Ok…confession time. When it comes to celiac disease, I know tons and tons about the realities of the disease and how to best deal with the ins out outs of it. But when it comes to the actual medical lingo, I’m not quite as versed as I should be.
But when I received an email from a scared 12-year-old girl whose doctor is saying he wants to test her again for celiac disease, my internal WTF alarm went off.
Here is her email:
I’m 12 years old and I was diagnosed with celiac disease about 3-4 years ago. I recently went back to my specialist and he wants me to get another blood test so I have to eat gluten again. Luckily, my celiac isn’t that severe but he also put me on laxatives and Vitamin D supplements. I feel really embarrassed about all of this because just today I pooed in my pants without even noticing! Luckily, I was at home but it’s still pretty embarrassing.
My mom said it was just my bowel getting used to the gluten again.
My doctor also said I might have to get three small bowel biopsies which scares me. I also might have low thyroid and to top it all of I’m hyper mobile! So when I don’t have a sore stomach from gluten, my joints hurt. With my celiac, whenever I go to parties I always take my own food and at my class party a girl Brought in gluten free lollies for us to share.
Anyway I just thought I’d share my celiac story!
I thought it was great that this brave girl reached out to me for help, yet at the same time I felt totally frustrated for her. Why go through an unnecessary medical procedure? Why go back on gluten again when you have celiac disease? I responded as follows:
Hi there. I am so sorry you are going through this. Why does your doctor want to test you again? If you were diagnosed once, than you have celiac disease. Is there something I’m missing? Is he retesting you for a specific reason? What does your Mom say about all of this?
I just heard back from her and her is what she had to say:
I’m getting retested because on the scale thing (I’m not sure what it’s called) I originally was on 41 but since I’ve been on a gluten free diet it’s gone down to 13. They believe it could be something else, but they aren’t sure so I’m getting retested. My mom is okay with it I guess but we’re just slowly introducing gluten into my diet so my bowel can get used to it I guess.
Ok folks…please help me help her. Any medical professionals out there who can guide me in the proper response? What is the “scale thing” she is talking about.
She’s 12, she’s scared and she is poisoning herself. My question to you. Is this necessary?
Hi Gluten Dude, This poor girl! Once a celiac, always a celiac! I think she needs to clarify what the “scale thing” is – but I’m guessing it might be the TTG blood screen. If so, it should be going down when she is on a GF diet! It should be pretty close to 0 though after 3-4 years on a truly GF diet. However, eating gluten and getting tested again isn’t going to solve this. I’d suggest meeting with a nutritionist familiar with celiac disease who can go through what she is eating, procedures followed at home, etc. can help to find sources of “hidden” gluten. I am concerned for her because her doctor doesn’t sound like he knows a lot about celiac disease and she should be getting her thyroid tested rather than getting re-tested for celiac disease. You can let her know that my son says the endoscopy is no big deal and not to worry about that. He had it when he was almost 10 and he’s 13 now – it sounds like they are on the same celiac timeline. For what its worth, his TTG was pretty high and took almost 2 years to normalize to undetectable. Good luck to this girl, we’re thinking of her!
This seems quite strange to me. I haven’t heard before that you can more or less outgrow Celiac Disease. Perhaps they think maybe she had more of a “wheat allergy” than actual Celiac? Kids can outgrow allergies, my daughter has an egg allergy and all we keep hearing is that by 16 hopefully she will outgrow it. Question, did they do the endoscopy to diagnose? If not, then they never had a sure diagnosis, no?
I work with someone who was incredibly sick as a child and they finally decided she had Celiac. Her doctor put her back on gluten years later, she is out of college now and fine with gluten. Seems like a similar story, and it baffles me. I’m banking on it that these kids had an allergy, and not actual Celiac Disease?
Not a medical professional, but my guess is they are referring to the number of lymphocytes per 100 epithelial cells. 30 per 100 is normal. Any amount over that without actual villi damage is a Marsh score of 1. I would wonder what other testing she may have had.
