surprised if my sister got a false negative and now is still eating gluten even though it’s probably really bad for her).
I don’t want to start a medical rant/argument here, but I kinda see it as for 25 years I’ve had skin problems… as a little kid I had to be aware of clothing fibers, carry around special creams, know not to scratch a horrible itch, use special soaps, etc. No doctor thought of anything beyond pinning it on eczema and “deal with it, kid.” As an adult I’ve figured it out on my own, but now I should have to jump through hoops for *their* diagnosis? The same people who couldn’t figure it out for two and a half decades? I mean, screw that. If it looks, acts, and quacks like a duck…
Maybe in another decade when more research has been done, more doctors have been educated, maybe at that point when we’re seen as people with a legitimate problem and not scoffed at as hypochondriacs, maybe in that environment I’ll care for their official diagnosis… Until then, however, I know what problem is, and I know that I’m fully in control of my food and my health.
Sorry for being a bit long winded…
Best of luck to you and your family.
Talking about children is tricky. First of all, no one knows them like their parents. Instincts are strong in moms AND dads! Taking in advice is good but while absorbing all the information, don’t let it drown what you feel to be true ‘in your gut’.
Both my kids were screened after I was diagnosed. The results were negative but my gut tells me not to trust them. I would like to have my children genetically tested. It’s my understanding there’s complexity in administering and reading those results. I had to tell my pediatrician which test to order just for the Celiac Panel. Needless to say, I’m less than confident about going through their office for genetic testing!
My children are older than yours but I still feel apprehensive about an endoscopy. Although a routine procedure, it’s not without risks.
To plan which route to go, I would ask:
Do you trust the results?
How much more confident would a positive endoscopy diagnosis make you feel?
Is having a diagnosis going to provide any additional protection for your kids?
If the endoscopy comes back negative or inconclusive, will you trust the results or your observations?
Is it better for them emotionally to live totally gluten free or to be allowed limited amounts of gluten and then remove it later when they’re older (assuming they one day test positive.)
There are a couple of benefits to having an official diagnoses (which then would probably require the scope). Children who have been diagnosed are covered under the Americans with Disabilities Act Section 504. This requires that a public school to implement a comprehensive plan to ensure that the child is monitored and not ingesting gluten or getting cross-contaminated in school. This extends not only to the cafeteria, but also classroom materials and art materials. (you have no idea how many projects my non-Celiac daughter did in class that included them licking envelopes…) Not as big of deal as they get older but is something I would definitely consider for the littler ones who can’t self-monitor as well. Secondly, if you have an official diagnoses and you put money into an employer-sponsored Medical FSA account, you can deduct the additional cost of gluten-free foods versus regular foods because it’s a medically required diet. I do think it depends on the company and plan but I’ve been through two employer plans that have allowed it.
So you need to do what is right for you and your family and I absolutely understand not wanting to put them through anything if not absolutely necessary. But wanted to make you aware of how an “official” diagnoses might have some benefit. Best of luck to you all.
One of my kids had the hereditary gene. We never went further than that. I never had the blood work done for the other two or for myself. My father died young of a rare duodenal cancer. My husband’s mother died at 70 of a duodenal cancer. We suspect they had celiac and I suspect my husband and I both have it too. My son was nearly 15 when he decided to do a gluten challenge to have the endoscope. After one gluten meal he gave up and said it was not worth eating gluten to know for sure. I have three children. All five of us say “we have celiac disease and this means we cannot eat gluten. We’re also allergic to dairy and soya.” No one has ever questioned us or asked to see a positive endoscope, an epipen or a doctor’s note. We bring our own food everywhere and that’s just the way it is. The kids learn. The quicker you put them on the revised diet, the quicker they adjust to their normal and learn that they have to bring their own food along to parties. The schools are not informed enough to manage parties etc so I just keep things at the school for my kids and rely on them to tell me when it needs replacing. My kids soon learned if they didn’t tell me, the treats didn’t get replaced and they went without at the next class party. I leave things like starburst candy or lays potato chips at school for the kids for treat days.
