
ArPlasma
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Hang in there! My son's blood results were comparable to your daughter and the doctor said the same thing to us after the biopsy "everything looked normal" but when the results came back I was told that there was a lot of villii damage. It was pretty stressful for me to hear too but we went gluten free right after the biopsy and got confirmation a couple of weeks later that indeed he had Celiac disease when the lab results came in.
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Me again . . .
My older son tested negative on all the blood tests (when I had the whole family tested after younger son's diagnosis). Our doctor (a celiac specialist) still requested he have an endoscopy because he had strange discolorations on his teeth. His biopsy was negative too . . . and now, a few years later, his teeth seem completely normal. He is not gluten free, but eats about 80% less than he used to eat.
Our dentist knew ZERO about Celiac Disease or the symptoms related to teeth. She barely knew anything at all about Celiac Disease.
Our local GI Celiac specialist are really strict on the golden standard and need both blood and positive biopsy to diagnose.
In the month and half that DS2 has been gluten free he has gained 3/4 of an inch, he had not grown in the 4 and half months before and barely at all for 8 months. His pediatrician said it happens, probably not related to him being gluten-free now. How can one be sure?
I am worried about starting school without a diagnosis seeing how hard it is to protect ODS1, he was just glutened this week after dodging a teacher giving him a pouch of goldfish crackers a few days before. He kept saying:'it's my fault, my fault, I did not ask' all while being sick.
This is tough!
I wish some docs would be more proactive when there is a family history to keep kids safe.
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Ha! I had the same question. Thanks for the answer!
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Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want
If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?
tTG- IgG:46, tTG-IgA >100, EMA 1:160
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This may sound harsh... but it sounds like the best you could hope for is that he developes really bad symptoms very soon. Maybe if he had bad symptoms and felt really crappy he'd admit to himself that he needs to be gluten-free. Going for years asymptomatic would be worse, IMO.
I had some similar thoughts. I don't want him to get sick but something is obviously not right already and he is not getting( enough?) outside signs of it. I think he might come along. We went to a work seminar last week, he had some gluten filled food and spent 2 days with severe stomach cramps and in the bathroom. I had to have him excuse from talks.
he did mention yesterday, in spite of receiving the negative biopsy results, that he is starting to notice a difference when he eats gluten. I think it is also because we cut it out fully at home. So hopefully he will be more conservative soon.
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Hi Arplasma,
Here are a couple threads that might be interesting to you. There are not scientific studies, but real life accounts of what happens to celiacs who cheat. The 2nd link has story from a woman who cheated on the diet and some pretty sever consequences. Surgery to remove part of her intestines.
How bad is cheating?
https://www.celiac.com/forums/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/
Falling off the gluten-free wagon Post #37
Thanks again!
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Just wanted to say hang in there! We dealt with unexplained stomach pain and headaches for a while too. 3.5 years without gaining a pound is a bit scary. Has his pediatrician started anything( tests) about it? Did he go through Celiac blood panel yet? If not, as others have mentioned he needs to stay on gluten diet until after biopsy for all of it to be valid.
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My son had a lot of GI issues as a baby( projectile vomit, diarrhea), plus skin rashes and was a very colicky baby. I wish I had pushed the issue a bit more. He was finally diagnosed this past month after almost missing it again( I had a hint in June last year and after being told it was highly unliely he ad Celiac, then given the wrong tests, then finally the Celiac panel, then biopsy, we were finally able to put a ame on it). Now we're struggling with DS2 chronic urticaria with unknown cause, tested negative on Celiac blood panel( right below cutoff), erratic growth( doctor does not seem concerned...I am). We cut him off gluten since our house is gluten-free anyway. Still looking and trying to figure out the pieces of this puzzle. All of that to say that keep asking questions, look around and follow your intuition.
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Something that might be of interest to others as well. A review of the different existing studies on complications of Celiac.
Open Original Shared Link
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Even if he is asymptomatic damage is being done. As a celiac that dose not eat gluten free he is facing many consequences ,, if the risk of malnutrition , osteoporosis, other autoimmune diseases or the higher risk of colon cancer does not faze him ,,,maybe the fact that gluten is eating at his brain and will eventually deprive him of many things he has grown accustom to ,,, such as walking and talking
will get his attention. Have him research Gluten Ataxia
Anyway, his biopsy came back negative today( don't get me started on that either) but he takes it as he is off the hook. I found a couple of papers that I passed on to him. It is his choice.
Our house is gluten free though( i cleaned everything after our son's diagnosis). He did mention today that he is starting noticing that outside( read gluten- filled) food make him feel sick. Duh...
He is smart but stubborn. When he decides to be gluten-free, I know he will strict about it. In the meantime, 'denial' is the key word here. I know he will repeat his blood tests in a year, hopefully nothing significantly bad will occur in between.
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Yes scientific papers are the way to this heart. Give him a sample description, control group, test duration, standard deviations, etc. and he will be happy( yes, evenings are fun in our household). I'm trying to find a summary of this, or may just end writing one myself if necessary.J/K( sort of?)
Thanks for the link, I have read it before but looking for some more detailed infos. I have read some other study papers on different subparts of untreated Celiac but a condensed paper with sources would work better. Thanks again!
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Hello all,
I was wondering whether you might have some ref papers about the consequences of untreated Celiac( with data, description of samples, etc.).
My DH, awaiting for his biopsy results, is starting to doubt whether since he is 'asymptomatic'( according to him...), he should go on a strict gluten-free diet if he is diagnosed. His GI said, he would still recommend it, no matter outcome of biopsy, based on blood tests and family history( our DS, three of his aunts, uncle, 2 first cousins are officially diagnosed plus 2 siblings with IBS and other GI issues) but at the end of the day it will be DH's choice. If positive, obviously he( GI doctor) told DH that gluten-free is the only way to go.