Registered nurse here with her own celiac here that forced her to become for educated in the terminology…
It sounds like the scale thing is the ttg blood test, and by now it should be below seven, so thirteen is still positive. As part of the healing on a gf diet this naturally goes down as the level of inflammation is decreased. Celiac is an autoimmune condition that is life long even if you are asymptomatic.
Laxatives are probably not a great option to be taking right now, but you don’t need to take them if you’re having diarrhoea.
They’re meant to help with constipation, so if she is still taking them she needs to stop!
Vitamin d deficiency is very common, so don’t stress about that, I know it’s a medication, I’m on it too, but it won’t hurt you.
Thyroid problems are extremely common in celiac sufferers… Again I have this one too, it is manageable with regular medications and blood tests.
You shouldn’t need to get retested for celiac if they did it properly the first time around.
Maybe they didn’t and they just trialled you off gluten and you improved and now they want definitive results.
Find out why they want to do it!
And you must not be feeling 100% if your dr wants to change all these things so I suspect there is more to this story that we don’t know, so take all advice on here with a grain of salt.
Lots of gf love and hope you get all sorted❤️
Would laxatives interfere with a gluten challenge and mess up test results?
I’m wondering if this link from the University of Chicago might help. It says you can go straight to the biopsy after just 2 weeks back on gluten, and even then you only need to be eating 1 cracker or 1/2 slice of bread per day. But I agree, why retest? Sounds like antibodies went down, which is a good sign. We were told that for Celiac patients, anything under 20 was ok, although many people do get it closer to 1. I would get a second opinion. All the best! Thanks for sharing.
http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge
Poor Kid! The scale is probably the height weight percentage. It compares heights and weights to all kids of your age. so 41 would mean she was bigger then 41% of kids her age, going down to 13% means she has not grown properly. Before Celiac diagnosis, my son went from 40% to 4%, now hes back up to 10%, but he only grew after we also realized he has a severe cross reaction to corn.
If she’s not growing on GF, then she has something additional going on, but that doesn’t mean she isn’t Celiac.
My question is did they do biopsies the first time, or did they do blood tests/ gluten-free. Regardless, if her pain levels have gone way up since reintroducing gluten, I’d say that’s a red flag for a definitive diagnosis no matter what tests were done. Personally I want to punch this Dr of hers.
If her thyroid doesn’t work properly, that would also create the not growing problem.
If the scale is the TTG levels, at 13, that means she is still getting gluten’s in her diet or cross reacting, and doesn’t need tested again, needs to be and have her family be better educated.
This is confusing to me, but I wanted to give my input because my daughter is also 12-years-old, and we have been through a lot with Celiac disease. First, your numbers are supposed to drop on a diet free of gluten- that is your body responding to a gluten free diet and all the more reason you should be on a gluten free diet.
My daughter has been on a strict gluten free diet for four years now, but was still staying sick all the time. I was against the recommended endoscopy and colonoscopy, but I followed the doctor’s advice, and found out that we were also dealing with mild Crohn’s disease, so the biopsies may be a good idea. I am finding that my daughter’s doctor does not want to make a formal diagnosis of Celiac because she did not get an initial scope to confirm it years ago (even though her antibodies were >100). Just realize that eating gluten is damaging your body, and many times the parent has to educate themselves and be proactive, even if that may mean going against a doctor’s recommendations.
If you are still staying sick, I would recommend looking at other grains as a culprit because they can mimic gluten in the body. My daughter is a different person now that we eliminated oats and corn.
It sounds like the doctor is a sadist. I can’t imagine why, if her TTG was 41, clearly celiac, that they would ever need to reintroduce gluten. Exactly the opposite, if she’s not below the threshold after being GF they need to find the hidden gluten she’s clearly getting, not reintroduce it.
Some doctors just don’t get it. Some doctors are downright bad. Some doctors are evil and want to torture small children under the guise of medical care. This one sounds like the latter.
Oh my goodness – that poor 12 year old is going through nasty Celiac attacks – she definitely does not need to be consuming any gluten…nor does this child need to go through any further invasive testing unless there is a definite indication of another serious problem. I do not understand why doctors do not recognize Celiac Disease for the serious disease it is, sadly 1 in 300 people have the disease and only approximately 50% are NOT diagnosed!