My husband was diagnosed first (at age 35), and my oldest daughter was diagnosed a month later (at 7 1/2). Since my youngest was only a year old then, we made the house gluten free, and the youngest and I only ate gluten when out of the house. When my youngest started showing symptoms a year later (have a bagel at church on Sunday, enjoy some really gross diapers on Monday…), I took her in for testing. Her blood tests came back negative, but the pediatric GI decided to do the scope anyway. I’m not really opposed to that – it stinks, but it’s really just one bad day in the scheme of things. Her scope came back negative, too, but since we had the anecdotal evidence of symptoms, he told us to treat it like Celiac, and not worry about the what the tests did or did not show. She’s seven now, considers herself a Celiac like her dad and sister, and is vigilant about avoiding gluten. Yes, it stinks when they can’t share the birthday cake, but after a couple of ferocious stomachaches from accidental ingestion of gluten, the cake doesn’t look so tempting. When she’s out on her own, she might try to reintroduce gluten, but my house will remain gluten free to the end, and I will always provide gluten free options for all three of mine….
I will say that for me, I tested negative for the blood test as well but the upper and lower “scopy-s” confirmed my doctor’s suspicions that I did indeed have Celiac.
I don’t remember what percentage he said, but my doctor said the accuracy ratio is not high enough to really have that much confidence in the blood test.
If you already know that your kids do better off gluten, I’m wondering what the benefit of a scope would be? I “diagnosed” my kids via an elimination diet; for me all I need to know is that my kids can’t eat gluten. Whether it’s celiac, an allergy, an intolerance, it doesn’t really matter to me. I have seen for myself that they can’t tolerate it.
You have alot of good advice. Our story is similar, except I have one daughter diagnosed via biopsy. My 3 other children all had various symptoms, but tested negative via blood. The GI doc that diagnosed my daughter knew very little about Celiac beyond how to make a diagnosis.
I decided that the bottom line was that my other 3 kids were sick. The diet made them feel better, what else did I need? I had them all go strictly gluten free, and I have never regretted it once.
Here we are 7 years later, and there has not been a need for testing again, as all kids have learned that they feel better when they stay on the diet. My teenager included…I put him in control, and he doesn’t cheat. Kids are smart.
Also, throughout their schooling, I have never needed an official piece of paper with a diagnosis.
Yes, it is a disease, but it does not get taken seriously by others whether you have confirmation or not. Just my observation. I needed healthy kids sooner rather than later…I always figured if they wanted an official dx later, it was better when they were older, and fully developed, both neurologically and physically. Hope that helps, good luck!
When your doctor suggested that coeliac might be the cause of your daughter’s problems, what was his follow-up advice? Surely he should have ordered blood tests for her too? Or is a one-year-old too young?
Personally, with your son, I would get the endoscope done. Obviously this does mean you’re going to have to feed him gluten for a bit. But it’s better to know definitively (or as definitively as possible…). Get the blood-work done for your daughter too – if it hasn’t already been done. If that comes back positive then an endoscope is probably unnecessary (especially if her brother’s turns out to be positive). If it’s negative then also get the endoscope for her.
If all results turn out negative then I think it’s fine to keep them gluten-free anyway. I believe that some groups have suggested that gluten sensitivity can be a precursor to coeliac disease – and obviously you want to avoid them developing that if possible. If they want to eat gluten when they’re older then you can let them do a gluten-challenge. I would suggest to get further blood-work done after this challenge even if they appear to be asymptomatic.
I don’t have the common genetic markers for celiac disease. (We’re Syrian Scots.) I also did not have the anti-gliadin antibodies when I finally got tested.
What I did have, more than a decade after going gluten-free, was an elevated white blood cell count in the villi and a small amount of villous atrophy that showed up on a routine upper-GI looking for stomach ulcers. (My gastroenterologist said I was Marsh Level 1; the Marsh scale measures the level of atrophy and celiac-related damage.)