Well, DH is not 'convinced' that strict gluten-free is the only option...if he was not my husband, I could let him figure it out for himself but I care.
So I am looking for a 'state of the art'/ review of studies kind of paper that he could go through. In particular the impact of going untreated on 'asymptomatic' Celiac sufferers, for which his hypothesis that having a minimal gluten intake( read a beer) every now and then is not going to significantly impact the outcomes( I.e. increase risk of other diseases).
Thanks for any help you can provide!
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It takes 1/8 of 1 teaspoon to create a chemical response in your body to Gluten whether you feel that effect or not--it's there. I have seen research (although I can't cite it, sorry) that said eating (1) cheat meal per month increases the mortality of someone with celiac disease by 600% in long term studies.
It seems like I found these stats on a .gov site. The point is this, don't be lax or cheat if you are Celiac. Ever. Ever. Ever.
Eers03 if you ever find the ref for this it would be great. I am looking for numbers/ studies for asymptomatic diagnosed Celiac who go untreated. My DH just went through his biopsy and under the guide of some family members ( who have IBS and all sort of crazy GI issues btw but 'don't think they have anything') is backtracking on the gluten-free diet. Our son just got officially diagnosed( biopsy confirmed). Since DH blood levels are lower than DS( who was very symptomatic in retrospect), he thinks it can't be that bad to keep having a Guinness every now and then( among other things!).
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Hi Theresa,
My DS had his endoscopy last month and got a confirmed diagnostic almost 2 weeks ago now. It went very quickly. The procedure itself( not counting, anesthesia, waking up period) lasted 20 min and he was not in pain at all afterwards. To us it was worth it because now everyone is enforcing it at school in particular.
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Glad you have answers. Be sure to get everyone else in the family tested.
We did. DD tested negative on all. DS2 tested negative on all as well( very close to positive on TTG- IgA and has a skin rash similar to what DS1 at the same age), DH tested positive on ttgs and just had his endo, waiting for results. His GI told him that given blood tests and family history, even if the biopsy is negative for him it most likely means that they have not found damage yet. So everyone is going gluten-free in the house! DD can eat gluten at school and outside, DS2 not at school yet so he will be gluten-free for now.
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Thanks everyone! The school has been great so far, they had already passed a note to the teachers before diagnostic but now the nurse made it known to everyone that it is official. We are still writing the 504. We took a break this week- end, I finally gottorelax a bit and of course I got sick. I always catch something( cold), after being stressed out for too long.
DS's school teachers as well as karate instructor have been commenting on his increased responsiveness.
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Thanks everyone! Next on the list is working on the 504 plan for school.
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After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.
It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.
Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.
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Thanks Cara! Yes, My main concern at this point is the enforcement of his diet at school and wish we can get an 'official' statement of gluten intolerance to make things easier at school and everywhere else.
I had to chuckle at your mention of m& ms preference vs. cupcake because I had this discussion today with DS. There was a party at school( again?!) and everyone else had a cupcake but him. He told me he did not mind at all, m& ms are his favorite. I guess he never liked cupcakes, always ate the frosting only saying cakes and cupcakes were not good for him, they made him feel funny.
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Does your son have celiac? If so, did your son's pot belly improve on the gluten-free diet? I suspect I've had some gluten intolerance growing up with symptoms off and on but I never knew they were abnormal. I think I had a bit of a pot belly around the age of 5 (from what I remember in my childhood pictures around that age) but nowhere near as huge as my oldest. Even the pediatric urologist pointed out that her belly is abnormally large, a hallmark of constipation.
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Hi Diana! I am new here so probably not of much help but DS1 has had a pot belly and super skinny body everywhere else otherwise( about 25 percentile difference between height and weight). I used to point it out to the docs too as worrisome to me and kept thinking it was not right but kept being told that everyone in the family is tall and on the thinner side. I could not shrug the feeling that he looked like a starving child.
What blood tests did they do to DD?
Also, from what I understand, the damage of the villi can either be missed( not enough biopsy samples for instance) or not enough yet to be detected. Others might be able to explain it better.
Hang in there. I hope you figure it out quickly!
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Hey icelandgirl, have you tried the Pamela's pancake mix? It passed the kids' test in our home. We found that a lot of our regular store brand products were gluten-free including their breakfast sausages and breakfast meats and sausages in general. Hang in there, we're new in this too, we 'shall conquer this!' I don't have celiac disease but made the house gluten-free for the sake of my son( and husband who tested positive but still waiting for biopsy).
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Our appointment was cancelled by GI's office at last minute(1 h 30 before!) and rescheduled for next week.
so still no results. However the doctor asked that we see the nutritionist right after seeing him. This is taking for- ever.
Anyway, DS is still doing great off gluten, no tummy ache in 3 weeks now! Woohoo! And he is asking what has gluten. He told me that they were passing cookies as a treat today at school but they had gluten in it so he had his special ones. He did not seem too upset about it.
We are all learning.
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I agree with Bartfull, if you are with her it might be a good learning opportunity.
Child Not Getting Better After Being Gluten-Free
in Parents, Friends and Loved Ones of Celiacs
Posted
I am really sorry to hear that about your daughter. Our son was diagnosed in January as well and we are still cleaning up everything around us. He got contaminated two weeks ago at school by supposedly gluten-free cookies but baked on a cookie sheet sprayed with canola oil spray which contained glutened.
From the lentils to stoneware, gluten keeps creeping up on us. I keep finding it in places we were thinking about.
I hope you figure out quickly what could be the culprit.