According to the Celiac Disease Disease Center “The average length of time it takes for a symptomatic person to be
diagnosed with celiac disease in the US is 4 years; this type of delay dramatically increases an individual’s risk of developing autoimmune disorders, neurological problems, osteoporosis, and cancer Source: Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al.
American Journal
of Gastroenterology
, 2001, 2006.
I’m a med student and have been involved in celiac disease research for quite a while now. It’s pretty hard to know what scale she’s talking about, but my guess would be tTG. This test varies significantly in what the cutoffs are from lab to lab, so depending on where she’s getting tested, the 13 might be in the normal range. My question is- How was the first diagnosis made? If it was done only through bloodwork the first time, her GI may be looking to confirm the diagnosis with the gluten challenge and endoscopy or may be trying to make sure they aren’t missing something else that could be causing symptoms. I hope that the gluten challenge is not something that the physician is taking lightly, as we know adding gluten back into the diet of someone who does have celiac disease causes the autoimmune cascade to begin again and can lead to other issues down the line. There are definitely cases in which it is necessary, but from the information here, it’s hard to know if this is one of those cases.
I would say if the family is concerned, it’s never a bad idea to get a second opinion! I really hope it all works out okay. I was diagnosed with celiac when I was 12 years old and I remember exactly how it feels to be in this situation. It may feel difficult and confusing right now, but continuing to look for answers and keeping positivity is a major key to getting through.
Best of luck!!
Yes, more clarification is needed. I agree with the others that it was probably the TtG test, and if that is the case, there is still some hidden gluten being introduced if she is around a score of 13. What she doesn’t say was whether they are taking those numbers for a “positive” for celiac or if it was confirmed by endoscopy. That needs to be clarified. There is no need to continue laxatives, as not all childhood celiacs are constipated (and she certainly doesn’t sound like it!)
Vitamin D is helpful if you have been celiac for a long time and already suffer the long effects of malnutrition, but if it was caught early enough, she might be fine. Although now researchers say we can all benefit from more VitD as we lather on sunscreen so much to protect from UV, we are indoors more now than ever, etc… plenty of medical journals to site on that one.
And yes… probably should get the thyroid checked out –
Good luck to you. And make sure you are confident in the REASONS your doctor wants you to be tested and have gluten reintroduced. You don’t grow out of celiac, only allergies if you are lucky.
My daughter was diagnosed at 3 and was never given the biopsy. The pediatric gastro wanted to do it but our pediatrician said there was no need. Her blood levels were so high that regardless she would be off gluten forever. She had been through so much as a baby trying to get a diagnosis we were thrilled not to do it. When I questioned the gastro about the biopsy, he said she would need that piece of paper to say she had celiac to so when she is a teenager she doesn’t cheat and eat gluten!! She was so physically sick at this time and fully recovered in 6 months. She has been “glutened” twice in 7 years and it is literally like she is being poisoned. I would NEVER EVER agree to giving gluten after a celiac diagnosis.
My thoughts were exactly the same as Sarah’s. If they never biopsied her then she doesn’t have a definitive diagnosis. Blood test alone isn’t definitive. To get an accurate biopsy she would need to consume gluten if she’s been gluten-free. There may also be insurance reasons she needs a definitive diagnosis. (For instance, if she needs certified gf prescription medications that aren’t covered by her insurance plan.) <—I've had to fight this more than once.
It seems to me her family isn't doing a very good job of explaining *why* she has to go through this. Which is unfortunate.bChildren can understand *so* much more than most people give them credit for.
(Not a medical pro…just been dealing with my own CD for six years. Education is crucial!)
To definitively diadnose celiac disease, doctors usually use a TTG IgA test(tissue transglutaminase immunoglobulin A) to check whether it is released from the intestine in celiacs. There is a more accurate test that is sometimes used, which is a DGB IgG(deanimated gliadin peptide antibodies). You need to ask the doctor why the test needs to be done. Never be afraid to ask questions. I am not a medical professional, but have had this disease for a looooong time.