A biopsy will give you a diagnosis, even if you’re completely gluten-free, you’re from a genetic outlier heritage, and you just get accidentally glutened, occasionally.
I just read your story with the disclaimer that I did not get a chance to read through all of the comments, so I apologize in advance if I repeat things which others have said!
The antibody tests to screen for Celiac Disease can be very unreliable in children under the age of 5 or 6. The leading theory is that in small children the damage to the intestines from Celiac Disease has not occurred for a long enough timr for the TTG and endomysial antibodies to elevate as they would in an adult. There is a new Celiac antibody test, called the demiadated gliadin pepide (DGP) which is more sensitive in small children with Celiac Disease than the traditional TTG and endomysial combo which is currently used in most Celiac panels. More and more labs are including the DGP IgA, and in many cases of Celiac Disease in small children, only the DGP IgA is abnormal. It may be worthwhile to find out if this specific antibody was tested for when your kiddos had their Celiac screens done. If not, you may consider asking your doctor to order this (the DGP IgA antibody) for your kids as a screen.
Since Celiac antibodies are often negative in small children with Celiac Disease, the only way to get a firm diagnosis of Celiac Disease in babies and toddlers is to do an endoscopy and biopsy. Although this may not be what you want to hear, they may benefit from having this done now as they are young enough that they will never remember having the procedure done, and you will have an answer to why they are having their symptoms. Another thing to consider is that there are up and coming treatments for Celiac Disease, and for many of the drug trials, in order to take the medications, one must have biopsy confirmed Celiac Disease. I know that many Celiacs say that they will refuse to take a “Celiac Pill” if one ever becomes available (myself included), but for those of us with children, it is nice to know that additional treatments for Celiac Disease will be available to augment the GF diet and/or prevent ongoing intestinal damage from gluten cross-contamination.
All the best to you!
I agree with what seems to be the general trend in comments – go for the ‘scope if an official diagnosis will make a difference in your lives. If you need it for insurance reasons (doing the FSA/HSA stuff), or have some other need for an official determination, then the discomfort may be worth it if you get a conclusive answer.
If you go that route, then I’d make sure you contact a specialist (not just your normal doc) and do a fair bit of research as to what kinds of preparation they’d need – would either of them need to go back on gluten? For how long? Is 6 months of gluten exposure enough to create diagnosable problems in your daughter’s intestine and blood levels? Would you feel better getting the genetic test done first, so that you can avoid the ‘scope if they don’t have either of the Celiac genes?
If an official diagnosis wouldn’t make a difference to your daily life, though, you can always go GF and do ‘gluten checks’ once a year or so. If it’s something like a wheat allergy that they might grow out of, this could help reveal that while avoiding the pitfalls of going back on gluten full-time. (I’d recommend doing it subtly, though – see if they react to cookies made with 1 T of wheat flour mixed in with the GF dough rather than just trying out some Oreos.)
Good luck with it!
Hey Mama. You are a great Mom first off and doing everything you can to help your children. My blood tests were negative, but biopsy positive. I went gluten free a month before my biopsy and my symptoms started to subside almost instantly. That for me was the true ‘test’. If symptoms improve after eliminating gluten, that would be the only ‘proof’ I need.
I have been through the same thing when my son was small but I was armed with some additional information because of a diagnosis of my own.
This is something important for you all to know. The blood test for celiac is dependent on IgA antibodies. So the blood test can be accurate IF you make IgA antibodies. BUT! not everyone makes these IgA antibodies. I was diagnosed with a PIDD or Primary Immune Deficiency Disease. This group of diagnoses covers many types of immune deficiencies (you might recall the “Bubble Boy” – he was very ill) from the very rare to the not so rare. An IgA deficiency is one of those not so rare immune disorders. Those people who fail to make IgA antibodies will not show a positive when it comes to the celiac blood work rendering it useless. You must then go directly to biopsy to get accurate diagnosis.