Hi there. My 10 year old daughter sounds similar to you. She is very smart, funny and happens to have celiac disease. She has been on a very strict gluten free diet for almost three years, with minimal decline in her ttg levels, which weren’t all that high to begin with. She is also mostly asymptomatic – her major complaint has always been constipation. She was diagnosed with bloodwork and an endoscopy.
Our entire house is GF, we don’t eat out, and for a full year we followed Dr. Fasano’s Gluten Contamination Elimination Diet – which is basically no packaged foods, only fresh herbs, fruits and veggies. Even that barely reduced her numbers.
We really like our doctor, but did go for a second opinion. It was over pretty long drive to get there, but worth it for peace of mind. We did not have to reintroduce gluten, but my daughter did have a second endoscopy. She said it was no big deal, so no worries there. The worst part of the endoscopy was skipping breakfast!
The whole process can be pretty overwhelming as a patient (and even as a parent). My advice is to SEEK OUT A SECOND OPINION. Researchers really are learning new things about celiac disease every day. Every person’s symptoms and healing time is different. Our biggest challenge as parents and patients is to find a doctor that understands our particular situation and is staying up to date on the latest relevant research.
If there is a major hospital with specialists and a research department in a city within driving distance, that would be a good place to start. I’d recommend a Children’s Hospital – you will likely discover that the support that you get there will be so much better than just a GI doctor’s office. Your parents can contact the pediatric GI department and ask which doctor has celiac expertise. The other good thing about being seen in a collaborative environment, is that in a tough case like this, the doctors can consult with each other and there is usually a nutritionist on staff as well. You should be asking about Vitamin D supplements and Calcium, too. Did you ever get a DEXA bone density scan as part of your initial follow up? That is so important for a growing girl with celiac disease.
I believe that TTG levels can also be elevated if there is another untreated autoimmune disease, so they should be looking into that (thyroid??). Many people that have celiac disease also have autoimmune thyroid disease.
Someone above posted a link to the University of Chicago’s website. here it is again:
http://www.cureceliacdisease.org/
They have good information that you can trust.
As a person with celiac disease, you ultimately need to be able to advocate for yourself in order to eat safely and have access to good medical care. Right now your parents’ job is to guide you toward that goal while advocating for you. I’m sure that they are doing what they feel is best, but if you are concerned keep asking questions until you understand. It might help you to keep a notebook with your questions and list of symptoms.
It sounds like reintroducing gluten is causing you some pretty major problems. Is there a nurse at your doctor’s office that you can talk to? You should not be having BMs in your underwear. It is embarrassing, but you need to let your parents and the doctor’s office know so that they can change the laxative they are giving you.
I wish you the best of luck!
can you ask her to be specific about what she means by the “scale thing”
Tess said this best: GET A SECOND OPINION plus all of the great advice she suggested in her email. In addition, consider that your monthly cycle can affect to the severity/discomfort of the symptoms your are experiencing; it can make you feel even more crummy than usual.
She definitely needs to get tested for Hashimoto’s. I have it and cannot consume gluten. I have stomach issues still and I have been off of gluten for close to 2 years. Hashimoto’s can cause so many different issues. There is a great website called Stop the Thyroid Madness that can help with tests that need to be run. Doctors are clueless about Hashimoto’s as well.
Good luck to that poor girl.
Depending on her location, I would urge her to see a doctor from one of the key celiac research centers. Assuming she is not near NY, Boston, Chicago, etc, I would strongly ask her to urge her doctor to contact one of the centers for updated (real?!) celiac info. I wonder if she can share her town’s location and perhaps in this group someone can recommend a celiac literate GI?
I agree that once a celiac, always a celiac. Sounds like this doctor is just test-happy. Some are because of the $$$$ involved. I feel for this girl going back on gluten; I have heard it’s worse the second time around. And as for her constipation with celiac – I have that, too. I have given up laxatives for a good magnesium supplement. That has taken care of my constipation issues. And the aching could be from another food sensitivity. I get it from green peppers. There is a simple food sensitivity blood test that she can get, then eliminate what she is sensitive to, and add each food back in gradually until you find the culprit. Also it took me many years to get my thyroid straightened out. One doc tried synthroid, but it is T-4 and did nothing for me. I needed T-3 which I now get from a compounding pharmacy. It may take seeing a few docs before you find a good one thyroid-wise. There is more to the testing than just TSH. I wish her well. I am not a medical person, but I have spent much time researching, taking care of myself, vetting doctors, learning from others. This testing just sounds like too much to me. Best of luck. And don’t despair. Things will work out if you see the right people and be your own advocate.
Both of my kids were retested by biopsy after 1 year on the gluten free diet to measure their Marsh scores which estimates the level of intestinal damage. They were NOT told to go back on gluten because celiac never goes away. We retest the antibody levels every year, but the extra biopsy reassured us that their villi was improving since there are some studies that show that improved blood levels don’t necessarily translate to improved intestinal health, and there may be other issues or trace gluten to consider. What else, however, this girl’s Doctor is looking for seems to be the big question, and perhaps a consultation at least by phone or a telemedicine appointment with a celiac center would be a good idea.
I was at my rheumatologist, the subject of my being IgA deficient came up and she said, “Oh, then you’re celiac?” She said the two are being found to be connected when I expressed surprise.
Being IgA deficient means you often test negative on that particular blood test, as I did way back when.
Mom, unless there’s a critical medical or educational reason for it, don’t subject her to that ordeal just to prove something. Your daughter already knows how to stay healthy and not to be in pain; if she wants it later on she can decide to do it.
And quit with the d@#π poopy pills already!!!
If it looks like a duck, and quacks like a duck and walks like a duck ….. it is a damn duck. If by some wonder this poor child is not coeliacs.. how on earth with it harm her to be gluten free. My children and I all have coeliacs and I am so grateful I live in NZ where we have a world leader in paediatric coeliacs who sees NO REASON at all to keep re testing to prove the point. I am surprised at how this upsets me… it is abuse.
Poor kid. To her Mom … please find a doctor who actually KNOWS Celiac Disease. Besides that, if something your child eats makes her feel awful, don’t make her eat it, no matter what your doctor says. If she was diagnosed Celiac, accept it, tell the doctors to accept it, and let her keep on healing on her gluten free diet.
OH NO! Poor girl! Her mom needs to get educated.
My daughter, who has celiac, sees a SPECIALIZED celiac doctor at our children’s hospital (Children’s Mercy in Kansas City – check out Dr. Bracken. She too has Celiac). And yes, Celiac patients are put on a scale but only for the first year (reocurring visits every 3 months for a year until your numbers go down). My daughter was “off the charts” at first. They stop testing your celiac numbers when they are at or above 40. As you go OFF gluten, they’d (logically) go down. My daughter is now at a 5 after a year off gluten. A “normal” person is below a 5, like a 3. My daughter will never go below 5 with Celiac. It is because of my husband and I’s diligence that she is this low (we ripped out our kitchen – I’m your crazed GF mom, but my daughter is 6 and I can be). This poor girl is only going to go back up because of the gluten when she is going down because of good work (NO GLUTEN!). I really wish she had a specialized doctor to be her advocate.
Dr Bracken: http://www.docspot.com/user/1208073734?s=00_LzEuxz0vMTbVVy8lPTizJzM-z9U7MK04sVjUycM4sqdQB0r7-ajmJJbbGlnoGlpbmxmo5eem2upYmeqbmFqbmammZOSWpRbZBhuYGxgZqQPNSK2xLikpTldOL8ksLDAE#container
I also found this website that may be helpful to people looking for SPECIFIC celiac disease doctors. It sounds like there is a need
http://www.docspot.com/d/MO/kansas-city/specialty-interest/celiac-disease.html
This is for Kansas City but it appears you can search for other areas at the top!
Thanks everyone. I have forwarded this page to our celiac friend and hopefully her mom will see it as well.