This is the case with my genetic immune deficiency. My immune system has failed to produce antibodies for many years now causing me to be quite ill. These infections have left many of my internal organs damaged, including my gut. I am now unable to tolerate things like lactose and gluten.
So to Mom, hang in there! I would encourage you to ask your pediatrician to check your kids Quantitative Immunoglobulins (QIGG). It is a simple blood test that can tell you if there is a decreased immunity that would cause the celiac blood work to come back with a false negative.
Hi. My 3 year old son has recently been diagnosed with iga deficiency. He has a lot of stomach issues as well, constipation and white poop. He has a food aversion and only eats cretain things (nothing cooked). Should I bring up celiac at his dr?
I’m new to this disease, and just found out my 6 year old daughter’s blood work came back a 93….positive for Celiac Disease. She is scheduled to do an Upper Endoscopy Tuesday, and have a biopsy done to her small intestine. If this comes back positive for sure for CD looks like we will be switching to a Gluten-free Diet.
My question is…I also have a 13 year old son, who shows no signs of CD, but because he is an immediate family member it is likely he will get it too. Should I get him tested and if his blood works comes back positive…is it necessary to get a biopsy done? Or would it just make more sense to switch over to a GF diet for the whole family?
If I were in your shoes, I would for sure get the whole family tested. That includes you. He had to get the celiac gene from someone. Good luck to all of you.
Yes, I have him scheduled to get tested. Do you think it’s necessary to have him go through the same procedure if his blood work comes back positive for CD?
I’ll leave that to the doctor decide. I try my best not to cross the line when it comes to medical advice. Keep me posted.
I have 4 children. One has neg blood/pos biopsy x2. One has pos/pos. One has high pos blood/neg biopsy. One has neg/neg. Go figure. I trust my mom instincts because I was right and dr was wrong on almost all of it!
An endoscopy isn’t a horror. It’s not surgery!!
For those who are put under like I was agree. But some docs do it while the patient is awake.
In my opinion being put under general anaesthetic is a risk in itself. Myself and my son have proven sensitive to gluten by dietry changes. Gluten in= me feeling tired, lethargic and like my brain is working slowly/foggy
My son having stomach cramps and diarrhea.
Gluten out = no symptoms
He was tested as a baby as he had low weight gain, negative result. Over time I figured out it was probably a sensitivity however I’m not willing to put him back on gluten or put him under ga to find out what I know already or to have it come back inconclusive or negative only to have him on a gf diet anyway.
When it comes to schoolsthey go off what you tell them. Tell them the child is coeliac and can have no gluten at all and they’ll go by that. Tell them you will provide your own food and provide his own cake on birthday days or provide another gf treat.
My blood test is negative for celiac but i think that i have celiac ……. i am cutting gluten and i will post here the result
Hello, by the dates I see in above comments, I am hoping this particular mom has figured it out, however just want to throw my 2 cents worth in for the next mom in this position. The blood tests are not very accurate, some say they produce up to 70% false negatives, so they aren’t always helpful. Plus you need to re do them every year or 2 since celiac can develop at any time in your life. Most of us need a positive result for insurance to pay for an endoscopy, but if your children have been gluten free for a time, it has a good chance of coming back negative also. (please don’t have them do the gluten challenge, it is dangerous and can cause organ damage) That narrows the choice down to a genetic test. They are less than $200, currently life extension and enterolab are good choices. (do your own research though) Your doctor may be willing to order, your insurance might pay. (But your doc may not know who to read results ) Genetic tests are 99% accurate, however if you have the gene(s), it does not mean you have or will get CD but if you don’t have the gene(s), to the best of my understanding, you will never develop CD. If my children had any symptom at all, PLUS had the Celiac gene(s), I would assume they have CD and remove all gluten from their diet immediately. My whole family has had the genetic test and we all have one or both genes. Even my daughter in law. And my children’s bio dad and their step dad. I am the only one with an official dx and my gene test shows the lowest risk of the whole bunch. Pretty interesting.